My Doctor Didn't Believe Me (I Wound Up Hospitalized) | Let's Talk IBD
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- Опубліковано 16 січ 2023
- It is devastating to a patient when their doctor doesn't believe them. A patient needs to trust in their physician, but sometimes this need is not met. In this video, I share my experience with an intestinal obstruction being made out to be an eating disorder by my doctor, and how I'd handle this now.
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I have 3 rules for dealing with this: Always remember that the person who answers the phone most likely has nothing to do with whatever the issue is, be direct and clear without being overly upset, and you can tell people who will listen, so if one person isn't listening, someone else in the practice might. And, any professional you bring in (doctor, therapist etc.) to treat you, or your child works for YOU, not the other way around. You have every right to a second opinion or to walk away if they can't give you the care you need and deserve
Pinning this because this is AWESOME advice!! Thank you for sharing this!!
@@LetsTalkIBD My first pinned comment ever, thanks!
Facts. Thank you 🙏🏾 I recently remembered that I need to be my own biggest advocate. Loading my new doctor now…. 😂
I (male) truly believe that females are treated very differently than males when it comes to health issues. I have always been prioritized for treatment at triage and have never been told that it is all in my head. My wife is amazed at how the staff seem to want to help me out versus females that are told to sit down and told “we’ll get to you soon”. I find this double standard appalling. I hope that this will change very soon. We are all equal. 😮❤
But why ? Whats the reason if ur in pain ur in pain…
@@anastaciagufler3875 my hubby said even though sick and in pain sometimes I looked okay then rushed for emergency treatment twice.xx
@@elliegoldie6140 Yes and then?
@@anastaciagufler3875 I think it’s not so easily fixed as there’s a system behind it we aren’t aware of. I found this when doing research for one of my books. Men are more easily believed than women because they are being believed based on what they say and how they are saying it. A woman is believed easier if she’s being found attractive and if someone finds you attractive they automatically consider you more healthy. So it’s a double edged sword as when you don’t look your best as a woman you’re less believable, but if you do you’re also less believable when it comes to being sick. Women believe men more easily than women, so that also doesn’t help when it comes to female doctors treating women and then lastly men bond over things they have in common, while women bond over emotional connections, which you usually don’t get to form as easily with a doctor, especially when they’re new. It’s complex and ingrained into our systems, so it is something they consciously have to work on, otherwise it’s automatic.
@@Sue-pn7mq yeah But still I thought society helps more woman than men cause they think men dont need help
you are telling my exact story even though I just hit my 20s. no doctor would believe me even though I was chubby I couldn't eat and when I did it was hell. so I ended up locked in a hospital for people with anorexia. at first being yelled at.
than I ate "normally", the day after that I got so sick I threw up nonstop still being forced to eat. to the point I was throwing up fecal matter. they left me pretty much dying for 4 days till I got send to a hospital. instant emergency surgery where my heart even stopped beating and yea luckily I made it trough.
but it is and stays one of the more traumatizing experiences this disease caused.
I think Doctors need to know when they fail at helping people. You should send this video to this Doctor. This could help that Doctor in the future, if they're still in practice.
13:20 This right here, make them accountable and get it in writing somewhere. When I finish up with a doctor, I always have them phrase what they are actually saying with something like "So what you are saying is, bleeding out my ear is totally normal, nothing needs to be done, even if it continues, nothing will be done?" And they usually back track and get a little more specific with treatment. (made up example for dramatic effect)
I love this, and thank you for the tip. May God Bless you and Maggie.🙏🏾🙂
Maggie, I am a registered nurse. Critical care for 25 years. Oh how I wish I could have been your mother. Or, at least a Medical friend. Oh, how I would’ve enjoyed advocating for you in the most assertive, friendly, yet very grounded, way! I cannot fathom the grief you experienced at the hand of this so-called professional. God bless and keep you and make his face shine upon you, and be your strength! As I am confident that he already is! I am here for you anytime, you need anything!
Love,
Karen
I went to Mayo and they wrote in my chart “suspected eating disorder.” I was furious! While pretending to listen to me the doctor was secretly thinking I had an eating disorder. I have since written her a letter to let her know how wrong she was and to do better.
I had something similar happen to me. I was having leg pain and shortness of breath. The doctor said that since I have asthma and allergies that was the reason for the breathing problems. (It was a bad allergy year.). They said that I probably twisted my ankle and just didn’t realize it since it wasn’t painful at the time. I asked for an ultrasound of my leg and or a chest X-ray and was given blood work instead. I went to another doctor the next day and was immediately hospitalized with Deep Vein Thrombosis in my leg with clots from my ankle to hip and Bilateral Pulmonary Embolism with clots in all four lobes of my lungs. The blood work that was performed by the first doctor was not very detailed as I had critically low iron levels and needed two transfusions! I emailed the first doctor, not to threaten malpractice (which I am sure she was afraid that I might do), but to educate her for the next patient like me. She apologized, checked up on me at a later date and eventually thanked me for reminding her that not all hoof beats are horses, sometimes it’s a zebra..,
A good thing happened by me telling the doctor her error and having a conversation with her about it…one of the close friends that we were staying with when I was misdiagnosed and who knows my whole sordid tale went to the same clinic for symptoms that were similar but much less severe than mine. They immediately ran an ultrasound and found out that he also had a DVT. He was put on blood thinners (as I was by the doctor that correctly diagnosed me), he was sent to his primary care doctor and he then texted me to thank me for possibly saving his life by being the squeaky wheel. The world is much better with our friend in it so if it helped at all, I am happy that I followed up.
