Amy, you aren't going to believe this but I have had the exact same experience as you. I know how severe the pain is. I was misdiagnosed for 21 years. Believe it or not my case was even worse because my Gall Bladder was removed (which is needed to regulate the bile) and I had intestinal surgery that re-sectioned my ileum, which is the part of the intestines that is suppose to recycle the bile back into your body. In a normal person 97% of the bile coming from your liver is absorbed back into your body and only 3% makes it to your large intestine. In your case (and mine) most of the bile was going on through our colons. People don't understand what you mean when you say it burns. They don't understand that it is a true chemical burn on your butt caused by the hydrochloric acid from your stomach shooting through you bowels 10 time a day. I finally gave up on the doctors and started doing my own research. I'm a nuclear engineer. I understand technical terms and processes. I started studying medical journals, medical procedures, etc. etc. etc. And I found a solution. It's not a cure but so far it has been working remarkably well for me. Let me explain how and why it works. As you know you have to take something to absorb the excess bile that is not being recycled back into your body so it can pass through your large intestine more easily. The medication you are taking now does that but it's awful stuff and doesn't always work the same way every day. The effectiveness of the "product" taken to do this is determined by the ratio of soluble and insoluble fats that are in that product. (in your case suspension powder). There is a regular food that has the perfect ratio of fats that is exactly right to correct your problem. This sounds so stupid simple that you aren't going to believe it. But it's true and it works. Here it is ..... Eat 10-15 pecan half's at night before you go to bed and 10-15 more, either with, or right after breakfast in the morning. That's it. Stop what you are taking for at least one day and try the pecans instead for 3 days. You will notice the difference immediately. And it is all natural. Try this before you respond. and then do whatever you can to get the word out. You and I both know what it's like to live with Bile Acid Malabsorption. We need to do everything we can to save other people from the pain and agony we both understand. Don Dattilo San Diego, CA. USA
My daughter was using a public one room bathroom, and I was next in line, when a woman with IBS got in line behind me. I took notice as to how much pain she was in and pounded on the door, telling my daughter to get out because there was an emergency. That woman found me later in the store and made me feel like I as a super hero for such a small act of kindness.
Just had a CT scan, the first of many tests…my doctor thinks I need a therapist and antidepressants. Apparently, we can’t cry when we are past frustration. You’re story sounds exactly familiar to me!
Yeah it’s the same here in the U.S. It’s awful that these egotistical jerks are everywhere in the medical field. There should be a huge psychological exam for people entering, progressing through, and graduating into any medicine. Thank you so much for sharing your story. I’m currently going through the same thing going from jerk doctor to jerk doctor. I feel alone as well and now I know that someone else understands and knows what it feels like.
This is why I haven't even gone in! I suppose I should just go in for initial bIudwerk/panels to be done and then have info for my own online searching. I don't have the money to be tested on with wrong treatments that will cause new problems
I went through the SAME EXACT thing for the past 5 years. I’m a doctor myself and it’s been so so tough to get anyone to listen to me. I finally took Colestid and figured it out. I lost relationships, missed events, missed 5 years of my life because of this but we’re here better than ever. I’m here for you! Thank you for sharing your story
Maybe would Psyllium Husk be better? Had a gallbladder surgery and always had "IBS", I'm thinking maybe this is what I've had all along. OH yeah, I've been studying medicine, reading scientific research for oover 20 years. I'm glad you're better now!!!
I’m glad you figured it out. I think I have this. I’m so tired of missing EVERYTHING. I’m sorry that you went through this. I’m currently looking for a solution.
I had it for 29 years and got diagnosed two years ago after a scintigraphy, but unfortunately I'm one of the people where cholestyramine doesn't work. Also can't take Imodium/ Loperamide, because I get the same pains as before I had my gallbladder removed. Got some tablets (Cholestagel) that work a little bit better than cholestyramine, (some days they work, some days they don't) but they cost over $500 dollars for 3 months use, which I really cant afford, especially when they can't be trusted. Was at my wits end until I got breast cancer and after all the treatments (NED now since late August) for the first time in 29 years I've now had one month without the crippling debilitating diarrhea. Still waiting for it to return, if it doesn't it's not a cure I would recommend anyone- Still it's like - wow - is this how normal people live? I can't believe it.
@peacefulminimalist2028 Thank you for this info. Please, are you still better? What do you think helped? Chemo? NED? ( I don't know what NED is). Other meds? My loved one is suffering.
@@DQ_Mine NED No Evidence of Disease. I’m not sure what caused me to have no diarrhea for a few months. Could have been chemo or either one of the targeted therapies I was on. However it’s back now and it’s not great. Been looking into studies and clinical trials of fecal transplantation. Not sure if it would help, but I’m willing to try anything.!
The NHS fails greatly when it comes to detective work. They look at you for 2 minutes, then prescribe pills. They can’t wait to get you out the door. If you tell them you think something else might be going on, you are met with this “I’m a medical professional and you aren’t” attitude. The NHS sucks, let’s face it.
i’m afraid this is the case everywhere. doctors here in the u.s. are dismissive and ready to apply the term “ibs” to anything, without good investigation. doctors used to be willing to pursue a challenge. not now…at all.
Same in the US and then they don't even write their reports correctly, just wasted $1000 to get absolutely no answers, referrals or suggestions...its ridiculous that we spend so much for insurance, that pays fir nothing, to find out nothing.
True in U.S. too as others have said. They assume your issue is whatever is most common. So quick to prescribe drugs. I was even prescribed a med that is contraindicated for a disease I have TWICE by different docs. So not even reading my chart. And they wonder why we feel the need to do our own research!
I have the same exact symptoms EVERDAY. I keep getting diagnosed with IBS. I have no energy, extremely tired and dizzy. I can’t imagine living the rest of my life like this. I can’t have a job like this. I’m so frustrated with how doctors in the US are. And on top of it I don’t have health insurance. I honestly can’t see living my life like this anymore.
If it helps anyone research the carnivore diet. Many people with IBS and autoimmune diseases including myself have experienced tremendous healing and even remission eating this way. It the one thing that is working for me.
I think it’s important for people reading this to hear that BAM has other symptoms. In addition to the pain, severe BAM can cause full blown incontinence. The colour of the liquid will be yellow to orange. And the odour will be “unnatural” and very strong (upsettingly so). The colour and the smell are what helps differentiate it from IBS. Although my stool samples always came back as “Appearance: Normal,” which was completely ridiculous. I am British and 39 years old. I was diagnosed with severe type 2 (idiopathic) bile acid malabsorption (BAM) about 4 years ago. I disregarded the NHS quite quickly (for the reasons you described) and went private instead. I was diagnosed in a few weeks, but it cost me around £6,000 in total. The private gastroenterologist was reluctant to order the SeHCAT test. Even when it was ME paying for everything. When the results came back as “severe,” I said: “See, sometimes Google works!” He wasn’t impressed. Most cases of BAM are caused by gallbladder removal, but (like yours) mine appeared overnight with no known cause. My SeHCAT retention is 3%. Idiopathic BAM is actually caused by our bodies producing too much bile acid. More than anyone could absorb. The overproduction is caused by low levels of a hormone that controls bile acid production. The hormone is called fibroblast growth factor 19 (FGF19). Unfortunately, taking FGF19 supplements causes serious liver damage. But the point is - the medical community ARE working on this disease.
@juliasmith866 Yes. Wasn't surprised at that specialist's reaction. It costs a lot of time and money to become a doctor and for a non-medical person to figure out their own problem is a blow to the ego. Someone more evolved could have thanked you for thinking outside the box thus saving time for both of you! Those folks are extremely rare. There are also altruistic doctors who really care about patients but were taught one way and haven't had time or inclination to learn something outside their comfort zone, such as thousands of years old Chinese Traditional Medicine.Their teaching used to be and perhaps still is based on a book published by Merck--used to be the largest pharmaceutical company in the world. Guess what was suggested for medical cures? Generally not folk medicine. Thank you for the information. I have never heard of that test or the cause. The 16th doctor I asked about this, over multiples of year, said it was due to excess bile and told me to take the powder, which didn't work out for me due to other problems. I feel for you, having to go through this.
To answer the question at about the 23:00 min mark, in my opinion, because they made so much money from your fourteen years. And had they diagnosed you so easily, it would have also been just that easy to diagnose the multitude of others going thru it, and all of us to follow. All of that easy income lost to them? ... they pass us around from colleagues to colleagues like the drunk virgin at a frat party. There's no money or careers in cures for the masses. Listening to your story I'm literally in tears, and my chest and throat are so tight I can barely breathe, both for you and for myself. I actually can imagine how painful it was for you to revisit those horrors in order to create this video, and for whatever its worth, you have my most heartfelt gratitude that you did. You may not be a doctor, but you've saved lives with this story. This video is three years old upon my finding it today. A drink of water and a second to catch my breath, because I've already seen that there's a part two. Bless you Amy. Thank you.
Thank you for your video. After watching your video, I suggested BAM to my Gastroenterologist and she prescribed me cholestyramine. My life has improved 100% overnight! Cheers from USA!!!!!!!
I was just recently diagnosed with BAM and am now on a sequestrant after 10 years of suffering. I almost cried during this video because you described my life and my experiences perfectly. One major difference is that I'm in the US. I have paid thousands and thousands of dollars year after year. I was not only sick, broke, but also suicidal. I had nothing to live for or to live on.
I was diagnosted with BAM here in Spain 2 weeks ago also, after 5 or 6 years. I thought that no one could understand what I suffered, until I saw this video. Although the powder treatment have an horrible taste, it has changed my life.
Had my diagnosis last week of severe bile acid malabsorption. Been misdiagnosed with IBS since I was a child so over 20 years ago. I was always told to "go on a diet", "lose some weight" "use laxatives" It is very frustrating! Thank you for posting and making people aware!
I have had stomach issues ever since my gall bladder was removed 30+ years ago. I totally understand the need to always know where bathrooms are and having to carry a change of clothes wherever I went. Just recently I discovered bile salt ( also known as ox bile) I take 1 tablet twice a day before meals. Almost over I noticed a huge difference in my bowels. I can now eat without having pain after only a couple bites or even feeling nausea and the pain and cramping is pretty much non existent. I am now 65 years old and really looking forward to having a very active life in my senior years. Best wishes to everyone that is going through this. Take care and God bless ❤
I've had my gallbladder removed 7 yrs ago. I was okay until a couple of weeks ago. I'm having gas, bloating, pressure in my chest and constipation. The doctor prescribed Famotidine 20 mg but is not helping me. Besides I don't want to take this medication for long term. Can you please tell me the name of the bile salt pills.
@@CynthiaEdmondLook up Dr Berg & gallbladder! He has a gall salt formula that I’m using! And he also recommends a different bile salt if his doesn’t work. There are very different kinds of bile salts depending on how your body reacts (& amount of acid in your stomach)
Thank you Amy for sharing your story. Everyone who suffers from an illness and must go through NHS doctors is facing the same dismissively attitude. They just want to push you out of the doors as quickly as possible and you feel abandoned with your continued symptoms that are misdiagnosed. You are left alone with stress and fears 😨 about your health, self medicating and very often feeling like you felt with these misdiagnosis.
My diagnosis came 8 months ago, after decades of IBS, the last two years have been a constant nightmare. My BAM may have resulted from taking the maximum dose of Metformin for almost two decades for Type 2 Diabetes. It didn't matter how close a bathroom was, I wouldn't make it. The diarrhea happened without any warning. Cholestyramine twice a day along with Imodium every morning is most helpful. In the past six months I've only had two horrific flare ups. What a relief from losing four days a week every week. I will be taking it for the rest of my life. Thank you so much for this video, it really helps to not feel so alone.
Don’t look at the common illness all the time . Also look out side the box especially when medication recommended is not working for the diagnosis. Please
I have self-diagnosed bile acid malabsorption. I've been trying to get treatment for these symptoms for nearly 10 years. Mine didn't begin at such a young age as this videographer's did, but my experience is identical. I am reaching out to you for any dietary advice, if you're willing and able. TIA!
@@deborasolum5324 A low-fat diet helps to reduce the symptoms of bile acid diarrhoea. Medicines that bind to bile acids in your gut (bowel) are usually very effective. Examples of bile acid binder medicines are colestyramine, colestipol or colesevelam. Colestyramine is the medicine most often used and is usually very effective., foods that soak up the acid helps , avocados. fatty fish, such as salmon and sardines. nuts, including cashews and almonds.
You are not alone. This is the rule and not the exception and it is shocking and gaslighting narcissistic abuse... How it is not illegal is beyond me... the dismissiveness in the medical field. Absolutely despicable crockery. I'm glad you pressed on and thank you for making this video.
Ever since the 2020 shut downs all medical offices have these signs up that say they will not tolerate any verbal abuse. That is because they have to abide by protocols that don't help people. The medical system so broken that it is mind blowing how dangerous it is.
