Hi, I've had this lovely illness for over 10 years now. (I don't know why I had the impression that it would "burn out" but I remember Dr. Yazici telling me that when he diagnosed me in 2004 so I am pretty bummed that I still have it.) And now I'm even more bothered because it seems to be attacking my intestines and it's not only super painful, but a little scary because of the risk of perforation.
So not only do most doctors not know much about Behcet's here in the US, but they know even less about Gastro Behcet's. I'm really frustrated because no one knows what to do. The doctors were initially so off about the problem that they removed my gallbladder in an emergency surgery because it was so inflamed. But 2 months later I went into the ER for the same intense pain and they did more tests (that they should have done before surgery) and it turned out my stomach wall was so inflammed it was pressing on other organs - and there is at least one giant ulcer inside that has been bleeding. They put me on regular peptic ulcer meds hoping that would help but it hasn't and I've been in a lot of pain for almost another month.
Does anyone have experience with Gastro Behcet's? What was it like? What can you do for it?
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kdgh
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Where do you live in the US? I might be able to find a GI doctor who can help. Also, if you send me a private message, I can probably forward some other GI-related info to you.
The American Behcet's Disease Association has a registry of patient-recommended doctors. One doctor is listed for Salt Lake City. Here's his info:
Dr. John Zone
4B454 School of Medicine
30 North 1900 East
Salt Lake City, UT 84132-2409
Office Phone: 801-581-2955
Referrer's Conmments regarding this Doctor:
When other doctors don't know, they send you to Dr. Zone. He specializes in Immunodermatology. He is up to date regarding Behcet's. Excellent bed side manner.
Hi kdgh,
I feel your pain! I have had abdominal pain after eating, epigastric and abdominal tenderness and weight loss since last October. It's only now that I am being taken seriously.
I am awaiting a wireless capsule endoscopy ( camera pill ) to check my small bowel as that's where most Behcets abdominal lesions are, it's an area that conventional endoscopy doesn't reach.
My faecal calprotectin ( a substance that's produced by the bowel in response to inflamation ) was raised, it would be worth getting yours checked too.
If my capsule endoscopy is positive I am to be treated with anti TNF's ( a biologic ), I don't think that regular ulcer medications will help!
I hope that you manage to find a Gastro to take you seriously.
Hi! Thank you for your message, but sorry you are also dealing with this! I am going to push for a biologic as well because Imuran/colchicine/prednisone aren't cutting it. Rheumatologists have just been hesitant to try something else because my tuberculosis skin prick test is positive, although my labs for TB are not - so when they consulted with Dr. Yazici at NYU he said that most Behcet's patients have a positive skin prick test but that I shouldn't let that stop me from taking an anti TNF. Have you also had that experience?
They didn't do the Faecal calprotectin test - that seems like it would have been a good idea! During an endoscopy the Gastroenterologist just did a few biopsies that showed inflammation. I also thought they would do a capsule endoscopy too, to look for any more ulcers. I lived in CA and was treated at Stanford for 6 years and they wanted to do that there and had really great doctors. Now I'm in Utah and not finding quite the same level of treatment or concern and am still waiting to get into a rheumatologist (7 months)!
I hope that you do get yours managed so that the intestinal ulcers don't become dangerous. For many years I had similar, but less severe symptoms, and was diagnosed with IBS (on top of Behcet's and Fibromyalgia), but the pain has gotten a lot worse. Is yours really bad? And if so, what do you do for the pain?
I haven't been checked out for TB recently. I think they do a chest X ray before commencing biologics and TB is one of the things they are looking for.
As for pain relief I find the only thing that works for me is heat! I have a hot water bottle permanently attached to my abdomen. To a certain extent I can control the pain by not eating ( hence the weight loss! ). I eat small amounts often, if I do eat a normal meal then the pain is severe and lasts 2 to 3 hours. Otherwise I am conscious of it all the time but it's bearable.
Over the years I have tried all the NSAID's ( Ibuprofen, naproxen etc ), Tramadol ( doesn't work for me ) and now I find that codeine makes me feel nauseous and yucky plus doesn't do anything for my pain. Drugs like Gabapentin and Pregablin makes my vertigo worse and doesn't help the pain. I just put up with my joint pain, jaw pain, headaches and abdo pain now. The next step up painkiller wise would be morphine etc and I don't want that. I find walking every day keeps me mobile and stops everything stiffening up!
