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Ulcerative Colitis
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Posted 3/30/2009 1:36 AM (GMT 0)
My son was diagnosed with UC a year ago, the past few months it became active again. We have been doing medical therapy, but he has had a lot of bad reactions to the meds. We started imuran and he had a bad allergic reation with that. So doctors says we have 2 options left, which would be 1, starting remicade and 2, surgery. My question is has any had this surgery and how is that working, 2, with him having allergic reaction to imuran wouldn't he have the same with remicade, or is it different.
Posted 3/30/2009 1:51 AM (GMT 0)
I haven't had any surgery and I haven't had any reaction to the Imuran. But, there is another choice that the doctor didn't mention. If your son has a bad reaction to the Remicade which I did, he can also try Humira. Humira is a miracle drug. That helped put me into remission. Remicade is a good drug to lean toward, along with Humira.
Posted 3/30/2009 2:29 AM (GMT 0)

I had jpouch surgery 8 years ago due to refractive UC.  All drugs failed me.  I consider surgery to be the best decision I made regarding my health.  I am healthy, med-free, and no longer live with the cycles of illness.  I am a hiker and backpacker and can engage in those activities at will.  Surgery is not without compromise as living without a colon is not perfect but I found that the compromises for me are mangeable.  If your son opts for jpouch surgery find one of the best CR surgeons you can.  I encourage you also to go to www.j-pouch.org for support and advice.

Sue

Posted 3/30/2009 2:30 AM (GMT 0)
So sorry to hear that your son is allergic to the meds he has tried. Could you let us know what exactly he has tried and how sick he is? I find the idea of jumping to surgery after only a year since diagnosis very alarming. It took years for me and my doctors to find a good mix of medicines to keep me in remission. I had bad months and good months for years but no one every suggested surgery and I went to some of the best doctors in two major cities. Obviously, everyone is different and I don't know the whole story and I'm not a doctor, but I am just wondering whether your son's doctor hasn't prematurely decided there are only two options left.

Personally, before going through surgery, I would want to exhaust every option, including non-Western medicine,, as well as get second and third medical opinions from other doctors.

I hope your son is dealing ok with all of this. It's a lot to handle!
Posted 3/30/2009 3:08 AM (GMT 0)
I had an aggessive case of UC that left me steriod dependent.  Like your son, I had a bad reaction to imuran and also 6mp.  I opt'd to not even try remicade due to my reaction to the other meds and I opt'd for surgery.  They ended up doing 3 step j pouch and my last surgery was 12 weeks ago.  I am glad I did it....no meds but certainly an adjustment.  I really got tired of being sick all the time and in and out of hospital with flares...I was always in a flare.  Looking back, I realize that the quality of life was not very good at all...I never felt good.  I did, however, feel that I exhausted all options.  I did special diet, homeopathic, reduced stress/work schedule and did try imuran and 6 mp (both twice) eventhough both were scary for me.  I am happy with my decision to get rid of my colon but it has been alot of work.

Posted 3/30/2009 5:15 AM (GMT 0)
Just want to say wish I knew about this site sooner, and I'm so thankful for all the replies they are so very comforting and helpful. My son, who is now 17, started with Asacol, Prilosec, and steroids. I lost my job so there went my insurance. So had to change his asacol because I couldn't afford it, so they put him on the old version of treating this with a sulfa drug. Which he is allergic to sulfa drugs come to find out. Then we had to switch back to the asacol, which now I have insurance, thank god. He's been on entocort, allergic. Imuran, allergic. Since his first colonoscopy the colitis has gotten so severe that we had to jump to the more stronger medication because of the severity. His doctor to me has been wonderful, very considerate, and always there when we need him no matter what day of the week or time, he did suggest to me about getting a second opinion if I would like. With my sons history of being so sensitive to medications and the severity of his UC that the remicade and or surgery was our last options. My son to me is handling this better than me I feel, he is my hero. We have such a good connection, so I feel he is doing fine, well as best as you can with this. Plus are family, school, and his work have just been wonderfully helpful. He talks very open with me, and he really wants to just have the surgery. He new more about it than I. The remicade solution just seems to me to be not worth it because of his reaction to the imuran which the two seem to have so much in common, as of the side affects. We go talk with the surgeon about the remicade on monday, the 30th. I will ask about that other med, Humira, and see what he says about that. Thanks again :-)
Posted 3/30/2009 3:39 PM (GMT 0)
You should also mention antibiotics. They have seemed to help my husband's quality of life (they are not usually cure). All of our best to you and your son.
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