@@KymPossible83 This doctor is clearly awful. The minute you said leg pain and shortness of breath I thought “need to rule out blood clots.” I’m not a doc, but this is like pulmonology 101
@@Paulgray172 exactly!! The sad thing is that at least three doctors tried to convince me that “I must have twisted my ankle and just didn’t realize that I had injured it” and when I started getting shortness of breath it must be due to my asthma and a very bad year for allergies. I ended up with a blood clot from my right ankle (where it originally hurt) to my hip and all four lobes of my lungs. Life long blood thinners as they don’t know for sure what caused it. I now know to listen to my intuition and raise hell if others don’t. Not all hoof beats are horses. In my case it was a frickin’ zebra unicorn!🦓🦄
Mayo told me that my tachy was from laziness...when actually I have POTs and it was literally causing chronic fatigue. They also told me I needed to see a therapist and once I saw the therapist it had been reported that I had ED and was bulimic and I was making myself throw up. Actually I had severe gastroparesis.
I had a very similar doctor not believing me situation when I was first diagnosed. I have Crohn's disease too and the first doctor I went to thought I was attention seeking and had anorexia. It was awful. It took me so long to go back to a doctor after that and my crohn's got so much worse because of it.
So sorry you had to go through this. As a child it's even more damaging.
Unfortunately, I have experienced the same thing for over 10 years. Pain, constipation, eventually nausea, and feeling suicidal. I knew i had a blockage, no-one believed me. All in my head. In 2020, a doctor performed a colonoscopy and went right by the blockage. It's even in his notes. Months later, I passed a huge piece of calcified mesh. I finally had a sigmoidoscopy, and it was found more of that mesh perferating my colon. Need surgery as mesh is also adhered to my spine. I'm waiting for a colonostomy, have been since last year now. No idea when it'll happen. Still have the mesh piercing my colon. Wasn't all in my head.
Thank you for being so open and vulnerable. You are inspirational!
3:15 Hearing you say that the doctor disbelieving you and labeling your illness psychological was worse than anything else about your disease was so validating. Thank you. Being gaslighted when you're desperate for help by the very people whose job it is to help you is terrifying and psychologically damaging. It's like being in a horror movie where the kindly stranger turns out to be a villain. In my case, the dismissiveness and disbelief has continued even after objective test results, and I keep finding new evidence of bias in my medical record.
Turns out I have an uncommon heart condition that can dramatically worsen just from dehydration and requires treatment that's literally the opposite of what doctors are trained to do for symptoms like mine.
I honestly believe that doctors' unwillingness to endure the temporary discomfort of confronting their own and colleague's bias so they can see the facts of my case objectively might kill me someday.
It is so so hard and traumatizing! I have been a professional patient for so many years now that this has happened a lot to me. I'm currently not even getting my abscess and fistula cared for because I don't feel like I can trust ANY doctor in that area after what I went through about a year ago. That's something that you are going to hear sometimes radically different approaches across surgeons with too, so to have one scold you for using google is extra frustrating! It's one thing if there is a standard approach and not much deviation, but it's pretty much a given that there's no perfectly defined way to care for abscesses, fissures etc....and if you watch a doctor seminar on the topic, they flat out say it's gruesome no matter what you do.
Maggie, I too have had your experience. I have MG (Myasthenia Gravis), and for 20+ years I was called every possible name: I was lying, faking for attention, a malingerer, etc. When my eyes developed ptosis, finally I was sent to the neurologist and diagnosed. My heart goes out to you. I don't think that doctors are "special"; they are full of flaws and faults like everyone, and some of them just can't cope with the profession that they spent so much time and money to get into, and so they blame the patient when they don't know what is wrong or what to do. My heart goes out to you and I hope for all the best for you. You are so right; the right Dr is vital.
Thank you for this. I am currently dealing with this. The excuse I keep getting is "it's your weight, lose weight" or "You're a woman, you're lying or over exaggerating." and I am at my wits end. Being an ex nurse myself, I always treat them with patience and kindness. I am just so tired of being talked down to by doctors and then them making no effort to actually help...
@@MuhammadAhmad-gm2uq While I appreciate the intent, this is unwarranted and an utter false-hood. I do genuinely hope this is out of actual concern and not just pushing religion in to everything since you have posted this under practically every post on this video. Have a wonderful day.
I blocked because he went onto everyone's comment and spam-commented this 🙃 Apologies for this! This is the fun of youtube!
In the late 1990’s, a former classmate of mine - Craig, was having severe intestinal problems and was referred to a gastroenterologist. That gastroenterologist told Craig that his “pain” was all in his head. Craig eventually found a gastroenterologist who diagnosed his Crohn’s Disease. Now, Craig has been on remicade for at least the last 10 years.
The weird thing is that I also saw the same gastroenterologist that Craig saw in the late 1990’s who told Craig that the pain was in his head and that was the gastroenterologist who diagnosed my Crohn’s Disease.
After having three major surgeries in the abdomen for abscesses, diverticulitis, and fistulas, including emergency surgery for peritonitis, I have notes on hand to take with me. I keep them simple- a chronological and factual account of what I have been through. I keep this as well as a copy of recent CT scans in a folder and take it with me to appointments.
Oh Maggie, thank you for this. If this validates a young person or bolsters someone new to medical bureaucracy, it's valable beyond measure. I still have to remind myself that I can make decisions, say no and walk away.I needed to hear this today
I’ve learned to ask if they can explain why they think it isn’t … and how they excluded it. This has given me a lot more answers.
