I was admitted into hospital due to my severe weight loss caused by acute IBS symptoms. I was tested for everything including colonoscopy and endoscopy. Nothing was detected from the procedure or the biopsy. But I continue to have problems digesting food. I have been eating mainly blended food but still have severe cramps and diarrhea. Did have some chicken last night for the first time in months and today I am literally pooping chicken pieces. I have been prescribed some pancreatic enzymes but if anyone else can recommend supplements or medications t9 help digest and breakdown food I would appreciate it. My BMI is 14.8 so need to put some weight on but not easy if i do not digest any food at all
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GKT1969
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I think there are a number of other tests that can be done. I have no specific medical knowledge, but I think your liver, gall bladder, pancreas etc. need to be checked. You might want to think about a second opinion from a major medical center. Your BMI is way too low. Do you have any issues with anorexia? You do want to be seeing a good gastroenterologist to get to the bottom of this. x
hi there Thanks for the reply. I am working with several gastroenterologists and all my tests are negative. The cramping and unrelenting mushy stool prevents me from eating as I spend all day on the toilet. I now have contacted John Hopkins for help as I continue to deteriorate. It was nice to eat solid food last night but the consequences and pain make it impossible. I need intensive digestion care but no one can help me and I’m slowly fading away. I would love to eat but my condition prevents it. I’m frightened so any recommendations will be much appreciated. Thanks
I lived for some time in Washington DC and saw a gastro at Johns Hopkins. His name was Marshall Bedine. He is probably near 65 and I have not seen him for over a year as I am no longer in DC, however I did have a good opinion of him. He is also a Castle & Connelly top doctor. You could find him on their web site, and see if he treats your condition, or can suggest someone better suited. You might also consider the Cleveland Clinic. I also do have a friend who went to Cleveland (but heart related), and I know he was extremely impressed with them.
I should mention that I have no medical expertise, and also can't be sure that the doctor I mentioned would be appropriate for you and the same goes for Cleveland versus Hopkins. Just things to think about.
Have you tried the Fodmap diet? Also have you worked with a medical dietician. I was recommended to work with one (for a different type of gastrointestinal problem and she was very helpful, but it has to be a medical dietician for your specific problem as they are quite specialized.
Have rheumatology issues been considered? I assume the colonoscopy ruled out Chrome's, (sorry, this is how the computer insists on spelling it.) etc., but there are others such as scleroderma that may have a gastrointestinal impact. When I first developed IBS I was checked for that. The test is a CAT scan, but you have to drink I think barium before.
I hope that you are able to find help and a diagnosis as soon as possible as I understand you are frightened, as anyone would be. Another thought is has liquid feeding through an artery been considered? I did have an acquaintance who had to do this for many years. It is done at night and she was very healthy and adjusted to it. She was married, had kids and worked full time. She was not able to eat food at all. I am not suggesting that this is your case at all, just that there are real remedies if needed. Let us know how you get on (((GKT1969))).
Hi . I agree with b1b1b1. I think you should get liver gallbladder and pancreas checked. I'm in UK and had similar symptoms. No tests showed anything until my gastro send me for a MRCP which only scans these parts. It showed I had a diseased gallbladder with stones, sludge and a cyst. I had my gallbladder removed over 18months ago and I have been fine since. I ca eat and drink things I couldn't before. I hope this helps and hope you get sorted soon. It's called MRCP in uk not sure if it's the same in US. Good luck
I have been in a similar position to yourself for around a year. I have had chronic diarrhea for a year now, I have had all investigations possible, Colonoscopy, Endoscopy, Capsular Endoscopy and stool samples tested for various gastrointestinal conditions. I have had biopsies taken during the colonoscopy which showed slight inflammation. I have had my calprotectin levels checked which range from 400 to 1500 over the past year, so they are not on the normal range which is below 50. I was admitted to hospital in November last year due to weight loss and a BMI of 14.8, I did start to put some weight on but then I became unwell in March this year so have now lost weight again. I eat a very limited diet but I am on build up drinks organised by my Dietician and Gastroenterologist. I was first diagnosed with post infective IBS in December 2022 which they started treatment for but unfortunately my symptoms didn't improve. I am awaiting a SehCat test which is for Bile Acid Malabsorption as this can cause symptoms of chronic diahorrea. I have had a repeat colonoscopy with biopsies and have a small bowel MRI arranged in the coming weeks. I have started on a medication called Questran which is used to treat bile acid malabsorption, it controls my symptoms to a point but am far from being healthy, in fact I look anorexic at the moment. I am awaiting the results of my biopsies at the moment to possibly rule out any kind of collitis. I have been researching and my symptoms are very similar to Microscopic Colitis and that of Bile Acid Malabsorption. I have been unable to travel very far or hold down my job for a year now but am hoping in the next few weeks I improve enough to return to work. I would not at the moment contemplate going out for something to eat either in a cafe, restaurant or at work unless I was near a toilet as my symptoms can be so bad. There is a few tests they can do to check your gallbladder and pancreas as these all contribute to digestion. I at one point felt that I was not digesting food and every stool was runny, soft and mushy all the time plus I went to the toilet around 10 times a day at the beginning. I have managed with a variety of medications and watching my diet brought that down to 2 or 3 times a day. I have thought I may have a slight element of IBS too so try to follow the Low FODmap diet but not sure if it all helps really. I really hope that I get an official diagnosis soon but can completely related to how you are feeling. I just hope one day I can put on a little weight again and possibly eat a more varied diet. I do hope that this helps you a little as to what other causes there is for your symptoms. I was hoping for a quick fix with this condition but unfortunately I don't think there always is. I wish you good luck in finding a answer.