Sending hugs for you ❤I have been having IBS since 12 but recently gotten sooo much worse, my dietitian asked me to check for bile acid malabsorption booked private gastro since NHS keeps saying “it’s ONLY IBS” I know how frustrating it is how people dismiss you, and as you say people don’t believe how painful is. I hope you feel better now
First day of Cholysterimine (?) First day of real relief in 4 years. Thank you for this video. I was diagnosed with Celiac and IBS and have been scoped in every orifice. I brought this up to my doctor after watching your video and he okayed the prescription. You are a wonderful woman and I hope you are doing well. I went out for dinner with my family tonight and didn't feel pain. I don't know if it's a placebo or not but it's a pretty startling difference in just a day.
I loved reading this! Sorry I didn't see it at the time. How are you feeling now? I've just posted an update video if you're interested :) ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
Hi Amy , just came across your channel. We are literally the same. I was told in my early teens I had ibs and was due to stress. I am now 30 and diagnosed back in 2020 during covid. I work for nhs and took me to work along other nurses to realise me going to the toilet 10x plus a day wasn’t normal ibs. You have to listen to yourself and others and basically stick up for yourself. We got this 💪🏻
This has been my life for years! I was just diagnosed with BAM yesterday! ( I’m 65)I had never heard of it but the biggest clue to my situation was my gall bladder had been removed. That should have been a red flag but instead I was told I had IBS due to stress! Thank you for your candidness!
@@amy_is_an_owl_OvO_ What's interesting for me is that I've had my gallbladder removed, I was prescribed cholestyramine, it worked, and my doctor still called it IBS rather than BAM. So they knew the exact diagnosis, but still call it IBS
I hope you got the treatment you needed! How are you feeling now? I've just posted an update video if you're interested :) ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
I found bile salts and tudca a while back...just diagnosing myself, doctors are no help at all! They should all be ashamed! They just want us sick so they can bill us and the insurance company for more and more tests.
I'm so sorry you're going through this, I hope it is at least some tiny bit of comfort to know that someone else knows exactly what you're going through ❤ how are you at the moment?
@@amypeachyt Thanks for the reply. I’m still battling. I’m trying an alkaline diet for now... seems to be helping a bit, I don’t know how it will be like to go back to eating “normal” food
I have EDS, another hard to diagnose syndrome. I was 44 before I was diagnosed. I feel your pain. I feel your loneliness and frustration. It's ok to cry. Those of us who understand weep with you.
Thank you Amy, for sharing your story, there are so many people like myself who've been diagnosed with 'IBS' an umbrella term for many gut/bowel problems, where as it's actually something else! Well done and all the best.
Hi Amy - this is exactly my experience of the NHS. I'm a nurse and have worked in the nhs for 23 years and have a great passion for it, but......I too was told I had IBS, and for over 25 years. I was finally diagnosed with bile salt malabsorption 4 years ago, after a burst gall bladder resulted in emergency surgery, during which I suffered a full respiratory arrest on the operating table. I always knew it wasn't IBS but wasn't listened to either.... Still have issues but at least I know what it is now. I empathise with your emotions, I really do.
Hi jojo, I work as a health care assistant ina hospital but am currently off work due to recently being diagnosed with severe bile acid malabsorption. I'm absolutely exhausted. And am still waiting for the tablets colesevelam to properly kick in. I'm wondering how you managed to work?. When I was working, I was running to the loo while being exhausted in work. I would have my 13hour shifts and not eat anything because my symptoms were so bad. I'm worried about returning to work and having that heavy work load. I'm wondering if you have any advice for me? Much appreciated xx
I’ve had my “IBS” and “GERDs” symptoms for 18 years. I don’t have flare ups that often but when I do I honestly just want to die sometimes. Thank you for this video. I am going to look into this.
I have even asked about this to my doctors and as you were - dismissed and doubted. I am very proud of you for doing this video.. Lots of love to you for your future to be happier.
I feel for you when some medical professionals do not treat women/ female patients seriously. Some think we are just overreacting, or some GPs suggested it was all in my “head”. But what I can say as an Asian woman, we are very tough- and would not go to doctors unless we’re dying (as we dont have NHS in the PH). I work for the NHS and after several “oscopies”, tests, hospitalisations and embarrasing flare ups- I finally got a consultation with a Gastro. He was very empathetic and listened to all my pains, I was very throrough with my explanation- and told him that I am not having a quality life due to constant stomach pain/ and diarrhoea (even with imodium). He acted fast, arranged an appointment with a dietician within the hour to help me sort a diet plan (helped a little- but still having daily pains and diarrhoea) and recommended for me to have the test in 6weeks. I just had a SehCAT scan earlier, and hopefully it helps them diagnose what the real problem is. You are right, IBS is not “Just IBS”- it’s a horrifying situation I would not want to wish on anyone. Bravo for your courage to persevere and help yourself. Sending love and prayers from Guildford!
Amy, OH MY GOD. Thank you so much for this video - Its so weird it is literately my story but with you telling it. My name is also Amy and my issues started when i was 15 and i have only just been advised by a specialist at 27 that i may have bile acid malabsoprtion i am being reffered for a SCAT scan - misdiagnosed all my life with ibs obviously and taking imodium nearly everyday to deal with the diarrhea! Having to take countless times off work with people not understanding why, cancelling plans, freaking out and being scared sh*tless to travel for long periods of time, stressing out my parents - I am crying while watching this. I really hope that i can get treatment now and get better.
I hope you've got the answers you needed! How are you doing now? I've just posted an update video if you're interested :) ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
You are so amazing and so strong for telling us all this horrible tragedy ! Seriously I feel like many doctors should start taking patients seriously instead of hiding behind their desks and not caring at all 😣 Amy you are such a strong woman it’s amazing to see how you’ve dealt with this ! 💕
Dear Amy, I have had your symptoms since I was a little girl. Most doctors and specialists eventually/mostly came up with anxiety and of course I was subscribed a range of meds. I then just in the last mont, visited a Physical Nutritionist who is venturing on IBS , dairy allergy, gluten. I eliminated everything and am eating relatively little. Still toileting up to 10 times a day. My daughter stumbled on BAM last night. This morning I watched your talk. This is me. Darling Amy, I now am going to have the SeChat test to see if that is it. I know it is. I am 71. I will let people know my results. Thank you Caroline in Australia
Hi Caroline, thank you so much for your comment. I am so sorry you have suffered for so long. Did you manage to have the scan? Sending lots of love from the UK! ❤
This is exactly what I have been dealing with for the last 20 years with the last 5 years of it being in so sick that I now stay in bed all of the time. I feel that I would be better off dead, I'm so tired of being so sick with this (IBS) that I truly have though of just ending it all, and thank God I found this video. Can you tell me how you are doing and if you are any better? And by the way I'm 67 and not able to even go to the grocery store or any of my other doctors or dentist appointments. I know I'm so depressed dealing with this I don't see any reason to keep going on . There seems like none of these doctors know what to do with me and I now am at the point I don't see anyone, I just stay in bed all day and use to work at a hospital as a patient specialist almost 18 years. I truly hope you are doing better and thank you for your sharing so I can find some hope in finding your post.Thank you again.
Hi Caroline, I hope things are going well for you. Just wanted to let you know that I've posted an update video :) Things are going well! ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
Thank you for sharing, I am only a year in but my experience of the NHS is in line with yours...and the waiting between appointments whilst your life falls apart is unbearable. The only thingbthat means they take me seriously was an episode of pancreatitis and substantial weight loss, the rest they make you feel like its in your head. Nobody has mentioned BAM so thank you, a new line of enquiry for me. I hope your health continues to improve x
Thank you so much for making this video. I was first diagnosed with IBS 15 years ago. It was incredibly severe. I ended up bedridden. I had the same dismissive treatment from doctors. I was once told to go to A&E by my GP. The doctor at the hospital examined me but my body was so tender by then I screamed in pain and he stormed out leaving the door to the corridor wide open as I layed half naked on the couch. I was in tears and was begging for someone to help me. The nurses wouldn't even help me ring for a taxi. My weight had dropped to 7 stone and I was in my mid 30's. This was my lowest point. I suffered for years but gradually got better (it probably wasn't quite normal but it was near enough normal considering what I had been through). I also had fybroids for years so sometimes it was difficult to know what was causing what. Now it has started again and is getting increasingly worse week by week and I dread what will happen to me. Will I lose my job? Will I end up bedridden? And it is not being taken seriously again. But after much research I now know about BAM which is how I ended up watching your video. My experience sounds like a carbon copy of yours. I have now been ill for 6 months and have been told I have to wait another 3 months just to see a consultant but they are going to redo the sample and blood tests "again". GRRRRRR!!!!! It is also so frustrating when they tell me I should be happy because they haven't found anything wrong with me and they don't understand that that just means left to suffer. So I am going to demand to see a Private Consultant and demand to be tested for BAM. Your video has been a tremendous help, seriously. Thanks again. xxx
My heart goes out to you. I cried with you watching this. I only discovered bile acid malabsorption three days ago after my worst fear almost came true while working with a client. I’m 58 years old, have tried every diet you can think of, and have been wondering how much longer I could go on like this. I gave up on doctors many years ago (in my mid 20’s). Back then although I had symptoms, diarrhoea was sporadic and not such a huge issue as it has been for the past 25 years or so. Your story is so much my story though regarding the anxiety and the emotional part of this. I’m now eating a carnivore diet (what I thought was my final option) and that is what brought this to a head and has allowed me to find this answer. I’m about to try managing this with natural remedies so wish me luck. Thank you for being so honest and vulnerable. It’s incredibly hard to do. I really hope you continue to improve and get over this. The hardest part to get over is the anxiety and fear of a flare up happening but I hope with time that can happen.
It could have been me writing that. Carnivore as of July 25th out of desperation. In midstream of testing. What natural remedies have you heard of, please?
On my 4th time watching lol. Would you mind putting IBS in the title so people looking for answers will come across this video. This NEEDS to have the awareness spread. I had a 3%absorption rate when it should be 15
I'm so sorry you went through that, but so thankful you made this video. It took me 26 years to get diagnosed with endo/ado. While the diagnosis was different, the doctor- hopping, the dismissal, the being diagnosed as IBS and the IBS being downplayed and not understanding anything, and the fear and confusion, all of it. My experience was different, but I relate so much to yours.
First of all, I want to say that you are so brave for putting your story out there. I was recently diagnosed with Bile Acid Malabsorption last June after being in hospital for 3 weeks with chronic pain and a lot of other symptoms. I had been misdiagnosed for seven years. I was 18 when I got a proper diagnosis but for those seven years, from the age of 11, I was out through consultant after consultant. I was told countless times that I was making it up for attention, that it wasn’t that bad etc. I felt like no one believed me and that I was going crazy. I felt so alone and helpless. Until one amazing consultant in June believed me, cared about helping me and diagnosed me with BAM. But I look back on all of it and wonder how I got through it. I missed out on my teenage years, I lost all friendships and became isolated because the illness was so debilitating. Thank you for sharing your story. It doesn’t make me feel so alone. I agree that word needs to be spread about BAM and the stigma of getting diagnosed around it. I will pray that you continue to get better. Xxx
Amazing! I know it's odd to congratulate someone for having a diagnosis but I know how relieving it is to finally KNOW. How are you getting on with the Questran?
I'm not liking it. So I'm trying psyllium husk and it's working just as well. Its a natural product which does the same job. No nasty side affects. You should join the BAM Facebook page. There are 3 on there. Its just so nice to share stories with others. X
Thank you for you video! 15 years of pain and misdiagnosis! Ruined my career, marriage, and mind! Thinking about removing gallblader. Had extreme malnutrition, multiple hospital visits. Docs have NO idea!
Thank you, @AmyPeach for telling your heartbreaking story. I feel for you, having had the same treatment form doctor and specialists. Happy your story had a happy ending, at long last.
You have just saved my life!!!! I too have been missing diagnosed for years. I finally know what tests to ask for at my gi appointment Monday. I was almost ready to give up on life. The quality of my life was very bad. Thank you!!!!
This hit so close to home!! I got my gallbladder taken out when i was 18, im 24 now, and ever since then i have had the worst pain, the worst stomach aches, having to go to the toilet so often in the worst possible times that I felt so sad and isolated, honestly never talk to anyone about it other than my family who turned it into a running joke. Finally, five years later after having gone to many, many doctors I finally received an answer without being dismissed or being told everything was 'fine.' I literally got diagnosed last week, and honestly for the first time in a really long time I felt like I wasn't going crazy or that my body just hated me, there was a reason for everything happening. Sadly, in Ecuador where I live, medication isnt available to treat this right now which is gutting honestly, but at least I know now that there is something to help and I have a diagnosis which puts my mind at ease a little. It's conditions like these where you cant really talk to anyone about that make it so hard to live normal life and it ends up being the thing you think about the most instead of enjoying life. Im glad you finally got an answer and youre working through it!! my best wishes and congrats on your pregnancy :)
In the ibs group forum they say you can use calcium carbonate for BAM. I will try it out myself soon. Maybe it‘s something you can look into. A lot of brands have it, so maybe you can buy it in your country :)
Amy i just want to say one thing: thank u, this video is very, very helpful, ithas been helpful for me and i'm sure it's the same for a lot a lot of other people❤❤
You have just summed up my life so accurately between the ages of 18 to 28 that it's spooky! All the frustration with GPs and never being taken seriously. Avoiding social situations and panic over long journeys. Having to wave goodbye to a career that I loved. I share the same emotions and feel that much time was wasted in what should've been the best years of my life! (Sounds dramatic, but if you know, you know!) I'm honestly so grateful to the gastroenterologist at Royal Berks Hospital that FINALLY took my seriously, after 10 years of battling with GPs, and sent me for a SeHCAT test. Literally the next day on binders was the best day I'd had in a decade! Like you I'm still managing the condition and finding my way but hopeful for the future. Thanks so much for sharing your experience!
