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Diagnosed with Crohn's Disease | Let's Talk IBD
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- Опубліковано 24 гру 2019
- It's been awhile since we talked about how I was diagnosed (if we even talked about it at all). I talk about about the tests and procedures I went through to be diagnosed with Crohn's Disease (Inflammatory Bowel Disease) and how it led up to multiple surgeries and ultimately a colectomy.
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Man your story makes me cry, because my doctor was not the best and because of him and mistreatment I had to have my colon removed.
Your story resonates with me. I had “asthma” that wasn’t responding to a maximum med regimen.I complained I still can’t breathe and it was very scary. For months they told me I just have anxiety, it’s all in my head, the meds are working, and so they put me on tranquilizers and I knew I didn’t need them because I’m not anxious. 6 months later we found out I don’t have asthma at all, lungs are totally fine! Instead, my vocal cords dysfunction and snap shut and close off airflow. I wasn’t making it up. I truly can’t breathe. But I had to take all the meds and their side effects they threw at me just to prove that I tried as hard as possible and was compliant, so they would take me seriously. It was so distressing for doctors to not believe youre suffering. And for doctors to disagree with each other constantly was confusing as heck!
I have a bag ! 20 years! No Chrons. But my son has Chrons! He was diagnosed when he was 16. He is 39 now! He hasn’t needed surgery. I know he is on a med for it. My journey led me to advocate for my self. Like you I searched for a doctor that would help me. I was told it’s all in your head! After (5) yrs. a doctor listened to me. So in July 2001 I had surgery to remove my colon! It was the best thing !
You look wonderful! I’m glad you are doing good with your recovery after your surgery!
You said one time in a video that when you was a little girl you wanted to find somebody that was going through the same things you were going through. I wanted you to know that you are that person you were looking for. Someone to relate with so no one has to feel like they're the only one.
So true…and what a beautiful thing to say!
@@fairywar Thank you I needed that right now and you don't know how much.
I'm speechless... Love from România 😘 you are so strong... I will always think of you...just to remember to count my blessings every day!
Merry Christmas Maggie! No Chrohn's disease here but chronic pain. Have had IBD for several years that thankfully is much better due to better eating now. I had issues with severe constipation basically since birth but much worse in early adulthood (20's-almost 30) I love your channel as well as The Frey life. You deal with so much and are so upbeat and positive. It is truly an inspiration. On my worst pain days I think. If she can do it I can❤
Amazing girl! I'have watched all your videos! My son is in the hospital recovering from a surgery of fistulas...He is 51 and have suffered from Crohn's disease since 18 years of age. Your attitude,sweetness and beauty is admirable...
You are really brave for sharing your experience. Thank you for sharing!
Merry Christmas!
I've watched some of your videos, and they both make me feel better and scared. My mom had crohn's disease, and passed away in 2014 from crohn's medication coma related problems. I didnt so much like her as a parent since she wasnt there for raising me, but I know she must have been in so much pain from it. I believe I am starting to have symptoms. Bowel movements are starting to become unbearable. A lot of food i intake makes me feel horrible. I'm so scared of the pain and the money it's going to cost to control the disease. But watching you definitely helps me know that I can be strong enough to live a good life with it
I just found your channel! I don’t have IBD but have many other illnesses, including gastroparesis caused by ehlers danlos syndrome and psoriatic arthritis. I have a feeding tube and a port and have been through a lot with my health. It’s always nice to see others sharing their story.
Merry Christmas and I'm glad you are doing well as can be expeted.
I was diagnosed in my fourths with crohn's. As a young child I always suffered with constipation and they gave me medication to help me with that. Had bouts of diarrhea aswell but mainly constipation. This went on for years. Getting worse and worse. Back then you just got on with it. I ended up in a and e department with bad cramps and vomiting etc. Gave me pain meds and discharged me . Went back to my dr and he ordered a colonoscopy and they couldn't get it up all the way. Was completely blocked. That's when they gave me my chronos diagnosis. Had right large colon removed . Still continual to this day to have issues . It's a everyday issue for me. That's just a brief overview. But beening diagnosed later in life has not helped. But it is what it is. Love your videos and glad you recovering well from surgery
Maggie, you look fabulous! I hope your starting to feel well too 💗 My daughter has ulcerative colitis and was diagnosed at age 15. She’s 22 now. She has tried all the drugs. On xeljanz now. Still not under control. She also had a lot of bad constipation when she was 7 and 8 years old. Finally diagnosed after losing like 20 lbs in 3 weeks and 25 bathroom trips a day. I pray that something works for her. Not many drugs left 😕
I'm glad you are feeling better. Merry Christmas to you and your family. I love your videos.
i was diagnosed about 2 years ago
and everyone thought i was anorexic because i was so skinny and i would purposefully eat in front of people to prove i wanted to gain weight. it’s really hard to be skinny shamed but i now on humira and have gained a good amount of weight and almost into remission!
