Bowel symptoms & Genital Ulcers (please share info)

[rfkkjfk]

Hi, I'm Kathy from USA (Maryland) I have Behcet's full force all the time and many symptoms. My joints have gotten really bad (ankles). Bowels causing me to wear poise and genital ulcers causing a lot of discomfort everyday (burning and stinging). My doctors here are still learning about this disease. I find this site has the best info for me and I print this and take to my doctors. Steroids have been in my system about 5 years daily. A lot of weight gained. Now my eyes are going. I now also have diabetes and everything else you can think of. For the biggest shocker, I need a liver transplant because of Non-alcoholic cirrhosis. I just feel so lucky So I thank you all for your information as it helps me explain to my doctors what I feel.

[Duckiejo]

I am also in the US (Tennessee) so I know what you mean about the doctors' lack of knowledge. Have they tried you on any other medicine besides the steroids? I just wonder if the steroids may be causing some of your problems. I was told years ago when I took steroids for my Hashimotos symptoms that if I took them too long it would cause adrenal insufficiency. Have you tried changing your diet to see if it helps? You may or may not be able to tell a difference considering all that you have going on but I have found eliminating gluten helped with my joint pain in just a few days. I asked my doctor about changing what I eat and if it would help. He just laughed and said 'well, some people may believe that but I don't.' It has definitely made a difference for me and I have the people on this site to thank for that information. I was just diagnosed in January so I'm still learning but I'm sure others on here will be able to help more. Being in the US is frustrating because the doctors just don't know as much. My doctor told me I am his fourth patient with this disease so I feel like I'm his "guinea pig". I take Colchicine and it has helped with the ulcers and the gluten elimination has helped with joint pain. I wish you the best in your journey! Please keep me updated!

[rooser1 in reply to Duckiejo]

I agree. Diet change is what completely turned my life around. I'm anti inflammatory diet here with a keto/ low carb aspect.

[rooser1 in reply to rooser1]

oh usa here too. baltimore md.

[jzeis]

Hi there. I'm in the US (Massachusetts) and I've had BD since 1979. Uveitis and other eye problems were my first -- and worst -- BD symptoms, and it's really important to see a specialist ASAP if you're having vision problems. There's a list of uveitis specialists in the US on the uveitis.org website. If you're not seeing a specialist yet, please choose one and make an appointment. If they say you have to wait a few weeks for an appt, tell them you have Behcet's and your vision is going, and you should get in right away. Here's the list: uveitis.org/patients/list-o...

For anyone in the northeast US (or willing to travel), the American Behcet's Disease Association is holding a Patient Education Program in NJ on Friday evening, May 19th, and a fundraising walk on Saturday morning, May 20th. I'll be there for both (participating on a panel on the 19th) and I'll have a table with Behcet's books for sale on May 20th. You can get more info here: behcets.com/faf/home/defaul...

Hang in there, and I hope you're able to get the treatment you need!!

Joanne Z.

[Dan_NY in reply to jzeis]

I am quite close to this area and am looking into my schedule that weekend. Anyone wishing to come I can try and give some local knowledge if desired.

[rfkkjfk]

Thank you for info. I go April 11 for my eyes, I have had surgery a year ago on them and again now. I have had disease for many years, just never knew what it was til 2012. Been on prednisone and colcyrs since 2012. Now I have seriously bad diabetes along with lots of other things. I have a hard time walking because of the joint swelling in my ankles, but I deal. This disease is very painful. I will like looking into the line of books you have, thank you again.

Kathy K.

[Polarmom99 in reply to rfkkjfk]

Also in the US... Northern VA actually.... my daughter was diagnosed almost 2 years ago now, we have been really happy with her doctor in Vienna who is very familiar with the disease and seems equipped to handle or refer to the appropriate people. Let me know if you would like her info.

[distanttree]

Try not eating dairy and fruit juice.

Dairy and black tea may affect the eyes, concentrated juice may cause rashes and genitals .

Keep food diary.

Remember that doctors originally rejected stem cells for healing. Things evolve and we are the people who can research on our own bodies.

I have a high regard for the medical profession.

[salemsbest1972]

Enbrel has saved me physically and mentally. I try to avoid gluten but I have my days where rice is a must. Gluten free pasta is my best friend and I heart corn chips, organic of course. I try to exercise but I am a very busy mom and work full time in a hospital. I am 45 now but living with this disease since in my twenties undiagnosed. Just diagnosed 3 years ago. One day at a time, it is what it is, if you don't try to help yourself. I take plenty of naps on the weekend, hence why I can't get exercise in. Oh well, one day I will have a routine. Good luck and stay positive.

Kathy Ohio