Thank you for sharing Maggie! I have been so sick for almost a year now. Ive seen 3 gastroenterologists, one was last Wednesday who suggested i maybe get a psychiatric evaluation. My calprotectin is 6000 and i had a capsule endoscopy that shows ulcerations in my terminal ileum. This specific gastroenterologist said he doesn't like the capsule endoscopy and refuses to even look at the report and pictures. The other 2 say i have IBS. They are so blinded by IBS they do not consider that this could be Crohn's Disease. I am honestly blessed to have a surgeon who has believed me since day 1 and has supported me through it all. Having a repeat colonoscopy on Monday to take biopsies of the ileum. But the gastroenterologists are a joke! They are so insulting, disrespectful and completely brush me off as a crazy IBS patient who refuses to accept she has IBS. Honestly i have PTSD form all of this and my heart goes out to everyone who has had to experience this. ❤
My daughter went to ER 10 times and they gave her an anxiety pill each time and sent her home. She ended up self diagnosing her thyroid cancer.
This was so helpful. I have had so much experience with being blown off by doctors. My favorite is “oh, you just need more fiber”. I have severe IBS-C. Half my colon was removed because it twisted and died (and I almost died as well). I am adamant about teaching my daughters to not tolerate being ignored. If they truly feel they are not being helped and feel frustrated and hopeless ( or insulted which is the worst ), they should not go back to that doctor and should find someone else. Both of my daughters have also been treated this way . Another thing I would do when they were young adults is go with them to an appointment if they were concerned about not being taken seriously. Sometimes just the presence of another person to back you up can be helpful especially for young adults.
My mom has Chrons so when I started having GI issues as a teenager, I was lucky to be able to go to the amazing doctor she had been seeing since I was 2. I ended up being diagnosed with IBS after ruling out I didn't also have Chrons.
I hope she sees this video. I think all of us who have chronic illnesses have been in this position before and that’s a sad thing. I’m so glad you’re sharing your story and getting this out in the open. I feel like women are disbelieved disproportionately more than men. I also have IBD so we stand together!
This video was so valuable for everyone, whether one is a Chron’s patient or otherwise. Thank you for making it.
I cannot imagine being in that situation as a child. Even as an adult, I twice stayed too long in a bad medical situation. In one case a second opinion from another physician made the original doctor, more attentive to my treatment. In the second instance, my primary care physician insisted I was "fine'. I went to a specialist who agreed with me in that I was "not fine". So I switched to another primary care physician in the same practice. It is hard to not take this personally, but you must think of physicians as if they were any other service providers. What always makes it hard is the physical aspect of medical care. I think that makes the whole relationship seem personal instead of professional. Whether it is your vehicle, your home or your body, get the treatment and the care that you deserve.
Maggie I think you should find where the original doctor is and send her your health record and make him/ her feel bad! Maybe they might learn something. I fully understand your feelings as I had a similar experience with a different disease xx❤
I was diagnosed with Crohn’s over 37 years ago (undiagnosed 5 years before that because of exactly what you described!)…so many doctors not doing their job along the way! Thankfully I have a wonderful gastroenterologist now who is a perfect fit. I’m so lucky to have his genuine support. Thank you again for an honest video that really hits home and makes me realize I’m not alone.
Thank you for sharing. I was diagnosed with ulcerative Colitis in 2019 and had an ostomy. I was losing weight. That was when I was 60. I will turn 64 next month. I've learned more about ostomy care from your channel than hospitals, doctors and nurses.
I had the exact same experience with a Dr. he told my my mother the exact same thing, and she believed him, he told her that I was suffering from anorexia, and of course I was not, I had Crohns disease, i suffered for years not knowing what was wrong with me, and ended up weighing 65 lbs. and almost past away. Great advice this has effected me as well and i am now 59 yrs old.
It's horrible when you bare your soul and are not believed. I am so sorry that you went through this. I'm glad you now beyond those dark times. Life is a journey. Sending love.
If i could like this topic a million times i would. So very important.
Another issue is not believing level of pain.
Thank you for sharing your experience, I just experienced the same thing. My surgeon also doesn’t want to do any surgery. He did recommend I seek a second opinion.
It’s so tough to be in pain and bleeding so much that I needed three blood transfusions in less than two weeks. I do appreciate you taking the time to reassure us. It helps to know I’m not alone in this.
Such sage advice from you, as always!!!
I am so very sorry you had that horrible experience. Why don't doctors trust their patients? That is awful. Thank you so much for sharing this with us. This video had a real impact on me.
That is great advice. Thank you for sharing your perspective as a patient and a health care provider also. This was perfect. Thank you so much!!
Maggie, thank you so much for bringing attention to the issues we deal with. You are educating us and others and also providing a safe place for those of us coping alone.
Hello, I have to say it is very informative and insightful. Thank you for sharing this story with us.
I just want to know what kind of right some doctors have not to believe a patient? They are there to believe and provide a good care!
This is wonderful advice about trying to navigate the medical system. You're a very wise young woman! God bless you!
I'm glad you did this one and most people can relate to what happened to you.
I have had some serious experiences myself. It's difficult to navigate to get things resolved.
I've found the nurses are my best resource in those cases or other doctors after finding one didn't take that next step.
You look like you are feeling better.
Take care
Thanks for all your wonderful videos Maggie. You help so many people..😊❤
Thats great advice maggie about asking the doctor to put it in your charts when you have a problem 💖
Thanks for sharing and that Doctor clearly didn’t have the knowledge that they needed to help you. Sadly our IBD is still a specialist condition and normal doctors don’t understand or have the knowledge to help us! You’ve been through so much and I have lots of respect for you .. I have UC and often I find even now I’m educating doctors about my condition! Let’s hope there will be more awareness and education in the future ❤
Your tips are very helpful and true!! I understand that health providers have a difficult time balancing patients out as some are frantic and too emotional. Also we know our body the best so when something is off they should listen to us more… but nevertheless we should always stay calm and collected is the best way … for some time my symptoms got weird and they often said yes is because of the inflammation but my husband get persisting and we found another specialist who gave me the necessary test (pet scan) and oh yes the second test showed a nodule in my small intestine … so if something is off we need to push further but with keeping in mind what
Maggie says!
