Behcet's Syndrome Society
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Gastric Ulcers

Hello Fello Suffers,

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 :-)

7 Replies

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.



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Hi BB,

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):

The BSS also has a Fact Sheet on Behcet's and the intestines, here:

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: It might help answer a lot of your questions (even ones you don't know you have yet!)

All the best,

Joanne Z.


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

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Thank you all this information and support.

It's great to know you are here to give further advise/support/information/sympathy /empathy etc



Hi everybody!

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!



I had terrible gut symptoms, with inflammatory bowel problems. I kept getting pancreatitis, and had to have a sphincrerotomy on my Sphincter of Oddi.

I also get pain and problems in lower gut too, and have had obstruction in small intestine, these are quite narrow.

I do get a fair amount of bleeding and diarrhoea and problems eating food. I also have a lot of nausea and would vomit but take cyclizine regularly. I do vomit in my sleep and wake up with lungs floodec and choking. Sphincter at top of stomach is probably not working.

Like you, I underwent various tests under a gastroenterologist. At one time, I was told that it was Chronic Pancreatitis, then probably would be Crohn's disease because of the symptoms I was having. But some results of tests were not in keeping with that apparently but my grandfather did have something extremely similar for decades and was never diagnosed then ended up with cancer of the colon

I was drastically ill, and went from 11 stone in weight down to 5 3/4 stone in weight. At times, I could only tolerate liquids and could not eat solid food especially anything with fats in it. At other times, I could not even tolerate sips of water and became extremely dehydrated and had to go on IV fluids

It was while on various IV treatments and chemotherapy that my veins started to collapse and I suffered from ulcers in legs buttocks and arms with Severe ongoing Nerve damage.

I also used to get symptoms in my eyes that would flareup at exactly the same time ad the gut/bowel/pancreas symptoms.

Some people have suggested that perhaps Behcets occurs in the supply of blood vessels to nerves that control the digestive system could be the cause of my bowel symptoms as well as Causing motility problems and problems in my sphincters opening and closing as those are just rings of muscle with blood and nerves supplying them.

Anyway, whatever the disease I have is called ( Pancreatitis, Behcets, Crohn's or just IBD or IBS), all I know is that the symptoms are the same whatever anybody decides to call it. Knowing what it is called is a huge desire in the undiagnosed, but if you do get diagnosed usually treatment of symptoms is similar despite being different diseases. I gave up trying to find a unifying diagnosis that fits everything that I have. I now choose to visit my GP and treat each of my symptoms separately as and when they occur.

I found some doctors are very comfortable using Behcet's disease as the umbrella for all of the symptoms that I have. Those doctors are not interested in pursuing any more tests because they realise that treatment might be the same Whatever it is and it is safest to assume BD is the Underlying cause.

I find some doctors treat me for the symptoms they believe fits under Behcet's but then want to brush off or ignore the other symptoms don't fit and not accept any of them. I grt nasalvulcers and bleeding, the doc s said There is no way that can be connected Behcet's disease as that is Only mouth ulcers.

Sometimes, because I have so many things wrong with me, I am treated as if I am oddity or peculiarity that does not fit into there known medical framework. All I know is that what is happening to me is Always Familiar to me and has a pattern I understand but cannot communicate and it is not at all odd,, and fairly consistent for my history.

I have had gut symptoms since I was a child and I am now 50. I have learned which things trigger my symptoms for example food, stress, climate and lack of sleep, pain from the rest of my body.

Doctors may say there is no scientific reason why I can't eat Certain foods but I will find from repeatedly experimenting that a particular substance is just not going to be tolerated whatever the reason So I don't eat it.

You said you had problems with the valve in your ileum. Is this a sphincter problem? And did you have to have a sphincterotomy like me to allow things to pass through unblocked?

If so, there are a huge number of factors which affect sphincter opening and closing pressure. As well as certain foods affecting the problem there are drugs which need to be avoided if you have sphincter problems. Any drug which is opiate based will make the gut slower and Sphincters close up or just be non-responsive. I am also on a drug for nerve pain called lyrica or pregabalin and I am certain that slows things down with the gut.

I have also developed anal tags and semi parylysed anal Sphincter. Apparently the tag is quite common in Crohn's disease. I think mine is caused by damage from equipment to wipe my bottom because my arms and out to short to reach. I also gets quite a lot of leaking and lack of control in that area. I often have bladder leakage as well as bowel leakage and have to wear pads.

You will probably find that many people with Behcet's disease have got a range of gut or bowel symptoms but a lot of them like me have been advised that it is not related outside of their diagnosis.

I am not a medical person, but to me it would make sense if Behcet's caused ulcers on mucosal lining of mouth or vagina, that it could also cause it on a similar mucosal lining of the gut.

I too am suffering from joint pain, uropathy in Lake shoulders arms hands and feet. When my bowels play up, my pupils become extremely dilated and fixed. I am told that the muscle in the eye is also a sphincter and can be affected by the Sympathetic nervous system Which is also supplies the gut.

I get headaches to sometimes those headaches due to dehydration and treatment because I have diabetes insipidus which means my pituitary gland Isn't working properly.


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.

Best Wishes, BethB.


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