Ulcerative Colitis
Sat, April 11, 2009 8:49 PM
My son, 19, was diagonosed last year. He was put on Lialda and it worked fine for about 11 months. Then he had a flair up and they put him on Azathioprine in addition to the Lialda. That worked for about a month and another flair up. Then he was put on steroids for 2 weeks to zap it. We were told if the steroids don't work, then he would have to start transfusions in the doctor's office. Could anyone tell me if they have tried any other medicine that worked for them. I have just found a support group and will be attending my first meeting at the end of the month. I am hoping to learn more about UC and how I might be able to help my son. In the meantime I would appreciate any advice.
jvcJoined Apr 5, 2009
Tue, May 19, 2009 12:00 AM
Reply posted for JVC.
Hello,
My son is 25 and he was diagnosed Feb 2006. He initially went thru the Prednisone and Asacol, Lialda,( and others I can't remember!) and at one point early on, tried Immuran (which he was allergic to). His case is very severe and the Doctor offered him Remicade infusions. He went for Remicade infusions from Jan 2007 to Jan 2008. He had them every 7 weeks and it was like giving him his life back! He was living normally. The only side effects he had were really sensitive to pollen! So his allergies developed but a claritin every day took care of that. In January, he began to flare again...he was very sick for 3 months..For him the Remicade stopped working...but again he has a Very severe case and is having to look at surgery now. There are people who have been taking the Remicade for 5 years and are living normally..so your son may do just fine! At their young ages even though there are risks involved, the possibility of the Remicade letting them avoid surgery for years to come until they have gotten through school, gotten a job and some stability in their lives we felt the risk was worth it. In my sons case, he had to drop out of school and eventually got a part time job. Hopefully your son will get much further!! I wish you and your son all the best.
Karen
Joined Feb 13, 2009
Wed, May 06, 2009 12:00 AM
Reply posted for JVC.
Hi,
One thing that my 17 year old son has learned is that he cannot drink caffeinated beverages.
Diane
diane22Joined May 6, 2009
Sat, April 11, 2009 10:38 PM
Reply posted for JVC.
My 18 year old daughter was diagnosed with UC two years ago. She is on 4 Lialda, 3 1/2 Azathioprine. She had a flare up (she was on 2 Lialda but it was upped to 4 because of the flare up) when she started college in August and it lasted 4 months. She was seeing a pediatric IBD specialist in Los Angeles. She tried adding on Canasa, 2 rounds of Flagyl, Cortifoam but she still had blood, mucus, and diaherra. She was suggesting that my daughter go on Remicade or Humira. I did not want that. I remember the doc telling me that probiotics were great but didn't suggest a certain one. I finally just went to Whole Foods and asked someone in the vitamin section which probiotic my daughter should take and told the person she has UC and her symptoms. They suggested Ultimate Flora Critical Care 50 Billion. It worked for my daughter within a few days. I also made an appointment with an adult IBD specialist in the same facility in LA. We went and told him what my daughter was on and the supplements (she also takes one Women's One a Day besides the meds and probiotic), he said lots of UC patients have "bacteria overgrowth" and that is the probiotic he tells his UC patients to take and has suggested that one for over 10 years. He wants her to take a Lactulose Hydrogen Breath Test but she'd have to stop the probiotic and she won't do it. She also took a CT Enterography and is having another colonoscopy April 22. She is also watching her diet: no added sugars and processed foods. She is doing great and now wonders why she's on Lialda and Azathioprine. My daughter was on acne medicine for almost 3 years and as soon as we stopped it she developed UC with a week. It just all makes so much sense with the bacteria overgrowth. I'd suggested trying the probiotic. I hope it would work like it does for my daughter.
Joined Nov 9, 2008
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