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I haven't heard of other boys with any of the inflammatory bowel diseases ( colitis, crohn's ). However many of the boys do present with chronic constipation, and many are lactose/dairy intolerant.
Unfortunately boys with DMD are not immune from other conditions as well. Is you son on steroids? as steroids are often used to treat UC as well.
I have a friend who has UC, I know how frustrating it can be! My husband takes enbrel which is in the same class of drug as remicade. They are considered anti-inflamatory drugs. They turn off your white blood cells.He has Ankylosing Spondlitis which is an inflammatory disease of the joints. Funny thing is that UC is basically the same disease except that the immunine system attacks the bowls instead of the joints. It is not unusual for people being affected by both. I may be wrong but I vaguely remember reading something that there might be a trial to see if a drug like remicade or enbrel might take the place of steroids for our boys. They have less side effects. So maybe it’s a blessing in disguise :)
Is your son still on steroids?
Alisha Ballew said:Brandon was on Deflazacort and still got a severe case of UC. They tried putting him on Prednisone instead (up to 40mg) to no avail. He had to eventually have two blood transfusions from such a large loss of blood. We finally had to put him on Remicade (an IV drug; the strongest medicine you can take for this). They started him on the lowest dose and it came back. So we are awaiting our next visit to receive a stronger dose of Remicade. I just worry that down the road this strong medicine will affect his heart or any related MD issues.
Sharon Good said:I haven't heard of other boys with any of the inflammatory bowel diseases ( colitis, crohn's ). However many of the boys do present with chronic constipation, and many are lactose/dairy intolerant.
Unfortunately boys with DMD are not immune from other conditions as well. Is you son on steroids? as steroids are often used to treat UC as well.
Hey Alisha. I am Emily Gregory and my son is Beau. He is 3 1/2 and has DMD. He does not have UC, but I do. Beau was diagnosed last fall with DMD. The stress of it all flared my colitis up so bad that I had fever for 27 days. We didn't know what was wrong with me until finally a colonoscopy revealed it was colitis. I have had such a time trying to go into remission. We live in Birmingham and I may try a clinical trial at UAB. I think the name of the drug is abatacept (not sure if I spelled it right). It is a newer drug that a lot of patients have had success with when remicade doesn't work. I don't think abatacept is any stronger, it is just a good replacement for remicade. It is still in the trial stage because of the expense. I am now taking remicade and have had some success with it, but just can't get all the way well. We have increased it to 10 mg now every 5 weeks, so hopefully that will work.
I am so sorry about your son having this. It is such a nuisance! How is he doing? I know you and your son have enough to deal with and now dealing with colitis. Oh, I am just so sorry for him.
I will say that I am also thinking about going to a holistic (health and wellness- I think is what it is called) doctor. I have a friend who is around 40 and she has been battling colitis, too. She was taking 13 pills a day and not going into remission. She went to see this doctor. He put her on a very strict diet for about 3 months. After that, she slowly began to add things back to her diet and quickly discovered what she couldn't tolerate. I think one of the foods was soy. Now, she and the doctor together have formed a diet plan where she avoids the foods that mess her up. She is completely off of all medication now and in remission.
There is also a book (you may already know about it) written by Elaine Gothschall (I think) called Breaking the Viscious Cycle. Her daughter had colitis at a very early age and couldn't get well, so she created this diet for her. It was obviously a success, so she wrote a book about it. There is a small business somewhere that makes some of the special food for the diet (yogurt, etc.) that you can order. She may refer to it in her book. If she doesn't, I can find the phone number for you. I have a friend-of-a-friend who has been on this diet for the last year and is in remission. After a year, you can begin to taper off the diet.
I know that colitis can be hereditary. I have wondered if Beau would be my child to come down with it....I wasn't sure if his DMD would make him more susceptible to having it. But you do say they are not related.
Please let me know if I can help in any way. Where are ya'll from?
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