Great video as always. So happy that you are doing better merry Christmas to you and zak.
Merry Christmas!! My very first GI I saw 7 years ago, and never saw again because he was TERRIBLE, didn’t want to scope me because he said I was “too young”. I was 22 and had lost a ton of weight and having constant diarrhea. Somehow that flare eventually went away and when I had the flare symptoms again I saw my doctor from my hometown and he got me in to see a great GI who as soon as he saw me and heard me talk suspected UC, which he confirmed when he worked me in for a scope. Just crazy how much difference a good doctor makes!
U had blood also with diarrhea or just diarrhea?
Merry Christmas Maggie and Zak. Love the new intro. Take good care of yourself too!!🎄🎁
Thank you for sharing your story hun, I have crohns disease was diagnosed about 10 years ago and on 6mp I have my good and bad days
Can't help but to love her . What an amazing girl ❤️❤️❤️ glad to see you being home for Christmas dear . Get well soon 🙏🙏🙏❤️❤️❤️
Merry Christmas Maggie and Zak. I hope you have a happy new year.
Merry Christmas to you and Zak and all the very best in the New Year. You look good. Here’s to moving onward and upward.....my Mom use to say that to me 🙂
I was diagnosed pretty quick with UC in 2006. Tired several drugs. Enemas and remicade. After 10 months and losing 70 pounds we had the colon removed and a jpouch made. Been 13 years. Now have crohns in the pouch and on the third biologic. Best of luck healing and thanks for sharing.
I love watching frey life mary and peter are they are strong warrior's I'm new to these vlogs love them i am a crohns warrior a big thank you, you and zak are so inspiring couple im learning so much more about Crohn's been in a flare nearly 12mths now
I have had intestinal problems all of my life. Mom had terrible crohn's. I have always had nausea. I had a couple of bad bleeds and ended in the hospital for the first one. If I have irritable bowel nothing has really helped. I have both diarrhea and constipation except that now that I am 78 years old it is mostly nausea and vomiting and constipation. My doctors have done colonoscopies and there don't seem to be ulcerations but still, this thing has taken over my whole life. I plan my time away from home in two hours intervals because I never know when I might get nauseous or suddenly need the bathroom.
You have suffered as badly as my mom and I feel much sympathy. But you are a strong minded person and cope very well despite your problems. I hope you are at a place where nothing flares up and you are healthy forever. You go girl!
I started getting sick during high school but never really knew what was going on with me. I was nauseous all the time, was very sensitive to certain foods, and usually threw up within an hour after eating. My parents weren't the type to take us to the doctor unless we needed to for school documents and for most things we were told to "toughen up" or "stick it out and it'll go away on it's own eventually". So most of my problems I just hid. It got to the point where I thought I had an eating disorder and so did my friends but I was still a chubby kid so my parents didn't see any difference in appearance. I would go days without any sort of appetite so I just wouldn't eat and sometimes I'd pass out in school or have to leave from being sick and dizzy. At one point I had ovarian cysts and the pain was terrible. Later on, I had similar throbbing pains and nausea like I did with the cysts but my gyno assured me I no longer had any more cysts and that my lady area was completely healthy and normal again. Pains and nausea still got worse but I chocked it up to having another cyst or something. I just delt with it for a few years, even after school. It took dating a guy with crohn's three years after high school who was very concerned with the location and severity of my pain to be like "hey, that's where your colon is. That's not okay to stop dead in your tracks doubled over in pain like that. You need to see a doctor." This was in the middle of the state fair grounds in 2018. That is what got the ball rolling initially but doctors thought it was just my stressful lifestyle. I got really sick again and then way worse in December and that's when they had to begin all the testing. I was diagnosed by my family doctor with indeterminate colitis, then crohns, then the GI said ibs, then by April they had decided crohns again. Since then, so much has happened in just one year.
