DMD and Ulcerative Colitis
I was wondering if anyone out there had a child that had been diagnosed with both DMD and Ulcerative Colitis. UC is a colon disease and are supposedly not related; however, my son developed UC earlier this year. I was wondering if there is anyone out there with this same situation and the outcome of it.
Replies to This Discussion
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Permalink Reply by Sharon Good on
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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.
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Permalink Reply by Alisha Ballew on
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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.
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Permalink Reply by Bains on
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Alisha
I am so sorry to hear that you are also having to deal with the ulcerative colitis. I know UC very well and that sometimes steroids don't work for UC. Did they check for food allergies, especially milk...lactose?
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Permalink Reply by Emily on
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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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Permalink Reply by Karen on
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Hi
My name is Karen and my son Erik was diagnosed with UC when he was 11. He takes prednisone which suppresses UC so when it came on it was severe. After 7 weeks in the hospital his colon was removed due to a suspected tear in the colon and he was given an ileostomy. Erik is now 16 and he deals with the ileostomy well. We don't have to deal with transfers to the toilet or constipation. I wouldn't wish this disease on anyone, but it's not the end of the world. If you have any specific questions about dealing with UC and DMD I would be pleased to share our experiences.
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Hey, sorry getting back so late from your message! Thanks for responding. It is good to know trials are active. Brandon is still on 25mg of prednisone with the Remicade, because Remicade wouldn't fix it alone. Actually, even with prednisone it still isn't fixed. At least he's taking a steroid (not my favorite) that will help MD also. Good luck to your husband battling his illness. These things are very frustrating!
Danielle said: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.
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Thank you so much for all the information! I am definitely getting this cookbook; I didn't realize how difficult it is to tame. And I'm glad my son's case isn't the only one out there that is severe and difficult. I hope you are able to keep yours under control. Did you try this cookbook? We are from Dacula, GA, north of Atlanta.
Emily said: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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I am from Virginia and my husband had UC and is totally in control by using homeopathy. I recently wrote a personal story in the www.ccfa.org website. I know it is not believable but Homeopathy worked in our case. He first had his flare up in 2002 and since then no medicine worked including steroids. He was on asacol, colazal, immuno suppressents, steroids for over 2 years and finally by 2004, doctors advised to go for operation. He was very reluctant, so decided to try homeopathy. Initially it got worse since he had to go off on all the medicines, but in 6 months started showing improvement. we stuck with it and by 2005, he was back to work and started living again. He is doing fine ever since and still takes Homeopathy daily. I hope and pray it stays this way and more so since we came to know about my sons DMD last year. So far so good. May god bless you all. - Bain.
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