Thank you for this ❤️ I have some hard times, pain etc. I wish you are well, happy and i hope for the bottom of my soul that you have exiting, joyful life. 😊❤️
I've learned to move on when my gi said he can't help me with my pain. After my surgery because I had perforation. My surgeon was amazing, never went back to the one that didn't understand my pain. I can be more forward with my new GI because I know my body and symptoms.
Boy can I relate and I’m 70. They think I’m nuts, I think I’m sick. But had weird symptoms that are hard to describe. Stomach, hernia, terrible cough, bloating. Have appointment Tuesday. Think it’s time to insist on tests. So keep you posted thanks for the support means allot!
I've found it helpful to do my own research and send brief excerpts from medical journals or respected medical sites (e.g. Cleveland Clinic, Mayo Clinic--not WedMD) and to document my symptoms via email. Clinicians are processing a LOT at once during a visit, and it would be hard for anyone to take perfectly accurate visit notes or retain unfamiliar information in that setting. Putting things in writing gives them some quiet to actually absorb it, and creates a CYA (cover your a**) incentive for them to be thorough to avoid liability in case of bad outcomes.
You are very special. Your papa must be very proud of his girl. ❤️🐞
Ugh I had one of those! Drs that just say go home and gain a pound or two. YOU CANT EAT WHEN IT GETS BAD. The thought of food just chokes you. I was 5 mos pregnant and weighed 84 lbs from the crohns being out of control. My internal med Dr had to go over my gi and on gun and put me in hosp and feed me thru a picc line.
I’m so sorry you had a horrible Doctor that did not care or understand. What a nightmare for anyone especially a young girl. Now you are a wonderful advocate for others. Maggie you have a powerful, honest,gifted, caring channel! Thank you ❤
Gosh you’re so sweet ,I’m was just over 40 when I got my first stoma hated it ,,cried so much have 6 kids ,so very hard ,My lovely husband got me through it .I got an Illost ,much better still have problems , 🇮🇪🇮🇪🇮🇪
I can't stress enough how much we need to learn to "trust out gut" and advocate for ourselves. Easier said than done, I know. It's exhausting and often seems impossible. But it is so important, as highlighted here.
I am so sorry that you were treated that way first of all! Secondly, thank you for sharing your experience! There are so many of us out there that have been told by a doctor that our condition is "in our head" or purely anxiety related. I was sick for months and could barely eat, I went to numerous doctors, and to the ER four times. My GI specialist assumed because I had IBS and anxiety that my symptoms were all in my head, and he prescribed me an antidepressant. Fast forward a month later, and I still have the same symptoms. I finally had my husband call the GI doctor, and magically, they decided they might do a HIDA scan. The results: my gallbladder was functioning at 11%. I found an amazing surgeon that booked my surgery 3 days later. When she took my gallbladder out she told my husband that the bile inside was black. I am a firm believer in following your gut and being your own advocate! Since I've had this experience I am now very frank with doctors, and like you say I have learned to move on if they aren't listening to me!
I was diagnosed young as well and hospitalized for my first flare. I had no idea what I had. They sent a psychologist to speak to me but I had no,idea that this is an autoimmune disease and I would have for the rest of my life. My second flare was really long because they didn't realize I have both UC and Crohns. I never talked to my friends about it because I felt embarrassed. I have had doctors treat me like it was all in my head. After I was put on anti nausea medication ( Phenergan), my life improved. I have had so many infusions and surgeries. I have switched doctors to feel understood. I have a regular doctor, gi doctor, infectious disease doctor, proctologist and surgeon. You do have to have a team. This disease is difficult physically and mentally. It irritates me when I feel horrible and I'm told " you look fine". I've had friends ask me why did I lose so much weight as if I were dieting. Maggie, you give really good advice to newbies or for those who want to learn.
Very awful to hear that the doctor didn't believe your illness, Miss Maggie, and don't feel down on it.
My brother is always telling me oh so what if the doctor isn't nice. As long as he's good at what he does who cares. I was like oh you are so wrong about there dear brother! To me if a doctor is rude or seems bored with my case or doesn't believe me I will leave and never go back. I did have a funny thing happen the last time a doctor was being extremely rude, condescending. I suddenly stood up and started cussing him out and I continued to do so all the way out the door and it was a bit of a walk lol. I am still shocked at myself that I did that but he had it coming. As I was driving away, I saw him standing in a window watching me back out and still flying the bird and look on his face was priceless! I have never done that before but I will if it ever happens again. Doctors need to be nice, and listen to and believe their patients.
I love your sweater!!
Been there, done that! It is a tertrible feeling not to be believed by a healthcare provider.
I'm going through the same situ right now ,I've been back and forth to the doctor different doctors a very long time .I'm right at the surgery stage now ,I see my colorectal department tomorrow to see what's next .
I have had a primary care doctor and a gastroenterologist who have been very good listening to me. On one subject both of them have thought I was off base. I have Crohn's Disease. Although I have suffered from severe fatigue for years, I could not get either of them to test my Iron, Vitamin B12, and Vitamin D levels. They saw no reason I would be deficient. Last week I bugged my primary care doctor again about my fatigued and demanded to be tested. He decided to go along with it. My Iron was normal, so I have stopped taking iron . B12 was only 99, while D was only 22.24. This was despite taking a Vitamin B Complex and 2000 IU of D3 daily. I have started monthly Vitamin B12 injections and 50,000 IU of Vitamin D2 weekly. I feel vindicated!