You are amazing good luck and happy new year.
I won’t tell you my whole story because the reason I have a stoma is because of chronic constipation (I was constipated as a new born!) but then have had huge issues that included developing a rare genetic pain disorder which meant that to finally get help with my bowel I HAD TO CONVINCE (with the help of my pain specialist - who originally was the one who told me I’d need a partial cololectomy) THE SURGEONS that I needed to have this surgery. I remember waking up and knowing right away that it worked and took the Horrible pain the the bowel was causing me away.
Would have been wonderful if took ALL my pain away, But my pain is reducing and I am reducing my needs for pain meds which is awesome and for the first time in years I actually went Christmas shopping this year!!
Maggie, thank you for your video’s they are what prepared me for what I was coming after the stoma surgery and even the ongoing weird things that happen I don’t feel worried!
I am hoping your pain settles soon, just remember it takes time - but also just because you take an opioid for a short time doesn’t mean you will become addicted or dependant. As your body doesn’t need it you will forget to take it and voila no more opioids! Anyway - thank you, happy holidays & keep up the great work 💜
I cant imagine you having to go from 8 to 11 with out knowing what was wrong. When Makayla starting having symptoms at 7 it was so bad I was so ready for a diagnosis after a year of her suffering when she was diagnosed with crohn's it didn't even scare me I was just ready to get her feeling better.
I hope you know you are such good energy and I hope to find friend like you in my life
I was diagnosed with Crohns after 18 months of barely keeping anything down. I actually ended up so backed up from not being able to poop that I started throwing up my stool. I had many many tests and doctors telling me that it’s “just ibs” or stress from grad school. I changed 6 doctors before I had one take me seriously. I have since been diagnosed with Gastroparesis as well which explained why stool was able to get past the polyric valve
Nice to have an updated video about your journey im thinking of doing an updated one of mine too on my channel as its my stomaversary coming up soon. Xx
I love listening to your story times Maggie)
Hi Maggie, you look great, hope you are healing ok . Merry Christmas to you and Zak and the doggie!x
Thank you!!
I love all of your videos and how positive you are about everything it really is inspirational.
We are still trying to get a diagnosis for my 4.5yo son but thinking we will probably have to change GI dr before we get any answers. My son started having issues with constipation and then diarrhea switching back and forth when he was around 2yo he also started refusing to eat or eating very little when he was having diarrhea. The 1st GI we saw ran no tests and said he had toddlers diarrhea and was a picky eater (he ate anything and everything we gave him prior to symptoms starting). When he was 3.5yo his symptoms got worse and he started going weeks without eating and was still having acidic slimy painful diarrhea at least 4x a day but usually closer to 8-12x a day. We changed GI and the new one ran a bunch of blood test, allergy test, and stool test but said everything was high normal but still normal. At this point he had also been diagnosed with ASD level 1 so his GI decided not to look into causes of his symptoms anymore and that it was all feeding aversion due to his ASD. Well he now has a GTube because he refused to eat for over a month and dropped from 30lbs down to 20lbs. He is back up to 30lbs but still having horrible pain, diarrhea, and not maintaining weight and absorbing nutrients like he’s supposed to. His GI is still insisting that it’s all because of his ASD and if we can get him to eat more he will be fine. The GI refuses to treat his symptoms or look for answers as to why he’s having these symptoms and it’s so so frustrating because I know that this is not a symptom of his ASD there is something else wrong and they refuse to even look.
If you or any fans have suggestions on how to help my guy get a diagnosis and help please please reach out to me we could use all the help and support we can get.
PS - he was 25lbs 2ft8in at 2yo and is only 30lbs and 3ft at 4.5yo.
Got diagnosed while having cdiff. All thanks to you!!
Very contagious and serious intestinal infection.
Merry Christmas to yourself and zach and dad. Xoxo
You look wonderful! Happy Holidays!