Tim Edwards, may I ask which binders you took back then and do you still take them now? Also UA-cam isn’t showing me replies to my comments so if you “like” it, then I’ll know you replied! I would really appreciate the name of the binder, I’m in hell with this and have a spinal cord injury and am paralyzed from the waist down on top of it and can’t get to the toilet fast enough.
I have a similar story after having pancreatitis and my gall bladder removed. Pancreatitis again two years later and eating has never been the same. This was 22 years ago and I am waiting to see a gastroenterologist now! I have been diagnosed with bile reflux with stomach erosion. Similar systems that made travelling difficult and many unexpected flare ups. Lots of tears when at the doctor. I hope I get answers like you did.thank you for sharing your story. You ar not alone in your struggles!
This is literally my story... wow! It's uncanny how much my story matches yours... I had a recent check in with an IBD nurse who asked me if I told my GI I had my GallBladder removed, I did, the very first appointment I had and he dismissed it... she thought this was strange and booked me straight for the test! I'm currently waiting on a SeCHAT scan, I'm praying that something comes of it because I'm fed up with this pain! Much like yourself! Thank you for sharing your story!
A very inspirational and well put together video. I have experienced the same. It took me 45 years to get diagnosed. Lots of “ it’s just IBS” . It all comes down to cost I’m afraid. But the suffering is so wrong. Unfortunately Doctors don’t even know what this is when you return from your consultant. So they are still messing my situation up. One doc told me I don’t need them. I am researching as am worse then ever and I believe it’s because you can’t take Questran then just stop them . I’m glad they have helped you. Never be ashamed of getting upset.
I appreciate your vulnerability and sincerity in this video! It took 12 years for me to practically diagnose myself with BAM and ask for BAS after being told by a GI it was definitely not the cause of my symptoms. Many doctors(Gastros) have been so insensitive and don't seem to understand that the gap between appointments(6 months or so) is daily pain for those with IBS, so there being no hope of improvement and diagnosis coming out of appointments can be so debilitating. My symptoms included the almost constant pain, but the worst and most controlling part was the false urgency. Soon after eating, I would feel a surge through me and run to the bathroom but would not be able to go. I would have to live around the toilet until I was finally able to go(sometimes over an hour), and it was almost always diarrhea when it finally happened. Some GIs tried to tell me this was constipation, but it really never felt like that. I've spent weeks of my life on the toilet with urgency, unable to go. It got to the point where I developed an eating disorder, although no Dr. I've had seemed to think it noteworthy. I would not eat until I got home from school, no breakfast or lunch for a decade. I would go to basketball practice after not having eaten all day. I had, and continue to have, such a terribly fickle relationship with food, which should naturally be a positive one. I also lost my appetite and hunger almost entirely about 2 years before I started BAS, and I was told to "just eat," and that I couldn't be given appetite enhancers unless I had HIV or cancer; meanwhile, I was going 2 days without eating and would only do so out of necessity. I also had to resolve that on my own(found correlated vitamin D and B12 deficiencies and asked for tests), and I'm somewhat there, but not all the way. It makes me angry and sad having lost all those years of my life that could have been spent exploring and developing my personality. Sometimes I wonder if who I am is actually who I would have been without all of this, whether I'd be more outgoing or sociable. I missed so many opportunities, including a couple trips to Europe, just out of fear of eating something and not being near a bathroom. And even if I was near a bathroom, would I have urgency and not be able to go. I was in constant fear and hyperaware of my gut and how it felt. You really don't get much compassion either. I've been bullied by teachers for excused absences and talked down to by doctors; one tried to convince me that I was so sick in the morning because my anticipation of feeling sick induced it, basically a modern chicken vs. the egg argument. All it would have taken was more humility on my Drs.' parts to acknowledge that they are not aware of every illness(although it was discovered decades and decades ago) or more effort by my parents early on to search for any possible, treatable cause like I eventually did, or, most importantly, perhaps, a country that does not treat its citizens and their illnesses as commodities from which to profit. I truly believe that, at least in the USA, more effort isn't put into diagnosing and considering underlying causes to IBS because of how much money IBS patients bring in with wasted tests(multiples of the same every time you switch doctors) and constant visits(20%+ of gastro visits if I'm not mistaken), not to mention trips to the ER, which are incredibly pricy here. It is a virtually "safe" group of symptoms and illnesses for most doctors to refuse to sincerely try to treat because they are not life-threatening. Multiple studies are showing the prevalence of BAM in IBS to be at least 1/3 of those with IBS-D and around 1% of the Earth's population. It needs to be addressed clinically and in school. So many things you said in this video were word-for-word what I have been telling people for years about the hole-ridden umbrella term that is IBS. Thank you again for putting this out there!
bless you to bring this to light this, doctors upset at me for expressing what i wss going though loudly in the office and told to talk softly and the living with this uneasy married to the bathroom. these doctors are still giving me the run around. bless you
Going through this now. The many dismissive doctors over the years have had me give up more times than I can count but its only getting worse. Some episodes land me in the hospital and STILL no one can figure it out. Hope you are doing better. I'm glad you got answers finally ❤
Hey emy I just finished watching you and I only can tell you to keep fighting for your life never give up always get the information of what is what and don't panic learn why your digestive system is working that, for só many years doctors been telling me that I have IBS. Keep being brave.
Was diagnosed with BAM after 30 years (yes, I mean it, 30 years) of symptoms. Have now been prescribed Colesevelam so hopefully my endless suffering will be reduced or ended.
I APPRECIATE YOU. THIS WAS A BIG UNDERTAKING FOR YOU TO DO. I AM ANXIOUS TO HEAR YOUR NEXT UPDATE. I WAS FINALLY DIAGNOSED WITH SLUDGE IN MY GALLBLADDER. NOW I HAVE THE CHOICE OF WAITING FOR ANOTHER FLARE TO DECIDE IF I SHOULD HAVE MY GALLBLADDER REMOVED. I AM 73. I HAVE BEEN THROUGH HELL WITH AN IBS DIAGNOSIS FOR YEARS AND A PILL TO CALM MY PAIN, NOT. I AM HAPPY FOR YOU TO BE BETTER BUT I KNOW YOU HAVE A ROAD TO TRAVEL.
Thank you for your video. I am from Toronto Canada and have suffered for 12 years of not teavelling, missing celebrations etc until I had Agoraphobia and letting it affect my mental and emotional state. I finally found a doctor who would spent 2 minutes actually listening to my story and he has perscribed a binder for BAM. I hear your emotion amd frustration and although I am sorry you went through all that I am comforted to know I am not alone. Thank you again and Many Blessings
I too was diagnosed with IBS. I immediately understood this to be a copout. IBS is just a bunch of symptoms with no other definitive diagnosis. I too had multiple tests over several years and tried excluding several foods in an attempt to control symptoms. Ultimately I did my own research and found relief from things I learned from others experiences online. Thank goodness we now have the ability to do this ourselves. I am incredibly happy you were able to find a Doctor who was able to help you. Cheers to good health and happiness!
Thank you Amy so much for sharing your story. It's through hearing from people like yourself who have suffered with a misdiagnosis that I've been able to suggest to doctors what is wrong with me. I'm mid way through a SehCAT scan right now, which I'm hoping with lead to treatment. Thank you for sharing your feelings so candidly, I've often felt the same. I can't imagine how hard it much have been for you as a teenager, I'm so sorry you had to wait all those years to receive proper care and diagnosis. All the best and thank you again xx
What a beautiful video and your story is identical to mine. 17 yrs of wrongly diagnosed with IBS, many doctors with not really caring, pervasive surgies, diets, loved to travel but stopped long ago, couldn't eat a public places bc of my flare ups, brought me so much anxiety and panic attacks. Im trying Questran for my 1st time today. I hope and pray this will change my life and i can go back to my real self. 🙏
@Mary Hawker HI, so it actually did help for like the first 3 months and then went back to normal IBS. But I realized the only time I dont have any IBS, 0% is during Ramadan when I'm fasting. I swear, the feeling I have during this month with my mind, especially my stomach issues are gone. However, it comes back after.
I have been suffering with IBS for many years and I either have diarrhea or I'm extremely constipated. Like you, I have stomach aches daily and am truly fed up. I so appreciate your video and am sorry for all the years of extreme suffering. I wish you the best.
Sending love and healing vibes ❤ I know how it feels. It sucks. Just know it will come to an end and you should do whatever you need to do to feel better. I hope this flare is a short one xxx
Thank you so much for this video! I have a similar story! mine started when I was 13 as well. They diagnosed me with IBS for 10 lovely years, I went to soooooooooooo many doctors before someone took me seriously. Finally I got diagnosed with ulcerative colitis. It's because we're young women, they think we're faking it/have low pain tolerance. I'm so glad you've been diagnosed!
My heart goes out to you Amy! Mine took 6 years of the diarrhea from HELL to find out it was BAM. What a nightmare! It is still hard to regulate and I have bad days, and yes, you feel so awful when it happens that it does feel like you are dying! I would not wish this on my worst enemy!!! Hang in there Amy!!! You are not alone.
Thank you for sharing your experience. It’s scary how similar your journey is to mine. How are you doing now? A few years later. I started having issues in my early teens and I’ve done all the stuff you have been through. I can relate so much when you mentioned that you would gladly do any test they offered as it maybe was a solution of all this, but in the end it just caused disappointment. My life has been so hard missing out on getting friends, the job I wanted and so much more. I for some reason came up reading about BAM and then found this video. I think it’s a mystery no doctor have ever mentioned this for me. I feel sad that I have to be my own doctor. I will bring this up for discussion and see what they say. I’ll never give up trying to get better. I’ll keep you updated! / Andy
@@maryhawker5003 I’m diagnosed with ibs and chronic diarrhea but I got some bile acid medication prescribed (Colestid) after discussing this with my doctor. It has really helped with my symptoms! I rarely have these panic diarrhea moments that I had so often before the medication. I have some side effects though from time to time with nausea and bloating but it’s like night and day for me with the medicine. It feels like I can live life better and not being so restricted anymore.
This sounds familiar. At the age of 9 I was wrongly diagnosed with IBS. At 22 I was correctly diagnosed with bile acid malabsorption and I have been on bile binders ever since( now 52). I only have a problem if I forget my bile binder . The difference between IBS diarrhoea and bile acid diarrhoea is it feels like pooping lava.
Just watching your video (3 yrs after you posted it) after recently being diagnosed, after 30 years of going from doctor to doctor. I’m now waiting for my pharmacy to restock so I can begin the medication. Thank you! Thank you!! for making this video & sharing. I commend you for being able to politely share what you went through. I do not think I could have been so calm, because I know all too well what a “flare up” involves and how embarrassing & overwhelming it can be when an accident happens. This illness just sucks the joy and life right out of a person. Last week I told my daughter that I didn’t want to die, but honestly, I just don’t think I can continue to live like this anymore. ~ Your video gives me hope that with the right diagnosis and medication, I will have some normalcy! Thanks again for sharing! I truly believe open dialogue about health issues that we struggle with and all the difficulties (as well as things that bring us hope) help us heal. Praying the medication will be a game changer!
I've had to come back here after my second sehcat scan... I too have the bile acid malabsorption. Ever since I was young I never believed it and found out about it and found your channel through research. Amazing how I'd seen 4 doctors over a few years about it all told me IBS. I was having something else investigated and asked for the sehcat which has given me a diagnosis. Thank god! 🎉🎉
From my own personal experience, there’s a lot of misdiagnosing going on in the medical field these days. Not all doctors are bad, but there are some they are. Careful out there.