God bless u sweetie
When my primary care care doctor treated me like an idiot I did move on, but my HMO has their own staff and they talk to each other or else there is something on my chart about my strong personality. I'm not pushy. I just ask lots of questions and want answers. However, I get listened to in urgent care. But the doctors in the G.P. discipline brush me off with no attention at all. Consequently, I don't go to a regular G.P. when I feel rotten. I go to urgent care where they actually look for why I am having a problem. After the urgent care docs have some idea of what my issue is then I can go to the G.P. with a prepared idea of what's going on and ask for help. Then they actually start practicing medicine and stop trying to make me go away. They are so rushed they have to make snap decisions and they often just won't think about solutions on the first or second visit.
I have irritable bowel which is what doctors call anything they don't know what to do with. I have had three episodes of intestinal bleeding, not a little but quite a lot. I was hospitalized for it once and totally sedated for three days for pain. But with an irritable bowel diagnosis if I get in trouble, like no bowel movements for a week or more I get told to take Mirilax. I take it daily anyhow just because nothing happens without it. I get told to eat more fiber. I'm diabetic and I eat tons of veggies and fiber. It's mostly what I eat. I can eat a big cauliflower for dinner sometimes with no effect. I can eat a whole pan of greens and beans. No effect. I can be vomiting and they just give me Zofran and send me home. But in urgent care they at least look to see what might be going on. Sometimes I need extra help and the doctor will check to see if I have a blockage. That's happened. I was just packed up in the descending colon. Now I know I need something to stimulate my bowel not stool softeners which just cause leakage but no movement and the agony goes on longer. Believe it or not old fashioned Milk of Magnesia does the trick but I selcom use it on doctor's advice (G. P.) I discovered this myself. Years of advise to eat prunes, or more roughage resulting in 17 hours of vomiting and nausea has made me avoid G.P.s. Even when my stomach is hard and distended and painful none of the G.P.s will order scans or help in any way.
That's why my mother had chrones for 30 years with pain, bleeding and diarrhea and wasn't diagnosed until she was in her 50s. Nobody referred her to a gastroenterologist in all that time.
I hear you, I was diagnosed with Ulcerative Colitis at 17, but I had symptoms since I was 10. My parents were poor so I was so sick by the time I got diagnosed and I became allergic to the medicine that wasn't really helping. I never saw another GI doctor for 30 years. I had huge pain that made me pass out. No insurance would cover my intestines so I had zero options. They even lost the xrays!!! My gallbladder went bad I lost 40 lbs in 3 months while on high doses of prednisone. I found a great doctor he got me in remission and he has been mine.
I feel for you. I know when you are a child, people just think you are c/o to get attention. I am glad you are with Zak. He loves you so much!😉
My insurance company tried to accuse me of the same thing when I was off work recovering from surgery with malnutrition.Can you imagine? Fortunately the ER doc believed me and got me squared away right away.
I’m still fighting to get a diagnosis despite being in pain, loose stools everyday, acid reflux despite eating very little, mouth ulcers all around mouth etc. I have family history too and just want some help to deal with it. I’m buying like tiny clothing sizes from like a extra large to small / medium- it’s crazy.
I too was accused of having anorexia before being diagnosed with crohns...I was years in pain, anemia which was always blamed on menstruation, very ill and always told I had irritable bowel syndrome...After my 3rd obstruction I demanded and was determined to get a diagnosis, because I knew there was something wrong...My Dr was very disapproval but I didn't care...She gave me a hard time until I finally got so anemic I demanded to see a Heamatologist and thats where I was finally referred to the correct Gastroenterologist who finally diagnosed me with Crohns and ended up having 4 strictures in my small bowel and had to have a resection and 20 inches of bowel removed...I know first hand how being disrespected and not believed feels like...I always felt that if I was a male patient I would have been treated differently...It took me 25 years of symptoms to be diagnosed...I always was a bit over weight and didn't ever look really sick which didn't help...My blood work was the tell all in my opinion plus the pain 2 hours after eating always indicated to me that the problem was my small bowel not large...So,everytime I had a colonoscope nothing showed up, so always told I had irritable bowel...I'm doing ok now but I'm just thankful I didn't end up with an ileostomy...I've really have had no problems since my surgery 3 years ago and not even taking biologics...I would not wish what I went through on anyone...The pain I had was excruciating at times and yes I would go days without eating due to pain, plus worked full time and raised my son...I have a very supportive husband thank goodness...You really have to be your own advocate and next time I ever have any problems like this I would seek out a medical advocate to speak on my behalf...I'm sorry for what you've been through and you as well were disrespected by a woman Dr...That makes me kind of sad too...I wish you all the Best.
I was diagnosed with colonic inertia at 13, but it took a while and several doctors to actually get a diagnosis, I had one tell my mom that the pain was all in my head and my mom needed to be hospitalized because of the stress of believing me. Needless to say we never saw her again. Thankfully we found a pediatric gastroenterologist who ordered a Sitz Marker Study and that’s what diagnosed me, and then we found an amazing surgeon who specialized in colonic inertia!
I love your viedoes! Is there a way to talk to you about my problems with my surgery for colon diversion and the problems eating. And hating what I’m going through with bags. Thanks!
I was referred to a support service at university because the academic staff thought I had anorexia. I didn’t. I was broke, living on college food and also quite ill with something else. I was actually then diagnosed with dyslexia. I shit you not.
Thirty or so years later I’ve been on a waiting list for over a year for ADHD and autism. Both have which were also massively affecting student age me and which may now have cost me my job.
I’m really grateful for dr Google. Wouldn’t be here without it.
My GI doctor is so thorough he tells me who would be best.
Even in my 20s, the same of my symptoms kept me from getting diagnosed. In my case I was told I had "Just IBS" (and people who have IBS can be miserable, so there is no "Just") and convinced me that it was normal in IBS to get stressed in one month and then get terrible diarrhea 6-8 weeks later.