I haven’t met many other fellow Crohn’s patients who also experienced constipation a lot and a lot as a child. In your case it makes sense w/ the stricture. Like you were saying, it can be hard to find a dr who monitors you enough. I’ve def experienced that horrible ER trip peristalsis like pain. 😖So glad you are feeling better and I hope your healing continues so you can move on from that colon 😉
It was a long journey for me. I had some symptoms on and off throughout my late twenties, but moving to Korea for a job is what kicked it into high gear. The first weekend there I ended up in the hospital because I was constipated and feeling sick. I kept going back to the clinic, but between the language barrier and not really understanding what was happening to me, I was never going to get diagnosed there. All I knew was how much pain I was always in, and how much weight I was losing. I ended up losing my job because of my illness preventing me from working. I came back to the States and continued to struggle because I didn't have insurance and I couldn't afford to see the doctor. Finally, after months of torture, I ended up in the hospital and having a colonoscopy that confirmed Crohn's. Days later, they resectioned my bowel and removed one of my ovaries that had been destroyed by infection. Since then, symptoms have been much milder, but I still struggle from time to time. That was 9 years ago!
Love the hair! Beautiful!
You are sooo strong
My story is pretty unique. I first developed fistulizing crohns and many abscesses all over my abdomen and even my bottom. Unfortunately developed strictures and went through a faze of muscle wasting and severe malnutrition. I finally had the surgery and as soon as I left the hospital I was rushed back in with a very rare condition called superior mesenteric artery syndrome
Merry Christmas you look so well already, I got diagnosed 3 half years ago I also struggled with consterpation as a kid didn't go for months they just kept giving me laxatives which didn't help so nothing processed. I literally got to 34 years old and it all started to go into diaharria or just blood I knew what I had because my dad has ulcerative colitis which is what they diagnosed me at first with but know they say I have crohns colitis, it was a struggle camera's both ends, I had steroid foam tablets, suppositories, inflammatory tablets which stopped working then was put on mercaptupurine tablets they made me sick to so I had to stop them.
Then I had inflixamab infusions which gave me lupus so had to stop that then went onto vedolixamab and then that give me high blood pressure so constantly side affects, I'm currently on no medication its been 33 weeks with nothing because I had to let the last drug get out my system, so waiting to hear what's next. You are so brave and I'm glad you do videos like this because it really helps I was a scared of surgery at first but if I ever have to have it I will remember how well you deal with it because you have been though so much your a inspiration to people who have crohnic illness so thank you so much.
Happy Christmas and all the best for your recovery xxxx
Hey there! My diagnosis pretty much sucked. I started having bloody diarrhea and sharp abdominal pain when I had to go to the bathroom. I slept a lot as well because I’d have to go several times during the night. I had a colonoscopy pretty quickly after the first showing of symptoms and my GI said he thought it looked like UC but wanted to hold off on treatment until biopsy results were back. Well...he fell off the face of the earth and never heard from him again. At the time I didn’t have insurance so I got health insurance and then needed to see a pcp to get referred to a new GI. During that time (it took a full year) I started having more frequent bm which steadily became more and more bloody, felt more and more like knives ripping through my colon and I started sleeping more. I went to the Er three time during that time and got a CT scan each time which showed the disease progress through my colon until I was admitted for a blood transfusion, got a colonoscopy which showed severe ulceration and bleeding through my entire colon. I’ve had the disease for 10 years and have gone through almost all biologics and maintance drugs because one dr said my disease is med resistant or it gets smart and begins recognizing the drug. I am currently on mercaptiporine, however, I don’t metabolize it very well so I have to be monitored with weekly blood draws and can’t go above 50 mgs and even then my white cell count dips below normal so I get pulled off it for my white cells to rebound and then get out back on. After failing my third biologic (Entyvio-allergic to remicaid and humira didn’t even touch my symptoms, Entyvio creating a stricture) I had surgery to create a loop ileostomy sept 17, 2019 and started stelara in October 2019.
Thank you for being so open with your story!
Your one awesome, amazing woman!!!🎄Merry Christmas 🎄 & a 🎉Happy & Healthy 2020 New Year🎉!!! Thanks for all your knowledge it really does help people a lot, I know it did me!! ❤️🇨🇦
Is there any way to get a invisible illness shirt in kids size ? I wanted one for my daughter so I could match her. I love seeing more videos from you!
Merry Christmas Maggie!
I'm still fighting for answers with my own gut. The Cleveland Clinic gave me some, but I still don't have a definitive dx. All I know is that my prolactin levels are off the charts high and I can't get "cleaned out" sufficiently for a complete colonoscopy. Once they get right past my sigmoid, they abort. Then, nothing.. no further tests, just talks of trying again. I'm here to tell you! If a gallon of Golytly can't clean you out, there's a problem.