I love you for making this video. I've had stomach problems 'IBS' since I was a child. Buscopan does absolutely nothing for me either. I take Nexium every morning & night. Doctors are soooooo dismissive regarding stomach/intestinal problems. My friend had Crohns & it took years for them to diagnose her at which point alot of damage had been done. This was in the early 2000's. You poor thing having to go through that. 😘
I hope you've managed to get some relief from your symptoms x I've just posted an update video if you're interested :) ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
i’m crying after watching this video, i relate so heavily to everything you’ve said and feeling dismissed by every single doctor i’ve seen just becasue i was a young girl with IBS. started stomach complaints at 11 years old, 22 now and i’m so tired of dealing with this pain that’s only getting worse at this point. i’m 99% certain i have BAM as well and i feel motivated to go again and ask for specific testing for this disease, so tired of feeling like crap and having no medication help me
i also never wanted to tell people i had IBS either cause everyone seems to think it’s not that serious. the pain i have is so unbearable sometimes that i can’t get out of bed and telling people i have IBS just made me seem like an attention seeker…
I've had bowel issues since I was about 13, I'm now 30. My brother has Crohns, and my Dad recently got diagnosed with Stage 4 bowel cancer. For the last year, I've been to gastrointestinal places for tests, many many tests. I finally got sent for a Sehcat scan a week or two ago, and they've just diagnosed me with Bile Acid Malabsorption. I feel your pain throughout all of this video. It's tough, however given that my Brother has Crohns, I would have expected them to fast track everything to find out what my issue was. :(
Hi Amy, your story really resonates with me.. I know the hell that you’ve been going through only too well. I was diagnosed with IBS 26 years ago! For years I’ve been trying to get the GP to understand that there was more to it than “just Ibs”.. I sadly lost my daughter when she was just 15yrs old & my severe flare ups were put down to child loss! I finally got referred to a gastroenterologist as my abdomen pains have been horrendous & my life has become very unsociable due to my life revolving around the toilet. I am unable to go out alone & Motorways are a definite no no. I have a toilet first aid kit in the car for long journeys! I also have a blue key which is very useful should I be stuck somewhere in a queue. I’ve had many tests, all are fine! Medication (buscopan was useless) includes mebeverine, codeine, loperamide & more. I’ve received a letter from Stafford hospital stating that the consultant is more or less certain that I have BAM & he’s ordered a seHCAT scan to confirm it.. I know it’s not ibs, I’m on sleep medication & get woken in the night with urgency! The burning is like acid, the pain is unbearable most days. Anyway, I’m so glad that you finally got an answer & are on a slow road to healing somewhat. I really hope I do too! Take care & thanks for sharing your story. Anita X
I can relate to this so much. 😢 I have had “IBS attacks” with pain so bad, that I’ve felt like dying wouldn’t be the worst option. Having fibromyalgia, joint hyper mobility syndrome, anxiety and depression, I feel I am dismissed by my doctors every time I see them. “Oh it’ll be your anxiety.” “It might just be your pain tolerance.” “It’s JUST a functional thing.” It’s so disheartening and incredibly hard not to lose hope. I try not to go to the doctors now, as I’ve lost confidence in them, and in my own experience of what is going on with my body. I’m so sorry you’ve had such an awful time with pain and I’m so glad things are looking a lot better for you. I hope it continues. 🤞🏻 x
Hi - I can totally relate as I also have fibro, EDS/hypermobility and deal with anxiety + depression (as a result of all the pain). I know how difficult it is when you aren't being listened to but you deserve to be helped! I would really urge you to try a new doctor and maybe even ask about Bile Acid Malabsorption. Even if you don't end up having it, I think it's worth discussing. Do you have anything that helps you during bad flare ups?
Amy Peach I have oramorph for when the pain is so bad I can’t leave the bathroom and I take antispasmodics everyday, but when a flare up happens it’s still a case of waiting for it to pass. Thank you so much for the helpful video. I will definitely try to build up a bit of courage and see another doctor ❤️
@@missdb211 Imodium Plus works well for me when flare ups are starting, it helps stop them from going on for so long. Good luck with the doctor, happy to chat further if you need an ear! X
I’m a nurse in the US and I have absolutely no use for 99% of doctors. Nine years ago I awoke with mind numbing pain in my shoulder blade that radiated down my arm. Saw many doctors, chiropractors, therapists, ect. to no avail. After an MRI it was decided that the source of my pain was coming from my cervical spine. I ended up having a fusion of 3 vertebrae with no relief, a spinal cord stimulator with no relief, and so many injections it’s a wonder I didn’t spring a leak. Lost the ability to work, lost my friends, and my life, suffering unrelenting pain, unable to perform even the simplest of tasks without severe pain. Not long ago, I saw a new doctor for something unrelated and just happen to tell him about my severe arm pain. He walks around the table I was sitting on, asks me to lean forward and presses on my back asking ‘is this where it hurts’. I exclaimed yes! That’s where all the pain is coming from! Turns out, all this time I have had a rib that is out of place!! I was elated that finally!!! someone was actually listening to what I was describing and knew what the problem was but pissed off at the needless suffering, surgeries, and loss of nine years of my life due to incompetent healthcare. I now understand why it’s called ‘practicing’ medicine.
I literally thought of making a video like this. Im always stilll healing but i was in anorexic conditions not sleeping or able to digest a thing and pumped with antibiotics for no reason! 2 years fully bed ridden. Treated so poorly by NHS nurses in hospital too ;( it makes me so angry that i was left alone to figure this out. Increasing stomach acid and probiotics saved my life! Not a single GP mentioned any of these.
Bless you for sharing your journey….it took drs 36 years to figure out I had Celiac Disease. Was told I had IBS over & over, had two surgeries for acid reflux (and I still have reflux) I’m now 72 and most of my adult life was hell because of the amount of time I spent in the bathroom (and I didn’t always make it there in time)….many times I thought my insides were going to be pulled out of my body while I was on the toilet the pain was so severe. I’m going to look to see if you have more videos after this one with better news. I was crying with you. Praying you have continued to get better since this video. 🙏🏻🙏🏻🙏🏻🙏🏻
That’s modern medicine for you. Doctors think that because the have degree in medicine that they know everything and always gaslight their patients. I’m happy that you were finally able to get the right diagnosis after all these years.
I just wanted to comment and validate this. This is SO TRUE!! Same thing happened to me!! I was in so much pain. I had to take a leave of absence from work and school!!! I had to move back in with my mom!! This needs to be discussed and it causes morning sickness too!!! I am sensitive to oxalates, malabsorption, sluggish bile and liver problems!! I went to a specialist and they could not find what was wrong! For me taking prebiotics, apple cidar vinegar, digestive enzymes, lemons, l-glutamine, ps5 b6, hcl, milk thistle and ox bile is my routine for minimizing my symptoms. I’m traumatized by my pain. I have a phobia because of this illness!! I also have mthfr. Avoid high oxalated foods and eat things like sardines to help flush out oxalates. Heal the gut! Thanks for sharing this.
Thank you so much for sharing your story despite the pain and difficulty in doing so... You have been so brave, and I know You've already helped far more people than you can imagine. ❤
Questran changed my life and my families life. I also went through hell for years with dismissive doctors and tests. Doctors took my healthy gallbladder out and after I started Questran for bile diarrhea. I think it was bile diarrhea all along. My mom and sister also had same issues and take Questran powder. Doctors over dx IBS. We had this for years with no answers. I had awful diarrhea in college and young adult years. I knew every bathroom and hated traveling. Questran gave me (and my family) a life back. I wish I would have never allowed them to remove my gallbladder.
@@cupcakepaper6523 Ah, I see.... that is a shame... tablets are so much easier than mixing up those gritty sachet powder with orange juice! I am glad you found Questran worked for you. I have had multiple surgeries for Crohn's disease from age 27 and sympathise with your symptoms - people don't really understand when you tell them you need the toilet 50 times a day! ..... I was lucky I had fantastic Gastroenterolgists and Surgeons and Colesevelem has helped a lot.
I understood your emotions. So far I think I have IBS but luckily I don’t get severe cramps. Waiting on scan to see if it is bowel infection. I hope like you I finally find out cause of my depression,sore legs, lethargy. You are so brave and charitable talking about it openly. I wish you great health in future. Thanks❤
Medical gaslighting is becoming very common these days. For me the most insulting thing was not the doctors telling me that I have psychiatric problem and not gut problem, for me the most painful thing was my own parents saying that I am making all this up because I am a lazy bum and don't want to work and move up in my life. Eventually I was diagnosed with pancreatic insufficiency which also caused chronic intestinal inflammation. If a doctor is unable to understand your case it's very easy for them to say that it's all in your head and you need psychiatric evaluation.
Hi did u mean u have pancreatitis or enlargement in pancreas , am having bad anxiety these days One of my scan report tell me my pancreas not doing well
@@HarpreetKaur-ti2xp I had had acute pancreatitis 18 years back. May be that has caused pancreatic insufficiency. You should get your pancreatitis treated ASAP. Also avoid oily-fatty food. Anxiety will not solve any problem
You’re very brave to share your story. Unfortunately I am pretty sure it’s a common scenario. I think you’re being very fair about your experience of the medical profession. They are SO behind… clueless when it comes to the gut. “IBS”… what about finding an underlying cause. It’s an agonising & protracted, lonely journey:-( The pain alone you suffered is appalling. You will be helping others!
$100 a month in the USA for the little packets and I was misdiagnosed for 32 years. The USA is even worse. I've been through hell, still no good solution for me.
@@amypeachyt Cholestyramine has been absolutely life changing. I'm also now working with a Naturopath to try and uncover the root of the problem since I feel the medication, while amazing, is really just a bandaid solution.
@@amypeachyt Hard disagree. $100 is absolutely peanuts for 99% of first world people if you're honest about it. Your quality of life is at stake! Sell your iphone, give up netflix, work 3 hours a week at min wage. Don't enable this kind of victim mindset. If $100 a MONTH is not a "good solution" then there is no good solution.
Amy, you aren't going to believe this but I have had the exact same experience as you. I know how severe the pain is. I was misdiagnosed for 21 years. Believe it or not my case was even worse because my Gall Bladder was removed (which is needed to regulate the bile) and I had intestinal surgery that re-sectioned my ileum, which is the part of the intestines that is suppose to recycle the bile back into your body. In a normal person 97% of the bile coming from your liver is absorbed back into your body and only 3% makes it to your large intestine. In your case (and mine) most of the bile was going on through our colons. People don't understand what you mean when you say it burns. They don't understand that it is a true chemical burn on your butt caused by the hydrochloric acid from your stomach shooting through you bowels 10 time a day. I finally gave up on the doctors and started doing my own research. I'm a nuclear engineer. I understand technical terms and processes. I started studying medical journals, medical procedures, etc. etc. etc. And I found a solution. It's not a cure but so far it has been working remarkably well for me. Let me explain how and why it works. As you know you have to take something to absorb the excess bile that is not being recycled back into your body so it can pass through your large intestine more easily. The medication you are taking now does that but it's awful stuff and doesn't always work the same way every day. The effectiveness of the "product" taken to do this is determined by the ratio of soluble and insoluble fats that are in that product. (in your case suspension powder). There is a regular food that has the perfect ratio of fats that is exactly right to correct your problem. This sounds so stupid simple that you aren't going to believe it. But it's true and it works. Here it is ..... Eat 10-15 pecan half's at night before you go to bed and 10-15 more, either with, or right after breakfast in the morning. That's it. Stop what you are taking for at least one day and try the pecans instead for 3 days. You will notice the difference immediately. And it is all natural. Try this before you respond. and then do whatever you can to get the word out. You and I both know what it's like to live with Bile Acid Malabsorption. We need to do everything we can to save other people from the pain and agony we both understand.
Don Dattilo
San Diego, CA. USA
I’ll try it out as well. Thanks for sharing!
@@richardlopez4318Any success?
@@richardlopez4318 😮 Shockingly surprising simple nuts can help. Do you have to soak the nuts
before hand ?
Omg. I will try this thank you
Is it possible to use walnuts instead?
My daughter was using a public one room bathroom, and I was next in line, when a woman with IBS got in line behind me. I took notice as to how much pain she was in and pounded on the door, telling my daughter to get out because there was an emergency. That woman found me later in the store and made me feel like I as a super hero for such a small act of kindness.
Just had a CT scan, the first of many tests…my doctor thinks I need a therapist and antidepressants. Apparently, we can’t cry when we are past frustration.
You’re story sounds exactly familiar to me!
Look at estrogen dominance. It can cause gallbladder issues
Yeah it’s the same here in the U.S. It’s awful that these egotistical jerks are everywhere in the medical field. There should be a huge psychological exam for people entering, progressing through, and graduating into any medicine.
Thank you so much for sharing your story. I’m currently going through the same thing going from jerk doctor to jerk doctor. I feel alone as well and now I know that someone else understands and knows what it feels like.
This is why I haven't even gone in! I suppose I should just go in for initial bIudwerk/panels to be done and then have info for my own online searching. I don't have the money to be tested on with wrong treatments that will cause new problems
I went through the SAME EXACT thing for the past 5 years. I’m a doctor myself and it’s been so so tough to get anyone to listen to me. I finally took Colestid and figured it out. I lost relationships, missed events, missed 5 years of my life because of this but we’re here better than ever. I’m here for you! Thank you for sharing your story
Maybe would Psyllium Husk be better?
Had a gallbladder surgery and always had "IBS", I'm thinking maybe this is what I've had all along.