My potassium would drop and on a hot day when I would be working outside and sweating my heart would start pounding and I would get terrible headaches. Again, I was told that was proof of stress and proof of IBS.
At 24-26, I would have whole meals shoot through me in 15 minutes with awful cramping and it would be just like vomit in the toilet. I was assured that (1) that is impossible and (2) if I could recognize the food, that meant I wasn't chewing it enough because I was stressed (3) if my gut was moving too fast this is more proof of IBS which is caused by stress.
Finally, I went though a period of bad upper-GI pain and bleeding. Guess what? I was told I had an ulcer which is proof that I am "just stressed out".
Not as bad, frankly, as a teenager being told she had anorexia but still pretty rotten.
I hate that you had a Dr not believe you. I have been fortunate that the Dr I see has never done that. If I have a issue we get to the cause. I am thankful for that. We have figured out some health issues and have everything under control
I have a rare bone conduction (meaning i am more likely to break). I fell and fractured my skull, they tried to send me home multiple times i refused without a x-ray at least. I ended up spending a week in hospital and have emergency surgery to remove a large bleed on my brain.
We know are bodies the best if you feel something is wrong push to get the treatment you need, tell them every small details even if your not sure there related.
The best thing I ever did was drive two hours to an IBD Center! My Dr is a world renowned expert in Crohn's, and listens. The center also has a psychologist and a dietician that see me during my appointments. It's a long way to go for care and procedures and surgeries, but so worth it! Good IBD specialists are out there! If you don't have one yet, keep looking!
When I lived in Poland doctor always kept telling me that I am just hypersensitive, everybody have pains and its nothing so special to complain about it so much, and recently from doctor in UK i heard "I have to very thoroughly ask you for your pains you have because you are hardcore and keep skipping saying about pain and keep living with it instead of saying about it" If I would from beginning be treated by helpful doctors many things might look different. I wish people wouldn't judge so quickly heroin addicts and on methadone because I believe that everybody if they would have huge pain and doctors would ignore it by years and then they would found substance which at least for a while let live life like normal person... Life without pain is privilege / something not guaranteed and I wish more people would understand others.
I think something that has helped me find closure is writing a letter to one of those problematic doctors. I laid out my health journey and how their actions made things much worse. Just put some of that pain into the letter and put it back in the hands of the person who caused it. Maybe that dr learned something from it, maybe nothing changed, either way I can left some of the pain there.
As someone who works in the healthcare field, thank you, this does work sometimes! We had a patient send a very well written letter to one of our doctors explaining how he didn’t listen to her, the unprofessional words he used, how she saw another doctor who diagnosed her correctly, and how he could have done that if he had actually listened to her. That letter really did make a difference in the way he treated his patients. He listened better and he stopped using the unprofessional language he had used with her.
Also I loved "pulling info out of your butt," ha ha. Super good advice to do research. I ended up with three fistula which kept getting diagnosed with UTI. After seeing weird material in my urine, I googled it and it said "rare." BUT the symptoms were exactly the same as what I had. I prefaced my theory to my PA with "I'm not trying to be Dr. Google, but..." and she took the time to look it up, agreed with me, and immediately sent me in for a CT scan. Always research!!
It took months of pain, doctor visits, er visits, and finally a ct scan (followed up with a colonoscopy) found my Crohn’s disease. They didn’t think it could be Crohn’s because I was overweight and that isn’t typical with the disease.
I understand this. I was treated so poorly. I had a colectomy and had horrible complications. The surgeon kept telling me I was fine. I came out of surgery still passing air through my urethra and now my vagina. Two years have passed, I am in worse shape than I was prior to surgery and have a HUGE hernia from three fistula tracts from an infection involving my my ascending colon, I was told it was a surgical infection. I am not small, but the treatment I received put me in a downward spiral and I gained MORE weight. As I am looking for help, there is NO way I have inflammatory bowel disease because I am overweight and constipated. This video really helped. I have since lost 40 pounds and I pray the surgeon I am seeing now listens to my symptoms and does not just see an overweight patient. It's horrible.
@@MrsTreshaM I’m so sorry you’re going through so much :( I truly hope your doctor listens to you. Keep your head up and keep fighting, you’re not alone!
I’ve been watching your videos and been trying to figure out who you remind me of. Now I realized you remind me of molly burke! Your voice and energy is just like her
She is so fabulous, what a compliment! Thank you!! ❤️❤️❤️
It always amazes me with GP/MD's/Specialists/surgeons etc- They learn something one day then the next day act like they have always know it. Yes my long term doctor retired too a year ago- trying to find a new one was shocking, not so much for me luckily, except wasting my time and money- because I know my condition well-but the crap that was said to me and the treatment offered which was totally inappropriate blew my mind . I'm thinking what about the poor patients who just do what ever they say which probably is the majority and in the last year yes one GP didn't believe what I was saying to him and started going on about "You only think these meds worked" and referencing some psycho-sematic dribble which stunned me. I said to him " I'm not going to get sick just because you don't have an understanding with what's going on. I was shitty with his dribble but as I hastily left, I did hear some gnashing of teeth- from him. At least I pissed him right off. Doctors are like car mechanics the good ones are there, you just have to find them.
Part of the problem in the UK is that the NHS is in crisis. Although you are allocated a GP in reality you see whoever is available at whichever practice has an appointment and that can take a couple of weeks. I don't know if this is the practice across the country but it is in Cornwall where I live. My stoma nurse is fantastic but my GP has to refer me to the hospital. I have lost 28 lbs in the last year because my diet has become so restricted and I can only eat small amounts of food at a time but my GP doesn't see this as a problem because I can still eat something. He did refer me eventually but let me know he didn't see the point. I have been waiting to have an appointment at the hospital for 13 months and they recently contacted me to see if I still wanted an appointment so I am still on the list but no appointment in sight.. I know because of past experience I have adhesions but I felt the doctor didn't like me suggesting I might know what the problem is. This has been my experience with various doctors, but not all of them since I was 16. I am now 67!!!