God bless you guys, we love you 🤠
I'm totally crying watching you cuz nobody believed me either! A few years before I ended up with my ostomy I told my doctor more than once that I was always nausea, in pain and was lucky if I was able to "go" 2-3 times per month. I know now how terrible that was BUT I told my doctor and he never warned me of the dangers of severe constipation and I've been that way all my life... all he did was give me anti-nausea meds and more stool softeners (which i told him they make me swell) The only time I can "go" is if I use meds.
I still need to have testing done especially endoscopy & colonoscopy.
I had all these issues ever since I can remember.. never been diagnosed or anything so this is only IMO... making things so much worse 5th grade rolled around I ended up having extremely severe acne from 5th grade til my early 20's and was put on multiple antibiotics for many MANY years. Main ones I took the longest were tetracycline (8-9 years) & Eurythromyacin (5-6 years). I was a teenager so back then nobody knew so i especially had no clue antibiotics were terrible to take daily like that.
To top it all of nicely...I've been on Zantac(Ranitidine) for nearly 15 years and now I'm hearing THIS med has some pretty scary & nasty side effects going on...
It all started when I was very young.. I mainly remember I'd get questioned "what are you doing in there?!" Getting yelled at for taking too long in the bathroom...i also had the blood issues darn near every time which finally my mom took me a few years later when i was 12.. I can't forget because all the doctor did was TRY to put his finger in there which it was already raw & painful etc... It was traumatic and so I NEVER complained again...well that is until i almost didn't make it last year & ended up with this thing.
Um apparently I'm writing a novel... 😆 Thank you for sharing so much of yourself Maggie! Especially the details most people avoid talking about it is really very helpful. You're truly an inspiration and an incredible human!
Please take it easy for as long as you need to properly heal. 👋bye bye for now stoma buddy! (Sorry this is so long!!!)
how its going on ?
What are the dangers of extreme constipation?
Thanks for info on this disease. Do the steriods have side effects
An interesting video. On the 8th of July this year, I woke with very bad stomach cramps. I saw my GP, and he diagnosed "IBS", and gave me medication to take. No improvement, so that evening I phoned the out of ours GP Service, and ended up admitted to hospital that evening with suspected appendicitis. Following scans the next day, the suspected "appendicitis" turned out to be a twisted bowel :-( So emergency surgery the next day, thankfully no stoma required. The surgeon did comment on the amount of scar tissue surrounding my bowel. Almost 6 months on from my surgery, I'm still suffering from bloating etc. But thankfully mostly on the mend now. I am concerned about what the future may hold though...
MERRY CHRISTMAS 💚
I was told at the start of Crohn's disease that it was T B. It wasn't. A doctor done a flexible sigmoid and biopsy and when the results came back it showed I had Crohn's disease. I also had erathema nodosum on my legs which looked like big burns. It was a horrible experience that just got worse.
I had been having stomach problems since march that have been giving me excruciating epigastric and abdominal pain. One er visit the dr suspected crohns or ulcerative colitis. Went to see a gi specialist in september and she immediately suspected gastroparesis. She was confused as to why they though crohns or UC. One gastric emptying study and endoscopy later and I have a diagnosis of moderate to severe gastroparesis.
I haven't been diagnosed but I have been having so many issues for years yet no one is able to figure it out. It's so frustrating
brave and positive
I'm 23 years old. I was diagnosed with crohn's disease at 22 years old in january 2019.
I've had symptoms since i was about 4 years old. It was on and off. I got a really bad flare up when i was 15. I realised that when i would eat dairy my symptoms would get worse, so i stopped eating dairy and i got very deficient. I was about 90lbs before my flare up and got down to 80lbs during it. I saw my pediatrician and she told me i was only lactose intolerant and there was nothing else wrong with me.
In 2016 at 20 years old. i saw my first gastroenterologist because i was in another flare up. He was horrible and didnt want to do any testing and said i was vomiting because i was constipated and when i told him i had diarrhea he said i had diarrhea because i was depressed. I stopped seeing him and asked my family doctor for another opinion. I saw my current gastroenterologist in 2018. He is wonderful. He diagnosed me with something called gastroparesis for the excessive vomiting. But he wasnt satisfied and wanted to do more testing. I finally did a colonoscopy in november 2018 and in january 2019 i got diagnosed with crohn's disease because of the biopsy results.