OH yeah, I've been studying medicine, reading scientific research for oover 20 years.
I'm glad you're better now!!!
I’m glad you figured it out. I think I have this. I’m so tired of missing EVERYTHING. I’m sorry that you went through this. I’m currently looking for a solution.
I had it for 29 years and got diagnosed two years ago after a scintigraphy, but unfortunately I'm one of the people where cholestyramine doesn't work.
Also can't take Imodium/ Loperamide, because I get the same pains as before I had my gallbladder removed. Got some tablets (Cholestagel) that work a little bit better than cholestyramine, (some days they work, some days they don't) but they cost over $500 dollars for 3 months use, which I really cant afford, especially when they can't be trusted. Was at my wits end until I got breast cancer and after all the treatments (NED now since late August) for the first time in 29 years I've now had one month without the crippling debilitating diarrhea. Still waiting for it to return, if it doesn't it's not a cure I would recommend anyone- Still it's like - wow - is this how normal people live? I can't believe it.
@peacefulminimalist2028 Thank you for this info. Please, are you still better? What do you think helped? Chemo? NED? ( I don't know what NED is). Other meds? My loved one is suffering.
@@DQ_Mine NED No Evidence of Disease. I’m not sure what caused me to have no diarrhea for a few months. Could have been chemo or either one of the targeted therapies I was on. However it’s back now and it’s not great. Been looking into studies and clinical trials of fecal transplantation. Not sure if it would help, but I’m willing to try anything.!
The NHS fails greatly when it comes to detective work. They look at you for 2 minutes, then prescribe pills. They can’t wait to get you out the door. If you tell them you think something else might be going on, you are met with this “I’m a medical professional and you aren’t” attitude. The NHS sucks, let’s face it.
i’m afraid this is the case everywhere. doctors here in the u.s. are dismissive and ready to apply the term “ibs” to anything, without good investigation. doctors used to be willing to pursue a challenge. not now…at all.
Same in the US and then they don't even write their reports correctly, just wasted $1000 to get absolutely no answers, referrals or suggestions...its ridiculous that we spend so much for insurance, that pays fir nothing, to find out nothing.
True in U.S. too as others have said. They assume your issue is whatever is most common. So quick to prescribe drugs. I was even prescribed a med that is contraindicated for a disease I have TWICE by different docs. So not even reading my chart. And they wonder why we feel the need to do our own research!
They told me to. Nothing wrong with you
I dont have bile flow and I don't digest any oils. I have bile reflux to. I truly believe bile issues
I have the same exact symptoms EVERDAY. I keep getting diagnosed with IBS. I have no energy, extremely tired and dizzy. I can’t imagine living the rest of my life like this. I can’t have a job like this. I’m so frustrated with how doctors in the US are. And on top of it I don’t have health insurance. I honestly can’t see living my life like this anymore.
Hey I know your comment was posted a while ago but I just wanted to say that I know how it feels to get to that point. How are you doing right now?
My son had the same symptoms. He's been taking psyllium husk every morning, and it's helped him tremendously.
I hope you find some relief soon...
Same
Anastaia, how ypu feelng these days??? Every have a HIDA gallbladder scan???
If it helps anyone research the carnivore diet. Many people with IBS and autoimmune diseases including myself have experienced tremendous healing and even remission eating this way. It the one thing that is working for me.
I think it’s important for people reading this to hear that BAM has other symptoms. In addition to the pain, severe BAM can cause full blown incontinence. The colour of the liquid will be yellow to orange. And the odour will be “unnatural” and very strong (upsettingly so). The colour and the smell are what helps differentiate it from IBS. Although my stool samples always came back as “Appearance: Normal,” which was completely ridiculous.
I am British and 39 years old. I was diagnosed with severe type 2 (idiopathic) bile acid malabsorption (BAM) about 4 years ago. I disregarded the NHS quite quickly (for the reasons you described) and went private instead. I was diagnosed in a few weeks, but it cost me around £6,000 in total. The private gastroenterologist was reluctant to order the SeHCAT test. Even when it was ME paying for everything. When the results came back as “severe,” I said: “See, sometimes Google works!” He wasn’t impressed.
Most cases of BAM are caused by gallbladder removal, but (like yours) mine appeared overnight with no known cause. My SeHCAT retention is 3%.
Idiopathic BAM is actually caused by our bodies producing too much bile acid. More than anyone could absorb. The overproduction is caused by low levels of a hormone that controls bile acid production. The hormone is called fibroblast growth factor 19 (FGF19). Unfortunately, taking FGF19 supplements causes serious liver damage. But the point is - the medical community ARE working on this disease.
I've just posted an update video if you're interested :)
ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
@juliasmith866
Yes. Wasn't surprised at that specialist's reaction. It costs a lot of time and money to become a doctor and for a non-medical person to figure out their own problem is a blow to the ego. Someone more evolved could have thanked you for thinking outside the box thus saving time for both of you! Those folks are extremely rare. There are also altruistic doctors who really care about patients but were taught one way and haven't had time or inclination to learn something outside their comfort zone, such as thousands of years old Chinese Traditional Medicine.Their teaching used to be and perhaps still is based on a book published by Merck--used to be the largest pharmaceutical company in the world. Guess what was suggested for medical cures? Generally not folk medicine.
Thank you for the information. I have never heard of that test or the cause. The 16th doctor I asked about this, over multiples of year, said it was due to excess bile and told me to take the powder, which didn't work out for me due to other problems. I feel for you, having to go through this.
yes; just had gallbladder out & this diarrhea is like no other - can't get Dr. to take this seriously! They just say take immodium...ridiculous!!
To answer the question at about the 23:00 min mark, in my opinion, because they made so much money from your fourteen years. And had they diagnosed you so easily, it would have also been just that easy to diagnose the multitude of others going thru it, and all of us to follow. All of that easy income lost to them? ... they pass us around from colleagues to colleagues like the drunk virgin at a frat party.
There's no money or careers in cures for the masses.
Listening to your story I'm literally in tears, and my chest and throat are so tight I can barely breathe, both for you and for myself. I actually can imagine how painful it was for you to revisit those horrors in order to create this video, and for whatever its worth, you have my most heartfelt gratitude that you did. You may not be a doctor, but you've saved lives with this story.
This video is three years old upon my finding it today. A drink of water and a second to catch my breath, because I've already seen that there's a part two.
Bless you Amy.
Thank you.
Thank you for your video. After watching your video, I suggested BAM to my Gastroenterologist and she prescribed me cholestyramine. My life has improved 100% overnight! Cheers from USA!!!!!!!
AMAZING NEWS!!! Oh my goodness, this has made me so happy 🥳 I'm so so so pleased for you!
I've been on cholestyramine for 30 years now.
It is a complete game changer.
Mr Eric, how long did it take to notice cholestrum was working and helping your system???
@@lynn69jackson 👋 Hi Lynn, how long did it take for your body to start reacting positively to cholestrum??? Thanks.
@@lynn69jackson Lynn, ever have a HIDA scan or gallbladder issues?
I was just recently diagnosed with BAM and am now on a sequestrant after 10 years of suffering. I almost cried during this video because you described my life and my experiences perfectly. One major difference is that I'm in the US. I have paid thousands and thousands of dollars year after year. I was not only sick, broke, but also suicidal. I had nothing to live for or to live on.
I was diagnosted with BAM here in Spain 2 weeks ago also, after 5 or 6 years. I thought that no one could understand what I suffered, until I saw this video. Although the powder treatment have an horrible taste, it has changed my life.
How did they test and conclude?
@@anuppandeyAustin I dont know in english, I think the test is called sehcat, is a kind of scanner..
@@paulamunoz6080 Please tell me what kind of bile acid sequestrant do you use ??
@@udaykhanna1 sequestrand?
Had my diagnosis last week of severe bile acid malabsorption. Been misdiagnosed with IBS since I was a child so over 20 years ago. I was always told to "go on a diet", "lose some weight" "use laxatives" It is very frustrating! Thank you for posting and making people aware!
what is the name of the test plz
How you got diagnosed?
Please
@Kat_Dear I hope she is not dead😒
I have also fat malabsorption..somthing float on water ..what I do
I have had stomach issues ever since my gall bladder was removed 30+ years ago. I totally understand the need to always know where bathrooms are and having to carry a change of clothes wherever I went. Just recently I discovered bile salt ( also known as ox bile) I take 1 tablet twice a day before meals. Almost over I noticed a huge difference in my bowels. I can now eat without having pain after only a couple bites or even feeling nausea and the pain and cramping is pretty much non existent. I am now 65 years old and really looking forward to having a very active life in my senior years. Best wishes to everyone that is going through this. Take care and God bless ❤
Where do I find this salt?🎉
I've had my gallbladder removed 7 yrs ago. I was okay until a couple of weeks ago. I'm having gas, bloating, pressure in my chest and constipation. The doctor prescribed Famotidine 20 mg but is not helping me. Besides I don't want to take this medication for long term. Can you please tell me the name of the bile salt pills.
@@CynthiaEdmond I take less than 1/8th teas of baking soda and 1 cup water. takes 20 mins to work
@@CynthiaEdmondLook up Dr Berg & gallbladder! He has a gall salt formula that I’m using! And he also recommends a different bile salt if his doesn’t work. There are very different kinds of bile salts depending on how your body reacts (& amount of acid in your stomach)
Thank you Amy for sharing your story. Everyone who suffers from an illness and must go through NHS doctors is facing the same dismissively attitude. They just want to push you out of the doors as quickly as possible and you feel abandoned with your continued symptoms that are misdiagnosed. You are left alone with stress and fears 😨 about your health, self medicating and very often feeling like you felt with these misdiagnosis.
My diagnosis came 8 months ago, after decades of IBS, the last two years have been a constant nightmare. My BAM may have resulted from taking the maximum dose of Metformin for almost two decades for Type 2 Diabetes. It didn't matter how close a bathroom was, I wouldn't make it. The diarrhea happened without any warning. Cholestyramine twice a day along with Imodium every morning is most helpful. In the past six months I've only had two horrific flare ups. What a relief from losing four days a week every week. I will be taking it for the rest of my life. Thank you so much for this video, it really helps to not feel so alone.
I am a doctor , and despite being not working in the UK , I have to say : I am sorry .. we are sorry
Don’t look at the common illness all the time . Also look out side the box especially when medication recommended is not working for the diagnosis. Please
Thank you for watching and wanting to learn about patients' experiences. I hope this video helps with your practice 😊
I have self-diagnosed bile acid malabsorption. I've been trying to get treatment for these symptoms for nearly 10 years. Mine didn't begin at such a young age as this videographer's did, but my experience is identical. I am reaching out to you for any dietary advice, if you're willing and able. TIA!
@@deborasolum5324 A low-fat diet helps to reduce the symptoms of bile acid diarrhoea. Medicines that bind to bile acids in your gut (bowel) are usually very effective. Examples of bile acid binder medicines are colestyramine, colestipol or colesevelam. Colestyramine is the medicine most often used and is usually very effective., foods that soak up the acid helps , avocados.
fatty fish, such as salmon and sardines.
nuts, including cashews and almonds.
@@deborasolum5324 does it happens after a meal, is the stool color is yellow, do u have Crohn's?
I fixed mine i can help.
You are not alone. This is the rule and not the exception and it is shocking and gaslighting narcissistic abuse... How it is not illegal is beyond me... the dismissiveness in the medical field. Absolutely despicable crockery. I'm glad you pressed on and thank you for making this video.
Ever since the 2020 shut downs all medical offices have these signs up that say they will not tolerate any verbal abuse. That is because they have to abide by protocols that don't help people. The medical system so broken that it is mind blowing how dangerous it is.
Sending hugs for you ❤I have been having IBS since 12 but recently gotten sooo much worse, my dietitian asked me to check for bile acid malabsorption booked private gastro since NHS keeps saying “it’s ONLY IBS” I know how frustrating it is how people dismiss you, and as you say people don’t believe how painful is. I hope you feel better now
First day of Cholysterimine (?) First day of real relief in 4 years.
Thank you for this video. I was diagnosed with Celiac and IBS and have been scoped in every orifice. I brought this up to my doctor after watching your video and he okayed the prescription. You are a wonderful woman and I hope you are doing well. I went out for dinner with my family tonight and didn't feel pain. I don't know if it's a placebo or not but it's a pretty startling difference in just a day.
I loved reading this! Sorry I didn't see it at the time. How are you feeling now?
I've just posted an update video if you're interested :)
ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
Hi Amy , just came across your channel. We are literally the same. I was told in my early teens I had ibs and was due to stress. I am now 30 and diagnosed back in 2020 during covid. I work for nhs and took me to work along other nurses to realise me going to the toilet 10x plus a day wasn’t normal ibs. You have to listen to yourself and others and basically stick up for yourself. We got this 💪🏻
This has been my life for years! I was just diagnosed with BAM yesterday! ( I’m 65)I had never heard of it but the biggest clue to my situation was my gall bladder had been removed. That should have been a red flag but instead I was told I had IBS due to stress! Thank you for your candidness!