Yip had that Dr too. Had more than one. Xoxoxoxo
Doctors misdiagnosing me my WHOLE LIFE as:
Depression
anxiety
BPD
postpartum depression/anxiety
when it's quite simply ADHD, but no one would listen because I did well in school.
It's so frustrating when doctors don't trust that we know our bodies.
Maggie YOU Look GORGEOUS…..Having your Hair in that High ponytail and that white Sweater looks just so beautiful on YOU….
I just had to tell you that……That Handsome husband needs a picture like that to show everyone who His Bride looks like….
Always watching from VIRGINIA 🌹
As much as I love my nurse practitioner I struggle with her listening to me because it always seems like she’s in a hurry or attributes it to my anxiety. I have anxiety, depression and most likely PCOS and I am over weight these are all things I know but yet some of the issues I’ve been having have been happening long before my rapid weight gain and have just worsened through the years, her new diagnosis for everything is sleep apnea which does not fit my health issues at all and it’s just very frustrating to struggle to stay awake for longer than 4 hours at a time and constant deep painful aches in my legs/bones and headaches or migraines almost daily
It sucks when your doctor doesn't listen to you !I was told for over six months that my stomach and back pain was due to my large midline wound and jp scars, and it was nothing but scar tissue. WELL it turned out i had kidney failure and a blockage in my bile duct and it causes a fistula.After 6 mths the fistula healed and my kidneys are mow stable but i have CKD stage 3..Doctors really need to listen!
The American healthcare system is awful, we left and are now in another country to get my now adult child the medical care that is in dire need. We went to 16 gyns in 6 years, I have lost count of how many primary care and specialists. The last specialist a hematologist finally diagnosed kid with Ehlon Danlos syndrome.
I can totally relate it took me over 15 years to get a diagnosis and ended up with a colostomy then that failed and herniated and now have an Ileostomy and it now has herniated as well and still have lots of intestinal issues everything I eat and drink I get so bloated I feel absolutely miserable my back hurts my kidneys hurt I feel like I don’t wanna eat but know I have to cuz I don’t want to end up in the hospital so I keep suffering , wish they’d figure out what is all wrong they said I have very severe pelvic floor disfunction and very slow motility I had my large intestines removed but nothing is feeling better I still feel so miserable I went from 113lbs to up to 180 my weight is through the roof I don’t know what to do I’m scared to eat I don’t want the unwanted weight and pain 😢wish they can figure me out I go to specialist after specialist 😢and the last one that did my Ileostomy said I’m stuck with it forever that’s very devastating to hear cuz it’s all so emotional and physically a drain on ya , you think everyone’s lookin at ya so you double the clothes you don’t want to go in public , the leaks are so emotionally draining cuz it’s so embarrassing 😢I don’t know I just feel so down a lot I’m trying to stay positive with it all for my 6 kids and husband but it’s so hard everyone thinks your crazy if they only knew how we felt inside 😢😢
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Can anyone help me need some advice should I go for the humera injection or not as I'm in two minds I'm scared of the side effects
As a woman, all the times I haven't been believed or taken seriously have been male doctors. The other common denominators with those appointments is that my mother, a doctor, was not in the appointment with me. My best advice for anyone (especially women) with medical issues is to bring a support person, preferably someone who has some level of knowledge of medicine, such as a nurse, doctor, or lifelong patient. They will be able to tell when a doctor is pushing you off, disregarding your symptoms, or can even take notes and remember what the doctor said if the appointment is emotional for you.
Sad and infuriating. I think most people know their bodies, and when something is off.
I had the same thing happen to me. It's so upsetting when a doctor doesn't believe you or fight for your care when you are telling them something's wrong. They should be doing everything to find out whats wrong. Don't get me wrong, there are many people that have conditions to warrant them not to follow through i.e. like not being able to eat or feeling nauseous they could have actually turned anorexic or bulemia (spelling), there are also those that have another psych condition where they think everything is wrong with them and its just the attention of the doctors they want or the tests, surgeries, etc. I forget what that condition is called, but its legit that some people have it. But, thats where the doctor should have done the tests to make sure you don't have stomach, intestinal etc issues first before accusing of a psych issue because you have a serious condition that has been documented for many years that could cause issues you experienced. She should have been sued for malpractice imo because she totally dropped the ball in your care and it could have been life threatening. Getting sued would prevent her from ever doing that to another child/person for sure. Anyway, I was telling my surgeon, and all the other doctors, nurses, and nurse practitioners etc that would come in to my room several times a day for weeks while I was in the hospital about having pain in two areas of my abdomen following the surgeries I had. They ignored me, sent me home. Then weeks later, Im at my surgeon appointment and asking him why did you cancel the cat scan I was set to have since my antibiotics ended (they always did one to see if I had to do more meds or not due to former abscesses and drainage collections still present in abdomen after the surgery), he said he didnt feel it was necessary any more to keep doing them. Again I tell him (it has been a month now), I have pains in these 2 spots of my abdomen still and I kept thinking it was just me healing, or because of walking after surgery it might hurt there, etc, but I said...shouldnt it have gotten better at least somewhat by now? Not worse? He again ignored me, and responded to the cat scan inquiry --and said fine, if you it will make you feel better lets do the cat scan to put your mind at ease. I go to the cat scan, and when the result came in they called me on my cell phone while I was out , and his office staff said can you get to the emergency room tomorrow to meet with the surgeon so he can drain an abscess they found in your abdomen ( that was 1 of the spots I complained about hurting btw). I said sure, and we got off the phone. Then, she calls me back like 10 minutes later and said, "Actually, can you go there now? The doctor will meet you there. I said okay. I went, he numbed me up, cut me open, packed me with saline drenched gauze and put some dry gauze pad and tape over it and sent me home. 4 days later, I have the chills and shivering so bad I was in horrible pain from the shivering tensing my whole body up so bad, Fever, and the pain in spot #2 I mentioned, had gotten 10x worse I could barely walk. Back to the ER I went. They admitted me right away, my white cell count was over 19 thousand. I had sepsis and some other fun stuff. 