You look marvelous
You' re so pretty and brave. God bless you.
Happy Christmas, Maggie! Give the puppies some scratches! My interesting story: at age 15, my pediatrician thought I had crohns but my mom considered it a stupid stomachache. I complained about the pain constantly but it was assumed to be acid reflux. I am fat, so stereotypes colored doctors perceptions and meant they ultimately wouldn't refer me to a GI specialist. (Fat people don't get crohn's, they get ibs) the pain returns in regular flare ups and gets worse every time. In 2017, I got so constipated that i couldn't fart or pass anything at all for three weeks. It was brutal. Every episode gets more painful and in the past few years I've started noticing a lot of dark red blood in my stool a few times a week. Sometimes it escalates and the blood refuses to stop. The pain gets so bad that sitting up is excruciatingly painful. At my first colonoscopy they kinda sped through it and didn't visualize my rectum (the area where all the pain is) or tell me why they skipped it. Biopsy results showed microscopic colitis and no one told me. We all just wondered why I have intestinal bacteria in my stomach. The GI I was seeing kept prescribing metamucil, which was causing severe bleeds. She kinda gave up. Now I'm at the point of almost passing out in public due to the pain and just...not functioning. Sometimes when I go to the bathroom I have almost passing out episodes and throwing up becomes an issue. Currently in the process of trying to get an urgent GI referral processed. I really wish it would either go away or I could just ...get some help with it. I've had to correct er staff sooo many times that it is not belly pain. It's in my rectum. No, not on my skin. Inside of my body. I went to the er during a bleeding episode that was making it hard to walk once and clearly told them it was a large amount of blood in my stool, and the doctor rephrased "so you're having dark stool?" And sent me home without doing anything. Hopefully I'm going to get some help this year. I don't know how much worse of pain I can personally cope with. I think for me the annoying thing isnt that they cant figure out what's going on. They seem to actively be trying not to figure it out.
It took me over 2 years to get a diagnosis. I got very sick at age 19. And I spent 2 years mostly inpatient. Countless colonoscopies and upper GI scopes. Nothing. Other than gastritis and inflammation. So the doctors basically thought it was all in my head. I saw specialists in different states. I did everything I could to convey what I was experiencing was real and very abnormal. At the end of those 2 years of sheer agony, I got down to 70 lbs and had one foot in the grave. I was wasting away. I'm 5'8" and normally about 140 lbs healthy. It wasn't until the brink of death that I finally got diagnosed. And it took just trying a treatment first. When it worked they realized I 100% had an autoimmune disease which was most likely crohns. Then after another year of being on prednisone and imuran, they finally found the disease inside the lining of my stomach. The thing with these diseases that most doctors do not understand, is it doesn't always manifest in a textbook fashion for every patient. It's not always black and white with autoimmune diseases. It's often a lot of grey area. And if they weren't taught it in med school, in their minds, it simply doesn't exist.
I'm happy to say, I have been in a state of remission for over 2 years now, and I'm 32 years old. For over 10 years I suffered most days. More bad days than good ones. And I never thought I'd see the bad days end. But they did. And that's not to say it won't rear its ugly head one day in the future. But for now, I am doing great. And it took a lot of strength and courage to get here. I chose to finally take a different path to wellness as I'd come into contact with several Crohn's sufferers who too put their crohns into remission strictly by changing their diet drastically. I always felt like that wouldn't work for me bc it always took medication to give me some form of relief from my pain. I struggled believing that diet would fix anything. My stubbornness and lack of faith in these people I had met, prolonged my suffering far longer than it should have. I finally decided what the hell do I have to lose? Absolutely nothing! So I did extensive research on the Keto diet, and I found a GI doctor who was willing to support my decision to go this route. I wanted to ultimately get to the point where I could get off of the immune suppressants that were causing other long term issues that I knew I would ultimately deal with for the rest of my life...joint and bone deterioration, blood diseases etc. So, after 3 months on keto, and one month taking the lowest dose of my medication, I was able to get off of those horrible drugs completely. And 2 years later, I'm working a full time job again for the first time since age 19. I got my life back.