Same here! Diarrhea for 25 years "IBS" and gallbladder removed 10 years ago. JUST now diagnosed with BAM! Hope you are well!
@@amy_is_an_owl_OvO_ What's interesting for me is that I've had my gallbladder removed, I was prescribed cholestyramine, it worked, and my doctor still called it IBS rather than BAM. So they knew the exact diagnosis, but still call it IBS
@@TennisGvy it's so frustrating the way different doctors "label" what you're going through. Thanks for the reply 😊
I hope you got the treatment you needed! How are you feeling now?
I've just posted an update video if you're interested :)
ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
I found bile salts and tudca a while back...just diagnosing myself, doctors are no help at all! They should all be ashamed! They just want us sick so they can bill us and the insurance company for more and more tests.
You just told the story of the life I’m going through for 7 months now and I’m in tears listening to you 😭😭😭😭
I'm so sorry you're going through this, I hope it is at least some tiny bit of comfort to know that someone else knows exactly what you're going through ❤ how are you at the moment?
@@amypeachyt Thanks for the reply. I’m still battling. I’m trying an alkaline diet for now... seems to be helping a bit, I don’t know how it will be like to go back to eating “normal” food
Me too I don't know what's wrong with this Doctors
10 plus years on my end... thank u for talking so openly & bravely about this topic
I have EDS, another hard to diagnose syndrome. I was 44 before I was diagnosed. I feel your pain. I feel your loneliness and frustration. It's ok to cry. Those of us who understand weep with you.
❤🦓
What's EDS?
@@InGreed666 erectile dysfunction syndrome - it's a horrible condition.
@@InGreed666 Form of genetic connective tissue disease.
Thank you Amy, for sharing your story, there are so many people like myself who've been diagnosed with 'IBS' an umbrella term for many gut/bowel problems, where as it's actually something else! Well done and all the best.
Hi! I just posted an update video if you'd like to see how things are going ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
Hi Amy - this is exactly my experience of the NHS. I'm a nurse and have worked in the nhs for 23 years and have a great passion for it, but......I too was told I had IBS, and for over 25 years. I was finally diagnosed with bile salt malabsorption 4 years ago, after a burst gall bladder resulted in emergency surgery, during which I suffered a full respiratory arrest on the operating table. I always knew it wasn't IBS but wasn't listened to either.... Still have issues but at least I know what it is now. I empathise with your emotions, I really do.
Hi jojo, I work as a health care assistant ina hospital but am currently off work due to recently being diagnosed with severe bile acid malabsorption. I'm absolutely exhausted. And am still waiting for the tablets colesevelam to properly kick in. I'm wondering how you managed to work?. When I was working, I was running to the loo while being exhausted in work. I would have my 13hour shifts and not eat anything because my symptoms were so bad. I'm worried about returning to work and having that heavy work load. I'm wondering if you have any advice for me? Much appreciated xx
I’ve had my “IBS” and “GERDs” symptoms for 18 years. I don’t have flare ups that often but when I do I honestly just want to die sometimes. Thank you for this video. I am going to look into this.
I'm so sorry you have been through that for so long. I hope my video has given you some information you can use moving forward ❤
I have even asked about this to my doctors and as you were - dismissed and doubted. I am very proud of you for doing this video.. Lots of love to you for your future to be happier.
I feel for you when some medical professionals do not treat women/ female patients seriously. Some think we are just overreacting, or some GPs suggested it was all in my “head”. But what I can say as an Asian woman, we are very tough- and would not go to doctors unless we’re dying (as we dont have NHS in the PH). I work for the NHS and after several “oscopies”, tests, hospitalisations and embarrasing flare ups- I finally got a consultation with a Gastro. He was very empathetic and listened to all my pains, I was very throrough with my explanation- and told him that I am not having a quality life due to constant stomach pain/ and diarrhoea (even with imodium). He acted fast, arranged an appointment with a dietician within the hour to help me sort a diet plan (helped a little- but still having daily pains and diarrhoea) and recommended for me to have the test in 6weeks.
I just had a SehCAT scan earlier, and hopefully it helps them diagnose what the real problem is.
You are right, IBS is not “Just IBS”- it’s a horrifying situation I would not want to wish on anyone. Bravo for your courage to persevere and help yourself. Sending love and prayers from Guildford!
Did you figure it out?
Amy, OH MY GOD. Thank you so much for this video - Its so weird it is literately my story but with you telling it. My name is also Amy and my issues started when i was 15 and i have only just been advised by a specialist at 27 that i may have bile acid malabsoprtion i am being reffered for a SCAT scan - misdiagnosed all my life with ibs obviously and taking imodium nearly everyday to deal with the diarrhea! Having to take countless times off work with people not understanding why, cancelling plans, freaking out and being scared sh*tless to travel for long periods of time, stressing out my parents -
I am crying while watching this. I really hope that i can get treatment now and get better.
I hope you've got the answers you needed! How are you doing now?
I've just posted an update video if you're interested :)
ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
You are so amazing and so strong for telling us all this horrible tragedy ! Seriously I feel like many doctors should start taking patients seriously instead of hiding behind their desks and not caring at all 😣 Amy you are such a strong woman it’s amazing to see how you’ve dealt with this ! 💕
Dear Amy, I have had your symptoms since I was a little girl. Most doctors and specialists eventually/mostly came up with anxiety and of course I was subscribed a range of meds. I then just in the last mont, visited a Physical Nutritionist who is venturing on IBS , dairy allergy, gluten. I eliminated everything and am eating relatively little. Still toileting up to 10 times a day. My daughter stumbled on BAM last night. This morning I watched your talk. This is me. Darling Amy, I now am going to have the SeChat test to see if that is it. I know it is. I am 71. I will let people know my results. Thank you
Caroline in Australia
Hi Caroline, thank you so much for your comment. I am so sorry you have suffered for so long. Did you manage to have the scan? Sending lots of love from the UK! ❤
God bless you ma'am. Love from India. I have been suffering the same health issue since childhood.
This is exactly what I have been dealing with for the last 20 years with the last 5 years of it being in so sick that I now stay in bed all of the time. I feel that I would be better off dead, I'm so tired of being so sick with this (IBS) that I truly have though of just ending it all, and thank God I found this video. Can you tell me how you are doing and if you are any better? And by the way I'm 67 and not able to even go to the grocery store or any of my other doctors or dentist appointments. I know I'm so depressed dealing with this I don't see any reason to keep going on . There seems like none of these doctors know what to do with me and I now am at the point I don't see anyone, I just stay in bed all day and use to work at a hospital as a patient specialist almost 18 years. I truly hope you are doing better and thank you for your sharing so I can find some hope in finding your post.Thank you again.
Hi Caroline, I hope things are going well for you. Just wanted to let you know that I've posted an update video :) Things are going well! ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
Probiotics, Enzymes, ACV in water.
Thank you for sharing, I am only a year in but my experience of the NHS is in line with yours...and the waiting between appointments whilst your life falls apart is unbearable. The only thingbthat means they take me seriously was an episode of pancreatitis and substantial weight loss, the rest they make you feel like its in your head. Nobody has mentioned BAM so thank you, a new line of enquiry for me. I hope your health continues to improve x
Thank you so much for making this video. I was first diagnosed with IBS 15 years ago. It was incredibly severe. I ended up bedridden. I had the same dismissive treatment from doctors. I was once told to go to A&E by my GP. The doctor at the hospital examined me but my body was so tender by then I screamed in pain and he stormed out leaving the door to the corridor wide open as I layed half naked on the couch. I was in tears and was begging for someone to help me. The nurses wouldn't even help me ring for a taxi. My weight had dropped to 7 stone and I was in my mid 30's. This was my lowest point. I suffered for years but gradually got better (it probably wasn't quite normal but it was near enough normal considering what I had been through). I also had fybroids for years so sometimes it was difficult to know what was causing what. Now it has started again and is getting increasingly worse week by week and I dread what will happen to me. Will I lose my job? Will I end up bedridden? And it is not being taken seriously again. But after much research I now know about BAM which is how I ended up watching your video. My experience sounds like a carbon copy of yours. I have now been ill for 6 months and have been told I have to wait another 3 months just to see a consultant but they are going to redo the sample and blood tests "again". GRRRRRR!!!!! It is also so frustrating when they tell me I should be happy because they haven't found anything wrong with me and they don't understand that that just means left to suffer. So I am going to demand to see a Private Consultant and demand to be tested for BAM. Your video has been a tremendous help, seriously. Thanks again. xxx
Hi, I know you commented a while ago but I just wanted to thank you for commenting and also to ask how things are going? ❤
?
My heart goes out to you. I cried with you watching this. I only discovered bile acid malabsorption three days ago after my worst fear almost came true while working with a client. I’m 58 years old, have tried every diet you can think of, and have been wondering how much longer I could go on like this. I gave up on doctors many years ago (in my mid 20’s). Back then although I had symptoms, diarrhoea was sporadic and not such a huge issue as it has been for the past 25 years or so. Your story is so much my story though regarding the anxiety and the emotional part of this. I’m now eating a carnivore diet (what I thought was my final option) and that is what brought this to a head and has allowed me to find this answer. I’m about to try managing this with natural remedies so wish me luck. Thank you for being so honest and vulnerable. It’s incredibly hard to do. I really hope you continue to improve and get over this. The hardest part to get over is the anxiety and fear of a flare up happening but I hope with time that can happen.
My journey is very similar to yours. Going zero fiber has helped.
It could have been me writing that. Carnivore as of July 25th out of desperation. In midstream of testing.
What natural remedies have you heard of, please?
On my 4th time watching lol. Would you mind putting IBS in the title so people looking for answers will come across this video. This NEEDS to have the awareness spread. I had a 3%absorption rate when it should be 15
So what does that mean?
@@InGreed666 I have bile acid malabsorption not the blanket term ibs
I totally get how you felt, I was told I was crazy and its in my head.
I'm so sorry you went through that, but so thankful you made this video. It took me 26 years to get diagnosed with endo/ado. While the diagnosis was different, the doctor- hopping, the dismissal, the being diagnosed as IBS and the IBS being downplayed and not understanding anything, and the fear and confusion, all of it. My experience was different, but I relate so much to yours.
This sounds exactly like what Im dealing with. Thank you so much for your video!
First of all, I want to say that you are so brave for putting your story out there. I was recently diagnosed with Bile Acid Malabsorption last June after being in hospital for 3 weeks with chronic pain and a lot of other symptoms. I had been misdiagnosed for seven years. I was 18 when I got a proper diagnosis but for those seven years, from the age of 11, I was out through consultant after consultant. I was told countless times that I was making it up for attention, that it wasn’t that bad etc. I felt like no one believed me and that I was going crazy. I felt so alone and helpless. Until one amazing consultant in June believed me, cared about helping me and diagnosed me with BAM. But I look back on all of it and wonder how I got through it. I missed out on my teenage years, I lost all friendships and became isolated because the illness was so debilitating. Thank you for sharing your story. It doesn’t make me feel so alone. I agree that word needs to be spread about BAM and the stigma of getting diagnosed around it. I will pray that you continue to get better. Xxx
How are you managing the BAM now? Any meds or supplements, diet changes, etc?
Im a holistic Nutritionist and this video is really helpful for my practice
Diagnosis yesterday after 15 years. I'm crying with you. Its just awful. I'm hoping questran will change my life.
Thanks for your story. X
Amazing! I know it's odd to congratulate someone for having a diagnosis but I know how relieving it is to finally KNOW. How are you getting on with the Questran?
I'm not liking it. So I'm trying psyllium husk and it's working just as well. Its a natural product which does the same job. No nasty side affects. You should join the BAM Facebook page. There are 3 on there. Its just so nice to share stories with others. X
Thank you for you video! 15 years of pain and misdiagnosis! Ruined my career, marriage, and mind! Thinking about removing gallblader. Had extreme malnutrition, multiple hospital visits. Docs have NO idea!
I have been looking for someone like me, thank you!
Thank you, @AmyPeach for telling your heartbreaking story. I feel for you, having had the same treatment form doctor and specialists. Happy your story had a happy ending, at long last.
I love how brave you are telling your story.
Love from Philippines
You have just saved my life!!!! I too have been missing diagnosed for years. I finally know what tests to ask for at my gi appointment Monday. I was almost ready to give up on life. The quality of my life was very bad. Thank you!!!!
This hit so close to home!! I got my gallbladder taken out when i was 18, im 24 now, and ever since then i have had the worst pain, the worst stomach aches, having to go to the toilet so often in the worst possible times that I felt so sad and isolated, honestly never talk to anyone about it other than my family who turned it into a running joke. Finally, five years later after having gone to many, many doctors I finally received an answer without being dismissed or being told everything was 'fine.' I literally got diagnosed last week, and honestly for the first time in a really long time I felt like I wasn't going crazy or that my body just hated me, there was a reason for everything happening. Sadly, in Ecuador where I live, medication isnt available to treat this right now which is gutting honestly, but at least I know now that there is something to help and I have a diagnosis which puts my mind at ease a little. It's conditions like these where you cant really talk to anyone about that make it so hard to live normal life and it ends up being the thing you think about the most instead of enjoying life. Im glad you finally got an answer and youre working through it!! my best wishes and congrats on your pregnancy :)
In the ibs group forum they say you can use calcium carbonate for BAM. I will try it out myself soon. Maybe it‘s something you can look into. A lot of brands have it, so maybe you can buy it in your country :)
I'm researching ox bile and tudca. I feel your pain.