8 days I spent in there. And let me tell you, he didnt believe me all those months and he didnt believe me after I got hospitalized again for 8 more days, plus he tried convincing one of the floor doctors for that day not to do anymore testing on me that it wasn't needed anymore. I was in tears that they just dropped the ball on taking care of me when I still was in pain and ignoring it. It was another doctor that came in later from infectious disease that stood up for me, and ordered more tests and got me taken care of. Now, Im not in that pain with either location due to radiology guided needles draining abscesses in location 1 and 2 and another month of antibiotics. NEVER EVER let them give up on taking care of you, its your body and if you know its not feeling as it should..then its their job to find out WHY, or explain why its not feeling right. But never assume nothing is wrong when its not getting better, only worse. Oh and btw, when I was discharged this time, no word from his office or him since the day before my discharge. And thats just b.s. because he was supposed to do my reversal on my ostomy after 3 months he originally said (which would have been middle to end of July, uh like now?). He even was telling me I had to start getting it pre-approved and his office would work with me on getting the rest taken care of. Ya, dont think he'll be back to finish after whats happened. He knows he screwed up Im sure. -.-
Since I'm overweight, I get a lot of eye rolling and "it must not be that bad since you're overweight".
I get this too. I am overweight but also have gastroparesis. No one believes me. It’s because I eat simple sugary carbs because they’re the easiest thing to digest.
I straight up fired my doctor
I wish there was a way to test doctors for being too complacent. I had SIBO for two YEARS because my ex-doctor kept telling me it was my anxiety. I am SO sick of lazy doctors blaming EVERYthing on anxiety.
I have intense lower back, s.i joints and hips pain. In 35, with an illeostomy and a liver transplant recipient.
I am on a full 3600mg Gabapentine in a day.....my doctor wont refer me to a rhymatologics to see if I have ankliosing spondalitis.
Its been years of complaining becausei cant get hydromorphone....which work...but morphine is more effective ive found for me.
So i started smoking weed at 32 after my liver transplant. I now smoke half a gram of THC consentrates a day, or up to 1000mg of THC gummies....at one sitting. Its insane how i can still be active and functioning like normal....it doesnt effect me like everyone else apparenltly. I hate it.
All of that and i still am in so much pain....everything hurts. But its years of asking and bugging my doctor.
He Basically tells me ...well you have alot wrong with you.....sooooooo.....
Months later i get my next appointment just for him to not do anything for me for another couple months till my next appointment.
Even the hospitals dont believe that 2-3mg of Morphone through IV is where my sweet spot is, where i can function and not hurt....i struggle alot with my tolerance being insainely high.
I dont even really get "high" from all the weed I smoke, and i hate it. I burn so much money to just hurt still ....but it takes a bit of the edge off the pain.
Sometimes....i do get the body high that I need, but its really the luck of the draw if im gunna numb out that pain in my S.I joints. It feels like I have rebar right through my sides.
Fingers crossed I can get some some morphine or hydros for home long term for daily use. Id be living a more fuller life. I struggle to do basic tasks with out growning like an old man....bending and crouching is really painful for me.
My brothers are 16+ years older and they can jump up and onto things and they can run....they have energy and the ability to move quickly....for me...everything hurts and i move slower.
Perhaps things will improve with more exercise now that im getting my life back on track.
It sounds like you developed ARFID (Avoidant/Restrictive Food Intake Disorder) since that childhood doctor experience. Maybe you’re already aware of this. In case you’re not, it’s a newly recognized disordered eating. I’ve had it since I was 1 year old. It’s somewhat difficult to find providers who know about this disordered eating, most of the time I need to educate them about it, though there are more and more providers who can help with it to some extend. At least they can provide understanding and support, which can be huge. I was lucky to find a nutritionist and primary doctor who are both trained to help with people having ARFID. Let me know if you want to know more about this or want to chat about it 😊
i still get angry too at the drs who didnt believe me or brushed off my sickness as something else (like my weight or mental health...) urgh
I was new to living in Pennsylvania when I saw my first GI doctor. Trying to explain how I'm feeling this bi**h doctor looked at me and seriously said
"Get a grip!" Its 5 years later and I'm suffering feeling nauseous all day every day. I'm too sick to leave home.
Omg, my 4yo needed a blood test for his endocrinologist. He's a T1D. Anyways, get the tests done and leave. And for some reason our local doctors, nurse, called saying
"your sons HbA1C is in pre-diabetic range of 53" (it's 43 at our latest appointment yay) and
I'm like "isn't that ok? Like I know we could do better but it's been 6 months"
"NO his is not ok, you need to come in as we think he has T1Ds!"
"Ummm he is a T1D and those bloods are for his endocrinologist"
"Ohhh"
It was a great convo
That is ridiculous!! I know exactly what you are talking about and it is concerning this kind of situation can happen so often.
@@LetsTalkIBD yes its very concerning and it makes me worried for future medical care for my son. Thankfully I haven't had this experience since. And his Endo is an amazing guy and very helpful.
Sending you good luck and thank you for this video ♡