I have recently had a colonoscopy that showed ulcers, inflammation and odeama in and around the ileum valve and ascending colon. I wondered if anyone else has ulcers in this region as I have read that it is quite rare for Behçet's to have gastric ulcers?
The Histology report, by the way, does not rule out Crohns...I understand that it is difficult, in some cases, to differentiate between these 2 syndromes, but I am beginning to suspect I might be suffering from Crohn's rather than Behcets. I have arthritic pains in my hands, feet, upper and lower spine, ulcers (nose, mouth, genital and peri-anal) significant fatigue, brain fog (used to get terrible headaches but these stopped), frequent ear , jaw pain and dizziness. I am British, so are both my parents, all my grand parents and their parents too. I was mis-diagnosed with Herpes at 18 years...then diagnosed with Behcets at 46 years, I've just turned 49 years. I didn't respond to Aziathiprine, or Mychophenolate (cellcept) on this for over 1 year, and I've just started Infiximab infusions. ( I cannot imaging life without suffering from these symptoms, especially the ulcers, but it might happen with the Infliximab )
Another question, is: when a colonoscope is performed to query Crohns, should biopies be taken even if ulceration is not visible?
I'd appreciate any comments.
Kind regards
BB
Written by
Bethb
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Hi and welcome. I have suffered exactly the same symptoms as yourself including ulcers in the colon and stomach bleed these were 14 and about 10 years ago. Recently had another colonoscopy and endocoscopy and all is well. I have been suffering for over 30 years and it took 12 years to get a diagnosis although my main consultant and a couple of doctors didn't think it was BEHCETS at the time. Since then so many of the symptoms I suffered with for the first 20 years are generally mentioned with all BD patients as now there is more knowledge, research and paitients the symptoms, diagnosis eat are much better and quicker. I think I have tried all the meds at one time or another except the most recent ones but the one that really helped me was Colchicine which I manged to take for 6 years until the stomach bleed. You will have remissions and life does go on. I had another child, divorced, remarried and continue to work par time as often as I could. I am now in my sixties and the best advice I can give is at the onset of any flare you must rest, and take the meds for at least a month before giving up on them (many have side effects but you have to balance that with the disease itself), and be positive and stay strong. If you have more questions or need advice in anyway please message me privately. I'm sure you will have more replies from other members which will help.
Depending on the part of the world a BD patient is in, GI involvement like you're describing can happen in up to 4 out of every 10 BD patients. The amount is even higher in East Asian patients. The amount is a lot lower in the UK, though (fewer than 1 out of every 10 patients, according to research studies).
Please give this 2014 article on "Similarities and differences between Behçet's disease and Crohn's disease" to your doctor(s):
Also, please take a look at the Table of Contents for the latest book on BD -- your local library may be able to get a copy for you: bit.ly/1vgpeNM It might help answer a lot of your questions (even ones you don't know you have yet!)
Dear Jezis , thank you for your reply and information for Bethb. I have been having intestinal issues was told it was pancreatitis took a full course of antibiotic treatment with not much improvement . I have suffered from intestinal problems since a c-section 25 yrs ago. I now know I had beginning symptoms of BD at that time. I have been on treatment for BD for less than a year now and seeing a rumatologist and an opthamologist, I have yet to see a gastroenterologist which after reading your reply that is going to be my next visit. Thank you again Zoie
My daughter has the same symptoms! We are from Costa Rica. In 2012 she had a very bad flare in which she had been hospitalized. Since that crisis she is taking a Biologic (Hummira) and she is doing well right now. But she is also taking Aziathropin, prednisone and colchicine. Actually we are interested in having a medical appointment somewhere to have a second opinion because here in CR her condition is confused between Chron´s or BD. I have read about a Vasculitis Symposium in London next month in which there will be a lot of physicians that maybe can help us. If anybody knows about some specialist in BS and Gastroenterolgy I will appreciate your advice!
Thank you for your reply erssie. I am sorry to hear that you have had so much trouble.
Although I've been feeling pretty ill, I don't think my symptoms are as severe as yours. There was 1 large ulcer right on the ileum valve, and there was some inflammation, redness etc that was just under half was around the outer rim of the ileum valve. To me, the lumin appeared just slightly reduced. I've not had any suggestions that anything might need doing to this. The Gastroenterologist was aware that I was going to be starting with the Infliximab infusions. I've just had my 2nd infusion...and am being monitored before leaving hospital.
My symptoms over the last week seem to have been reduced, but my joint pains seem to have worsened a bit, but not to the worse ever.
With Behcets, I believe all mucosal linings can be affected, including the nasal lining, so I really don't know what that Doctor was talking to you about. I suppose these Doctors have limited knowledge in some areas.
Anyway, thank you again for your reply. I hope you are able to stabilise your symptoms.
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