@@allnfun6315 from my understanding it can make it worse 😢
See if you can get ox bile or other bile salts, that may help you alot...along with diet
@@allnfun6315that should help alot
Amy i just want to say one thing: thank u, this video is very, very helpful, ithas been helpful for me and i'm sure it's the same for a lot a lot of other people❤❤
You have just summed up my life so accurately between the ages of 18 to 28 that it's spooky! All the frustration with GPs and never being taken seriously. Avoiding social situations and panic over long journeys. Having to wave goodbye to a career that I loved. I share the same emotions and feel that much time was wasted in what should've been the best years of my life! (Sounds dramatic, but if you know, you know!) I'm honestly so grateful to the gastroenterologist at Royal Berks Hospital that FINALLY took my seriously, after 10 years of battling with GPs, and sent me for a SeHCAT test. Literally the next day on binders was the best day I'd had in a decade! Like you I'm still managing the condition and finding my way but hopeful for the future. Thanks so much for sharing your experience!
I'm so glad to hear your experience finally ended with some good, but sorry you had to suffer for so long. Better days ahead ❤
Tim Edwards, may I ask which binders you took back then and do you still take them now? Also UA-cam isn’t showing me replies to my comments so if you “like” it, then I’ll know you replied! I would really appreciate the name of the binder, I’m in hell with this and have a spinal cord injury and am paralyzed from the waist down on top of it and can’t get to the toilet fast enough.
Tim Edwards What binders did you use?
I have a similar story after having pancreatitis and my gall bladder removed. Pancreatitis again two years later and eating has never been the same. This was 22 years ago and I am waiting to see a gastroenterologist now! I have been diagnosed with bile reflux with stomach erosion. Similar systems that made travelling difficult and many unexpected flare ups. Lots of tears when at the doctor. I hope I get answers like you did.thank you for sharing your story. You ar not alone in your struggles!
This is literally my story... wow! It's uncanny how much my story matches yours... I had a recent check in with an IBD nurse who asked me if I told my GI I had my GallBladder removed, I did, the very first appointment I had and he dismissed it... she thought this was strange and booked me straight for the test! I'm currently waiting on a SeCHAT scan, I'm praying that something comes of it because I'm fed up with this pain! Much like yourself!
Thank you for sharing your story!
Hi! Have you had your scan? I hope you're doing better now x
Your courage to be so frank and so eloquent made me want to listen to you. Lovely lady, you will help so many people. X
A very inspirational and well put together video.
I have experienced the same. It took me 45 years to get diagnosed. Lots of “ it’s just IBS” .
It all comes down to cost I’m afraid.
But the suffering is so wrong.
Unfortunately Doctors don’t even know what this is when you return from your consultant.
So they are still messing my situation up.
One doc told me I don’t need them.
I am researching as am worse then ever and I believe it’s because you can’t take Questran then just stop them . I’m glad they have helped you. Never be ashamed of getting upset.
It's been 20 years for me.
No GB anymore now.
Thinking of trying Psyllium Husk.
Have you tried that instead of questran?
I'm so happy for you that you found a great Dr that helped you.
I appreciate your vulnerability and sincerity in this video! It took 12 years for me to practically diagnose myself with BAM and ask for BAS after being told by a GI it was definitely not the cause of my symptoms. Many doctors(Gastros) have been so insensitive and don't seem to understand that the gap between appointments(6 months or so) is daily pain for those with IBS, so there being no hope of improvement and diagnosis coming out of appointments can be so debilitating. My symptoms included the almost constant pain, but the worst and most controlling part was the false urgency. Soon after eating, I would feel a surge through me and run to the bathroom but would not be able to go. I would have to live around the toilet until I was finally able to go(sometimes over an hour), and it was almost always diarrhea when it finally happened. Some GIs tried to tell me this was constipation, but it really never felt like that. I've spent weeks of my life on the toilet with urgency, unable to go. It got to the point where I developed an eating disorder, although no Dr. I've had seemed to think it noteworthy. I would not eat until I got home from school, no breakfast or lunch for a decade. I would go to basketball practice after not having eaten all day. I had, and continue to have, such a terribly fickle relationship with food, which should naturally be a positive one. I also lost my appetite and hunger almost entirely about 2 years before I started BAS, and I was told to "just eat," and that I couldn't be given appetite enhancers unless I had HIV or cancer; meanwhile, I was going 2 days without eating and would only do so out of necessity. I also had to resolve that on my own(found correlated vitamin D and B12 deficiencies and asked for tests), and I'm somewhat there, but not all the way.
It makes me angry and sad having lost all those years of my life that could have been spent exploring and developing my personality. Sometimes I wonder if who I am is actually who I would have been without all of this, whether I'd be more outgoing or sociable. I missed so many opportunities, including a couple trips to Europe, just out of fear of eating something and not being near a bathroom. And even if I was near a bathroom, would I have urgency and not be able to go. I was in constant fear and hyperaware of my gut and how it felt. You really don't get much compassion either. I've been bullied by teachers for excused absences and talked down to by doctors; one tried to convince me that I was so sick in the morning because my anticipation of feeling sick induced it, basically a modern chicken vs. the egg argument. All it would have taken was more humility on my Drs.' parts to acknowledge that they are not aware of every illness(although it was discovered decades and decades ago) or more effort by my parents early on to search for any possible, treatable cause like I eventually did, or, most importantly, perhaps, a country that does not treat its citizens and their illnesses as commodities from which to profit.
I truly believe that, at least in the USA, more effort isn't put into diagnosing and considering underlying causes to IBS because of how much money IBS patients bring in with wasted tests(multiples of the same every time you switch doctors) and constant visits(20%+ of gastro visits if I'm not mistaken), not to mention trips to the ER, which are incredibly pricy here. It is a virtually "safe" group of symptoms and illnesses for most doctors to refuse to sincerely try to treat because they are not life-threatening. Multiple studies are showing the prevalence of BAM in IBS to be at least 1/3 of those with IBS-D and around 1% of the Earth's population. It needs to be addressed clinically and in school. So many things you said in this video were word-for-word what I have been telling people for years about the hole-ridden umbrella term that is IBS. Thank you again for putting this out there!
bless you to bring this to light this, doctors upset at me for expressing what i wss going though loudly in the office and told to talk softly and the living with this uneasy married to the bathroom. these doctors are still giving me the run around. bless you
Going through this now. The many dismissive doctors over the years have had me give up more times than I can count but its only getting worse. Some episodes land me in the hospital and STILL no one can figure it out. Hope you are doing better. I'm glad you got answers finally ❤
How are you doing now? Were you able to get on meds for Bile acid diarrhea?
Hey emy I just finished watching you and I only can tell you to keep fighting for your life never give up always get the information of what is what and don't panic learn why your digestive system is working that, for só many years doctors been telling me that I have IBS. Keep being brave.
Was diagnosed with BAM after 30 years (yes, I mean it, 30 years) of symptoms.
Have now been prescribed Colesevelam so hopefully my endless suffering will be reduced or ended.
Hey, how you doing now and whats the dosage and duration?
Hello did it help?
Does colesevalam work for u?
I APPRECIATE YOU. THIS WAS A BIG UNDERTAKING FOR YOU TO DO. I AM ANXIOUS TO HEAR YOUR NEXT UPDATE. I WAS FINALLY DIAGNOSED WITH SLUDGE IN MY GALLBLADDER. NOW I HAVE THE CHOICE OF WAITING FOR ANOTHER FLARE TO DECIDE IF I SHOULD HAVE MY GALLBLADDER REMOVED. I AM 73. I HAVE BEEN THROUGH HELL WITH AN IBS DIAGNOSIS FOR YEARS AND A PILL TO CALM MY PAIN, NOT. I AM HAPPY FOR YOU TO BE BETTER BUT I KNOW YOU HAVE A ROAD TO TRAVEL.
Thank you for your video. I am from Toronto Canada and have suffered for 12 years of not teavelling, missing celebrations etc until I had Agoraphobia and letting it affect my mental and emotional state. I finally found a doctor who would spent 2 minutes actually listening to my story and he has perscribed a binder for BAM. I hear your emotion amd frustration and although I am sorry you went through all that I am comforted to know I am not alone. Thank you again and Many Blessings
I too was diagnosed with IBS. I immediately understood this to be a copout. IBS is just a bunch of symptoms with no other definitive diagnosis. I too had multiple tests over several years and tried excluding several foods in an attempt to control symptoms. Ultimately I did my own research and found relief from things I learned from others experiences online. Thank goodness we now have the ability to do this ourselves. I am incredibly happy you were able to find a Doctor who was able to help you. Cheers to good health and happiness!
Thank you Amy so much for sharing your story. It's through hearing from people like yourself who have suffered with a misdiagnosis that I've been able to suggest to doctors what is wrong with me. I'm mid way through a SehCAT scan right now, which I'm hoping with lead to treatment. Thank you for sharing your feelings so candidly, I've often felt the same. I can't imagine how hard it much have been for you as a teenager, I'm so sorry you had to wait all those years to receive proper care and diagnosis. All the best and thank you again xx
Thank you so much for sharing your health story , so sorry for all your pain and suffering, this is a huge encouragement.
What a beautiful video and your story is identical to mine. 17 yrs of wrongly diagnosed with IBS, many doctors with not really caring, pervasive surgies, diets, loved to travel but stopped long ago, couldn't eat a public places bc of my flare ups, brought me so much anxiety and panic attacks. Im trying Questran for my 1st time today. I hope and pray this will change my life and i can go back to my real self. 🙏
Peace to All, did the Questran help you?
Any update to your condition?
@Mary Hawker HI, so it actually did help for like the first 3 months and then went back to normal IBS. But I realized the only time I dont have any IBS, 0% is during Ramadan when I'm fasting. I swear, the feeling I have during this month with my mind, especially my stomach issues are gone. However, it comes back after.
I have been suffering with IBS for many years and I either have diarrhea or I'm extremely constipated. Like you, I have stomach aches daily and am truly fed up. I so appreciate your video and am sorry for all the years of extreme suffering. I wish you the best.
I’m listening while having a flare up and crying.
Sending love and healing vibes ❤ I know how it feels. It sucks. Just know it will come to an end and you should do whatever you need to do to feel better. I hope this flare is a short one xxx
Thank you so much for this video! I have a similar story! mine started when I was 13 as well. They diagnosed me with IBS for 10 lovely years, I went to soooooooooooo many doctors before someone took me seriously. Finally I got diagnosed with ulcerative colitis. It's because we're young women, they think we're faking it/have low pain tolerance. I'm so glad you've been diagnosed!
Wonderful video. I am 85 years old and my have the same thing. At least when I go the doctor in a few days I kind of know what to talk to him about.😮
My heart goes out to you Amy! Mine took 6 years of the diarrhea from HELL to find out it was BAM. What a nightmare! It is still hard to regulate and I have bad days, and yes, you feel so awful when it happens that it does feel like you are dying! I would not wish this on my worst enemy!!! Hang in there Amy!!! You are not alone.
Thank you for sharing your experience. It’s scary how similar your journey is to mine. How are you doing now? A few years later.
I started having issues in my early teens and I’ve done all the stuff you have been through. I can relate so much when you mentioned that you would gladly do any test they offered as it maybe was a solution of all this, but in the end it just caused disappointment.
My life has been so hard missing out on getting friends, the job I wanted and so much more.
I for some reason came up reading about BAM and then found this video. I think it’s a mystery no doctor have ever mentioned this for me. I feel sad that I have to be my own doctor. I will bring this up for discussion and see what they say. I’ll never give up trying to get better. I’ll keep you updated!
/ Andy
Any update on your diagnosis?
@@maryhawker5003 I’m diagnosed with ibs and chronic diarrhea but I got some bile acid medication prescribed (Colestid) after discussing this with my doctor. It has really helped with my symptoms!
I rarely have these panic diarrhea moments that I had so often before the medication. I have some side effects though from time to time with nausea and bloating but it’s like night and day for me with the medicine.
It feels like I can live life better and not being so restricted anymore.
@@relaxmore444 that’s amazing!!!
This sounds familiar.
At the age of 9 I was wrongly diagnosed with IBS.
At 22 I was correctly diagnosed with bile acid malabsorption and I have been on bile binders ever since( now 52).
I only have a problem if I forget my bile binder .
The difference between IBS diarrhoea and bile acid diarrhoea is it feels like pooping lava.
Lynn Jackson, May I ask which bile acid binder you take that helps you?