hi Sarah090174 thanks for your reply. Our symptoms and treatments seem almost identical. You have my deepest sympathy I know how difficult life is with this condition and lack of clear diagnosis. All of my biopsies and testing came back negative so it seems that my colon and stomach are not diseased and are without significant immflamation. Good news I suppose as it rules out a number of chronic illnesses but still no explanations for my relentless loose stool diarrhea and subsequent bloating, cramping and constipation. I’m sure you are as puzzled as I am that an illness that prevents us from living a somewhat normal life and leads to such dramatic weight loss cannot be identified. What on earth are we missing I will get the other tests yourself and other suggested but I’m giving up hope in all honesty. I cannot seem to digest any food even Low Fodmap has the same impact and consequence as every other food type. I literally do not know what to eat so I am resorting to an elemental diet. I do hope you get better and your symptoms improve please stay in touch and let me know if any treatment shows improvement. I will do the same. Let’s work together on this and hopefully something will come along that helps us both. Nothing would make me happier
Hiya, thank you for your kind words and reply. I can fully relate to you giving up all hope, I have done this many times over the last year. I will most definately keep in touch and try to update you. I do hope you manage to get some of the recommended tests done, as there are so many things that need to be ruled out as regards digestion. I agree your symptoms sound nearly identical to mine and I do hope that you don’t get to suffer as long as me with no physical diagnosis. I struggle to digest some of the foods on lowFodmap too. I have a very limited diet really but I also have the build up drinks to supplement my lack of food. I just hope one day I put on a little weight and look a little less anorexic. At the moment none of my clothes fit me properly and can’t afford to buy a new wardrobe at the moment. I will give a few pointers on my diet it may help you but may not, I have tried gluten free and dairy free which were fine for a short period until my inflammatory markers went up again. I have also not had any milk for 10 months which I found was a real trigger at the beginning and have so far not returned to it. I may try some lactose free milk soon as I am slowly introducing new foods each week and monitoring my symptoms. I also was advised by my dietician to avoid gravy on food in case there is an element of IBS in my condition as this can be a trigger. I also avoid spices, onions or garlic anything added to food as these can be a trigger too. I also avoid any pre packed meals now as you really can’t control what is contained in them. Another thing I avoid is chocolate at all costs and try to avoid plain crisps too. Unfortunately it doesnt leave very much to eat, some of my diet is low FODMAP and some may not be as I am no expert. Hope these pointers work and give you food for thought. My diet consists of toasted crumpets with dairy free margarine and a weak black tea for breakfast. Lunch is poached eggs with white danish bread toasted, a banana, a moist Farley’s rusk and half a small plain scone with a weak black tea. My evening meal consists of freshly roasted chicken breast and some roast potatoes. I then finish off with a small strawberry jelly and a weak black tea. Sometimes this diet helps me and other days it doesn’t. If I want an occasional snack I eat rice crackers or oatcakes. I have just had a small bowel MRI Study today which I hope may give answers but the after effects are really really unpleasant and the MRI scan is really tiring and uncomfortable. I just hope I feel better in a few days and can return to my normal diet. Hope this information helps and I am sure we can both get through this, keep me posted and good luck.
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