Does anyone know aything about behcet disease. I am ? crohns awaiting endoscopy in October, previous colonoscopy normal. My bowel symptoms have definitnely improved on gluten free and recently scd diet, but Now i keep having facial urticaria sending me to emergency room and steroids, and night sweats. In addition my joints have become really stiff and painful and I am very fatigued. . Because i have a history of genital ulceration with no herpes, my doctor is wondering if it is Behcet's? This seems even more scary than Crohns ..wil the GI am waiting to see know about this condition? Jan
Behcets or Crohns?
- Thread starter Campbell
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Hi
I just posted in another thread.
I was told I had CD then it was taken away finally after 12 years of total hell that saw various doctors in wales suggestion my 'bowel injuries' were as a result of Sexual abuse and not an IBD i finally was diagnosed with Behcets and had it confirmed in the behcet hospital (both london) in 1997.
A lot of doctors assume if Genital ulcers are NOT present behcets can be ruled out.
this is wrong Behcets is being seen more and more with symptoms just like Crohns.Mouth ulcers.severe joint pain and bowel problems.
Im enclosing a link to my blog I do for medical students in london I should advise people its very graphic and shows how the behcets has affected the Rectal Area.
owing to the nature of drug funding here they wont fund 'behcets' but they will fund crohns so stuff like Humira is marked down as crohns because it still causes the same type of symptoms its just the tissue samples come back differently. and theres various tests they can do my brother has 100% Crohns and his HLA's all came back negative for behcets mine all came back as positive.
theres been a massive shift recently in people who suspect they have behcets 3 regional hospitals have been selected to test people.One in london (st barts) one in liverpool and one in Birmingham.
I just posted in another thread.
I was told I had CD then it was taken away finally after 12 years of total hell that saw various doctors in wales suggestion my 'bowel injuries' were as a result of Sexual abuse and not an IBD i finally was diagnosed with Behcets and had it confirmed in the behcet hospital (both london) in 1997.
A lot of doctors assume if Genital ulcers are NOT present behcets can be ruled out.
this is wrong Behcets is being seen more and more with symptoms just like Crohns.Mouth ulcers.severe joint pain and bowel problems.
Im enclosing a link to my blog I do for medical students in london I should advise people its very graphic and shows how the behcets has affected the Rectal Area.
owing to the nature of drug funding here they wont fund 'behcets' but they will fund crohns so stuff like Humira is marked down as crohns because it still causes the same type of symptoms its just the tissue samples come back differently. and theres various tests they can do my brother has 100% Crohns and his HLA's all came back negative for behcets mine all came back as positive.
theres been a massive shift recently in people who suspect they have behcets 3 regional hospitals have been selected to test people.One in london (st barts) one in liverpool and one in Birmingham.
Hi oathy...
Did not get the link...I have been referred to an immunologist...My GI is unsure if it Behcets because I dont have mouth ulcers..but thinks it might be lupas..Im convinced I have some sort of vasculitis...what were your symptoms other than bowel ones??
Jan
Did not get the link...I have been referred to an immunologist...My GI is unsure if it Behcets because I dont have mouth ulcers..but thinks it might be lupas..Im convinced I have some sort of vasculitis...what were your symptoms other than bowel ones??
Jan
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Hi.
Ive got Vasculitis on the scalp.
Ive also got severe problems around the tail end.Bowel symptoms 100% like crohns.Severe pain,bleeding going to the loo loads I even had an Anal Fistula it broke through the bowel wall and waste started coming out of my buttocks
they run a lot of tissue samples and they came back different to what a crohns sample would and they explained to me then the ulcers were more in line with behcets even though they treat it 100% like Crohns in terms of drugs used.
Ive lost most of my teeth owing to the ulcers in my mouth over the last 13 years.also Genital ulcers the joint problems also.In my case because my mums side are romany Gypsy they think ive got the strain of behcets thats normally only seen out in the Far east.More recently ive had 2 issues with the eyes.One losing most of the sight for 48 hrs.that really freaked me out I wasnt brave at all apparently Humira is now used for that issue and the eyes.
I do know recently my doctors diagnosed a lady with Behcets (i met her) and all she had was mouth ulcers and Joint problems.So it looks like a diagnosis of behcets can vary a great deal.I do know they are using blood tests and tissue samples a lot more than they did.
basically the doctors in london asked me to make one so the students that attend the hospital on various days can see some of the pictures they took etc.
http://1.bp.blogspot.com/-5lbVt3MR-Yc/UFYu0zSqjNI/AAAAAAAAABg/77PoBuUo3Lw/s320/DSC07693.JPG
Heres how its affecting my head its been like this for 2 years now im currently on protopic and Elocon cream.
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Hi I just happened on this post. I also have Behcet's disease and have lost most of my teeth as well. I only have 5 left. I also have 8 brain tumor/ lesions that is consistant with Behcet's. I have more rectal than genital ulcers as well. I have also been confirmed to have Crohn's via blood and scope. I am waiting on latest biopsies to come back. If you have any questions please message me.