Just watching your video (3 yrs after you posted it) after recently being diagnosed, after 30 years of going from doctor to doctor. I’m now waiting for my pharmacy to restock so I can begin the medication. Thank you! Thank you!! for making this video & sharing. I commend you for being able to politely share what you went through. I do not think I could have been so calm, because I know all too well what a “flare up” involves and how embarrassing & overwhelming it can be when an accident happens. This illness just sucks the joy and life right out of a person. Last week I told my daughter that I didn’t want to die, but honestly, I just don’t think I can continue to live like this anymore.
~ Your video gives me hope that with the right diagnosis and medication, I will have some normalcy! Thanks again for sharing! I truly believe open dialogue about health issues that we struggle with and all the difficulties (as well as things that bring us hope) help us heal. Praying the medication will be a game changer!
I hope you are feeling better!
I've had to come back here after my second sehcat scan... I too have the bile acid malabsorption. Ever since I was young I never believed it and found out about it and found your channel through research. Amazing how I'd seen 4 doctors over a few years about it all told me IBS. I was having something else investigated and asked for the sehcat which has given me a diagnosis. Thank god! 🎉🎉
From my own personal experience, there’s a lot of misdiagnosing going on in the medical field these days. Not all doctors are bad, but there are some they are. Careful out there.
It's very important to talk about it, thank you so much for sharing this! You're very brave. I hope you're better now
I love you for making this video. I've had stomach problems 'IBS' since I was a child. Buscopan does absolutely nothing for me either. I take Nexium every morning & night. Doctors are soooooo dismissive regarding stomach/intestinal problems. My friend had Crohns & it took years for them to diagnose her at which point alot of damage had been done. This was in the early 2000's.
You poor thing having to go through that. 😘
I hope you've managed to get some relief from your symptoms x
I've just posted an update video if you're interested :)
ua-cam.com/video/C_F_DU1Jj5g/v-deo.html
i’m crying after watching this video, i relate so heavily to everything you’ve said and feeling dismissed by every single doctor i’ve seen just becasue i was a young girl with IBS. started stomach complaints at 11 years old, 22 now and i’m so tired of dealing with this pain that’s only getting worse at this point. i’m 99% certain i have BAM as well and i feel motivated to go again and ask for specific testing for this disease, so tired of feeling like crap and having no medication help me
i also never wanted to tell people i had IBS either cause everyone seems to think it’s not that serious. the pain i have is so unbearable sometimes that i can’t get out of bed and telling people i have IBS just made me seem like an attention seeker…
I've had bowel issues since I was about 13, I'm now 30. My brother has Crohns, and my Dad recently got diagnosed with Stage 4 bowel cancer. For the last year, I've been to gastrointestinal places for tests, many many tests. I finally got sent for a Sehcat scan a week or two ago, and they've just diagnosed me with Bile Acid Malabsorption. I feel your pain throughout all of this video. It's tough, however given that my Brother has Crohns, I would have expected them to fast track everything to find out what my issue was. :(
I'm reading up on ox bile/tudca. Heard of food grade diatomaceous earth?
I have it too but how do you fix it
Thankyou for being so brave and telling your awful story. It will help others xx
Hi Amy, your story really resonates with me.. I know the hell that you’ve been going through only too well. I was diagnosed with IBS 26 years ago! For years I’ve been trying to get the GP to understand that there was more to it than “just Ibs”.. I sadly lost my daughter when she was just 15yrs old & my severe flare ups were put down to child loss!
I finally got referred to a gastroenterologist as my abdomen pains have been horrendous & my life has become very unsociable due to my life revolving around the toilet. I am unable to go out alone & Motorways are a definite no no. I have a toilet first aid kit in the car for long journeys! I also have a blue key which is very useful should I be stuck somewhere in a queue.
I’ve had many tests, all are fine! Medication (buscopan was useless) includes mebeverine, codeine, loperamide & more. I’ve received a letter from Stafford hospital stating that the consultant is more or less certain that I have BAM & he’s ordered a seHCAT scan to confirm it.. I know it’s not ibs, I’m on sleep medication & get woken in the night with urgency! The burning is like acid, the pain is unbearable most days. Anyway, I’m so glad that you finally got an answer & are on a slow road to healing somewhat. I really hope I do too! Take care & thanks for sharing your story. Anita X
I can relate to this so much. 😢 I have had “IBS attacks” with pain so bad, that I’ve felt like dying wouldn’t be the worst option. Having fibromyalgia, joint hyper mobility syndrome, anxiety and depression, I feel I am dismissed by my doctors every time I see them. “Oh it’ll be your anxiety.” “It might just be your pain tolerance.” “It’s JUST a functional thing.” It’s so disheartening and incredibly hard not to lose hope. I try not to go to the doctors now, as I’ve lost confidence in them, and in my own experience of what is going on with my body.
I’m so sorry you’ve had such an awful time with pain and I’m so glad things are looking a lot better for you. I hope it continues. 🤞🏻 x
Hi - I can totally relate as I also have fibro, EDS/hypermobility and deal with anxiety + depression (as a result of all the pain). I know how difficult it is when you aren't being listened to but you deserve to be helped! I would really urge you to try a new doctor and maybe even ask about Bile Acid Malabsorption. Even if you don't end up having it, I think it's worth discussing. Do you have anything that helps you during bad flare ups?
Amy Peach I have oramorph for when the pain is so bad I can’t leave the bathroom and I take antispasmodics everyday, but when a flare up happens it’s still a case of waiting for it to pass. Thank you so much for the helpful video. I will definitely try to build up a bit of courage and see another doctor ❤️
@@missdb211 Imodium Plus works well for me when flare ups are starting, it helps stop them from going on for so long. Good luck with the doctor, happy to chat further if you need an ear! X
Amy Peach thank you so much 🙏🏻 x
Dominique Lydon I agree! It’s awful 😢
Found your video after being misdiagnosed for 18 years. Happy but also sad all that time has been lost.
You are an amazing warrior! Thank you so much for sharing your inspiring story. People like us need to get the word out about this sort of treatment!
Thank you! After 9 years of gut journey someone just mentioned BAM to me. Finally not feeling crazy. Thanks for sharing!
I’m a nurse in the US and I have absolutely no use for 99% of doctors. Nine years ago I awoke with mind numbing pain in my shoulder blade that radiated down my arm. Saw many doctors, chiropractors, therapists, ect. to no avail. After an MRI it was decided that the source of my pain was coming from my cervical spine. I ended up having a fusion of 3 vertebrae with no relief, a spinal cord stimulator with no relief, and so many injections it’s a wonder I didn’t spring a leak. Lost the ability to work, lost my friends, and my life, suffering unrelenting pain, unable to perform even the simplest of tasks without severe pain. Not long ago, I saw a new doctor for something unrelated and just happen to tell him about my severe arm pain. He walks around the table I was sitting on, asks me to lean forward and presses on my back asking ‘is this where it hurts’. I exclaimed yes! That’s where all the pain is coming from! Turns out, all this time I have had a rib that is out of place!! I was elated that finally!!! someone was actually listening to what I was describing and knew what the problem was but pissed off at the needless suffering, surgeries, and loss of nine years of my life due to incompetent healthcare. I now understand why it’s called ‘practicing’ medicine.
agreed.
this is why I've studied medicine by myself for over 20 years.
wish you all the best, you helped more than 1 person with this video
I literally thought of making a video like this. Im always stilll healing but i was in anorexic conditions not sleeping or able to digest a thing and pumped with antibiotics for no reason! 2 years fully bed ridden. Treated so poorly by NHS nurses in hospital too ;( it makes me so angry that i was left alone to figure this out. Increasing stomach acid and probiotics saved my life! Not a single GP mentioned any of these.
Bless you for sharing your journey….it took drs 36 years to figure out I had Celiac Disease. Was told I had IBS over & over, had two surgeries for acid reflux (and I still have reflux) I’m now 72 and most of my adult life was hell because of the amount of time I spent in the bathroom (and I didn’t always make it there in time)….many times I thought my insides were going to be pulled out of my body while I was on the toilet the pain was so severe. I’m going to look to see if you have more videos after this one with better news. I was crying with you. Praying you have continued to get better since this video. 🙏🏻🙏🏻🙏🏻🙏🏻
Thank you for being so brave and sharing your experience!
Wow, I'm sorry you had to go through all that! I hope medical providers reading this think of you when treating their patients.
That’s modern medicine for you. Doctors think that because the have degree in medicine that they know everything and always gaslight their patients. I’m happy that you were finally able to get the right diagnosis after all these years.
I just wanted to comment and validate this. This is SO TRUE!! Same thing happened to me!! I was in so much pain. I had to take a leave of absence from work and school!!! I had to move back in with my mom!! This needs to be discussed and it causes morning sickness too!!! I am sensitive to oxalates, malabsorption, sluggish bile and liver problems!! I went to a specialist and they could not find what was wrong! For me taking prebiotics, apple cidar vinegar, digestive enzymes, lemons, l-glutamine, ps5 b6, hcl, milk thistle and ox bile is my routine for minimizing my symptoms. I’m traumatized by my pain. I have a phobia because of this illness!! I also have mthfr. Avoid high oxalated foods and eat things like sardines to help flush out oxalates. Heal the gut! Thanks for sharing this.
I was misdiagnosed for 17 years and it’s awful thank you for your video , knowing that I’m not alone , 💖
Ms Rachael what meds do you take? Did you remove gallbladder?
Thank you so much for sharing your story despite the pain and difficulty in doing so... You have been so brave, and I know You've already helped far more people than you can imagine. ❤
Questran changed my life and my families life. I also went through hell for years with dismissive doctors and tests. Doctors took my healthy gallbladder out and after I started Questran for bile diarrhea. I think it was bile diarrhea all along. My mom and sister also had same issues and take Questran powder. Doctors over dx IBS. We had this for years with no answers. I had awful diarrhea in college and young adult years. I knew every bathroom and hated traveling. Questran gave me (and my family) a life back. I wish I would have never allowed them to remove my gallbladder.
Ask your doctor to put you on Colesevalam instead of Questran... it is more convenient and palatable in tablet form.
@@BuyOneGetOneFree I received Welcol but would not take it because it has aspartame
@@cupcakepaper6523 Ah, I see.... that is a shame... tablets are so much easier than mixing up those gritty sachet powder with orange juice! I am glad you found Questran worked for you. I have had multiple surgeries for Crohn's disease from age 27 and sympathise with your symptoms - people don't really understand when you tell them you need the toilet 50 times a day! ..... I was lucky I had fantastic Gastroenterolgists and Surgeons and Colesevelem has helped a lot.
I understood your emotions. So far I think I have IBS but luckily I don’t get severe cramps. Waiting on scan to see if it is bowel infection. I hope like you I finally find out cause of my depression,sore legs, lethargy. You are so brave and charitable talking about it openly. I wish you great health in future. Thanks❤
Medical gaslighting is becoming very common these days. For me the most insulting thing was not the doctors telling me that I have psychiatric problem and not gut problem, for me the most painful thing was my own parents saying that I am making all this up because I am a lazy bum and don't want to work and move up in my life. Eventually I was diagnosed with pancreatic insufficiency which also caused chronic intestinal inflammation. If a doctor is unable to understand your case it's very easy for them to say that it's all in your head and you need psychiatric evaluation.
Hi did u mean u have pancreatitis or enlargement in pancreas , am having bad anxiety these days
One of my scan report tell me my pancreas not doing well
@@HarpreetKaur-ti2xp I had had acute pancreatitis 18 years back. May be that has caused pancreatic insufficiency. You should get your pancreatitis treated ASAP. Also avoid oily-fatty food. Anxiety will not solve any problem
You’re very brave to share your story. Unfortunately I am pretty sure it’s a common scenario. I think you’re being very fair about your experience of the medical profession. They are SO behind… clueless when it comes to the gut. “IBS”… what about finding an underlying cause. It’s an agonising & protracted, lonely journey:-( The pain alone you suffered is appalling. You will be helping others!
$100 a month in the USA for the little packets and I was misdiagnosed for 32 years. The USA is even worse. I've been through hell, still no good solution for me.
Still no good solution why, did you try the packets? $100 is peanuts for the improved quality of life.
@@chickenmuffin Not for people who don't have those kind of 'peanuts'. $100 is a lot of money to a lot of people.
I'm so sorry you've been through this for so long. I hope you have found some ways to help you manage ❤
@@amypeachyt Cholestyramine has been absolutely life changing. I'm also now working with a Naturopath to try and uncover the root of the problem since I feel the medication, while amazing, is really just a bandaid solution.
@@amypeachyt Hard disagree. $100 is absolutely peanuts for 99% of first world people if you're honest about it. Your quality of life is at stake! Sell your iphone, give up netflix, work 3 hours a week at min wage. Don't enable this kind of victim mindset. If $100 a MONTH is not a "good solution" then there is no good solution.
Soo relatable for me. Thank you for this video!!! Also consider doing a parasite cleanse.