I hope you get in with a good Rheumy soon, I will let you know what my capsule endoscopy shows.
I get ulcers all up and down my esophagus. I am always put in the hospital because it is impossible to swallow my own spit and the pain is horrendous. I feel for you.
Gastrointestinal has always been my worst symptom and pain from the age of 9. I am now 41 and still the same. I was even wrongly diagnosed with Crohns at 14 as they didnt know what else to call it. I ulcerate from the lips through mouth throat oesaphagus stomach bowel out to anus. Had many surgeries to take infected bowel away. The ulcers are not typical crohns in fact really unusual! Infliximab worked fantastic for all BD symptoms including gastro and had 3 years free of pain etc. That was 2004 and since then nothibg has worked to the point of having to have Bone marrow transplant as my next treatment as i am so difficult to treat. Something not to be taken lightly and only if i am stable enough for it as currently not. Hope you get some treatment that works for you x Hugs Christine x
Hi, I have just came across your post I know how painful this can be, please believe me. I in the end I had a stoma bag - ileostomy bag. Its really ugly but it has helped me immensely. I had ulcers in my back passage and everywhere else and going to the loo was vile. I have put on my page a bit about my journey but your more than welcome to email me or private message me if you want to know more. wendy_moore1@sky.com.
Thank you! I am actually having an endoscopy/colonoscopy tomorrow and will find out more. I guess the Rheumatologist wants to rule out Chron's Disease (in addition to Behcet's) and also just see what's going on in there. I had heard that a capsule endoscopy is even more helpful but we'll see. I might email you if I have more questions after tomorrow Thank you.
I take enzymes & probiotics & drink lots of alkaline water (Dyln water bottle); it does helps. I also take Nexium daily. It's a never ending cycle. Also I went totally gluten free about 4 years ago -- a huge difference!!!! I don't have Celiac Disease; but many of my relatives do. Obviously I have gluten sensitivity. It's a hard diet - I love gluten! I make my own foods - no over the counter foods are any good, except a few. I experiment with different flours, Cassava flour is my favorite - the closest to regular wheat flour. I stick to all natural foods, no preservatives. Hope this will help us. The doctors really don't know much about how to help us; but we need to research & experiment for ourselves!
Much success to you & others who suffer from this horrible disease!
Hi kdgh, inflammation in my intestines is a very frequent visitor in my life. From gallbladder that's enlarged from inflammation to ulcer on the duodenal wall to a full on attach of diverticulitis. My Dr has recommended to stay on a high fiber diet as constipation/diarrhea is also frequent. The only problem is if you have fruit with hard seed for instance Guava or Passion fruit etc. The smallest item that remains in the bowel causes inflammation to flare up and you have to be careful of that. I am on permanent Ulcer medication called Nexiam 20mg morning and night. I am also currently on Arava 20mg but going onto Biological too as the ulcers are to frequent. My TB prick test was positive too, my specialist said we will continue with biological but with any side effects we will do a charcoal flush. I found my Gastroenterologist believed me only when my Rheumatoid specialist wrote to him and since then feel better that they are on the same path of helping me. Pain wise I can not take anything like Diclofenac as they hurt my lining as does Ibuprofen. Any suggestions for pain medication that worked for you would be welcome? regards and hope you're healing
I have intestinal distress too. I had my gall bladder removed because it became completely unresponsive, and my appendix was removed because of a rupture. My pancreas regulates sugar (insulin/endocrine) just fine, but the pancreatic exocrine (digestive enzymes/acid) function has failed.
I take several medications to deal with my painful belly that I think may be helpful to you:
1. Creon- Pancreatic enzyme replacement
2. Citracel Powder, sugar-free, over the counter. Mix two tablespoons in 8oz of water very quickly and drink it down as fast as you can before the substance gels. If I miss a single dose, I feel it.
3. Gabapentin - helps with chronic pain without addictive properties.
Hope this helps. Good luck on your road to perfect health!
I am in the process of being evaluated by the GI and Rheumatologist for Behcet. Colonoscopy showed ulcers in Ileum. They don’t think it is Crohn’s even though a different GI diagnosed me with Crohn’s 10 years ago. GI symptoms are long term....... Do any of you find that certain foods trigger flare ups?
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Thank you.
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