The moral of this testimony is thus: do not give up. Keep fighting the fight. Because it will get better. I promise you. The suffering will cease. You HAVE to be your own advocate. You have to be patient but also determined. It's very easy to feel completely defeated when enduring what you endure. But I promise that the fight is worth the end result. Find a GI who will LISTEN TO YOU!!! They ARE out there. Seems like they aren't but they are. Be willing to try everything within reason to find the solution that works for you! Be open minded. And a support system is soooooooo important. I would 100% not be where I am without the support of my mom and sister.
I'm going to pray for you. You aren't alone in your suffering. God hears your cries and pleas. This too shall pass. The 2 positives to enduring pain, your faith and closeness to God will expand greatly. And 2, the pain is a reminder that you are still alive! And that in itself is a gift.
Stay strong love. ❤
@@MeredithHammett the only thing with keto for me personally is that vegetables and fruits cause me a lot of pain and bleeding, but besides that i do try to focus on protein. it's reassuring to know i'm not alone. thanks
@@wesmoran5215 you cannot eat fruit on keto. And most veggies aren't allowed either. You will find an answer that works for you!
@@MeredithHammett yep! Diagnosis and medication will most likely be it. I appreciate the intent but I'm not going to go keto for my IBD. Thanks!
Sounds like ulcerative colitis and any Dr that wouldn't check for that specifically isn't deserving of a medical license.
positive and very tough girl
I'm 57 and have had Crohns since I was 12
I added this to my favorites. I fell aslee watching. Maggie I'm not feeling ell. I am so worried I'm dry heaving I will be playing a video game and due to anxiety I start gagging and I get sick. I was sick this moning. Maggie you are amazing. I like you alot. It feel amazing to have you as a fried who undersands what I deal with. I don't want anyon to go through what I went through. My nephew cameron he would lik you becausw he gets mad when peole make fun of me his older couskn made fun of my colostomy and maggie my nephew is 9 years old. I bonded with him since birth he knows I wear a colostomy bag and my mom says I will not be going through the j poucn surgery because I hav had abdominal surgeries and he thinks it is not worth risking my life because cameron my baby nephew protects me maggie if the world was full of camerons I would be even happier. I got a pink camping cair but I don't have friends to hang out with.. I just want a friend who lovs me. I miss my memre and Christmas is no fu. Since she died
Isn't the reason that doctor didn't start you on remicade or similar is b/c it wasn't yet approved for crohns disease? or at least not in children (can't remember how old you are) ?
Possibly? Although i had friends on the medication at the time, so unsure. I'm 26
I started remicade for crohns in 2012 and I was 25.
Hi Maggie
I had y rdctum removed 20 years after havin my colostomy bag. I ha bleeding from my rectum so they had to do it.. maggie you make me feel as though k am normal. I was so willing to risk my life haing the j pouch surgery because I feel like I'm broken. They sowed up my butt crack so I didn't know they could dk skmetjing different but with my mom she sahs I'm nkt able to get the j poucn because she says it is not worth risking my health. I jut want to be excepted and not have people making fun of mw. I trust you because I know you understand what I feel like and I feel as though I'm broken. My cousin who is 12 years old says I'm not broken but I'm handsome. I wish there where more kids like her
What diet do you follow with Crohn's
Nothing too particular! I am pescatarian but that isnt for crohns!
Well I've been dealing with "a gi bug" for years now and everyone tells me the same "it's all in your head" I know it's not. I have the other problem I can't loose weight but yet a few min after I eat I'm in the bathroom and because of my surgery for acid reflux food can't come back out my mouth, and the gi dr that just did my colon well he's not worth the powder it would take to blow him to hell.
I am one of the crohnies!
This is 2021, so how is Maggie now ?
Doing fairly well, thanks! 🙂
Can't believe you have to pay for surgery 😮 I also get 30 ostomy bags for 2.23 USD
💪💪💪💪💪❤❤
you went through a lot maggie
Would you ask Becky to put her butt stuff on You Tube as not everyone uses Instagram. Thanks and I'm pleased your doing so well.❤️
Why not carnivore diet?
I love the animals too much - been pescatarian for 4 years
@@LetsTalkIBD really bad idea
@@LetsTalkIBD people eat plant, one day the ruminant animals will have nothing to eat.