# My 12 Y.O. facing surgery for U.C., Please Help!!!



## Tom1680 (Feb 2, 2003)

My first post. My 12 Y.O. daughter is hospitalized now. Her second admission since around X-Mas. Her Ped GI is pushing the surgery option to follow with pouch anastomosis. Currently being treated with IV Prednisone and antibiotic without dramatic improvement for past several days. Surgeons and adult GI's reluctant to move to fast. If no improvments soon, only other option presented other than surgery is use of immunosuppressant agents. In particular, Cyclosporine which is typically used for transplant patients to shut down immune system. This drug however, has significant side effects according to docs. Cyclosporine would be used to bridge the gap to Imuran and/or 6-mp. These are also immunosuppressants that take 3-6 months to take effect, however, are less toxic than Cyclosporine. Cyclosporine is likely to work quickly, however, docs indicate 50% of patients end up having surgery within a year anyway.My daughter was diagnosed at 9 with left sided. Did relatively well until recently on Asacol, cortifoam and occasionaly oral Prednisone. I am 41 and have had UC since I was 15 y.o. However, have not had a flare up in over 10 years. Would have loved this forum back in the 70's. Isolated all those years. I'm beside myself. I know her pain but am so reluctant to consider surgery. It sounds like pouchitis is simply UC in a Pouch. The docs claim 90% success rate with procedure. Is there any information anywhere that can help us with this decision? Are UC patients happy with the outcome. I've looked through most of the BB's and have not found anyone discussing there satisfaction or dissatisfaction. Can anyone point me in the right direction? Thanks so much.Feel free to e-mail me at tlaur###superior.net


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## M.Beth (Apr 1, 2002)

Sorry to hear about your daughters situation. I have never heard of any of the treatments you have described, but as a parent can imagine what you feel right now. I noticed in you message that your daughter was on asocol. My 16 year old has been treated for about 9 months for IBS, however, on our last visit treatment began for UC. I am not ready for that diagnosis and he is to begin the use of asocal tomorrow. I'm having difficutly giving him any more meds. Any info. you could share on the drug would be appreciated. Thanks and God Bless,MB


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## Tom1680 (Feb 2, 2003)

Hi MB,Asacol is a maintenance drug for UC patients. It is taken to help prevent flare ups. This is my understanding. However, you may want to visit the Crohns and Colitis foundation site. It has alot of easy to read info. I'll give you a link to the colitis index. Check out the section on Medications. This will explain the various drugs currently in use. There is also guides for parents, child and teachers. Here is the link: http://www.ccfa.org/ucindex.htm I wish the best for you and your son.


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## KatieCC (Aug 27, 2002)

MB-if you're not sure about his diagnosis, get a second opinion, a third opinion, so on. Don't let him be treated for UC and then find out his problem is IBS. UC is a whole other ball of wax, it's treatment involves lots of nasty drugs, and if he really has IBS and not UC, he'll be getting lots of nasty-drug-side effects and the drugs will not be helping his problem at all because they'll be treating something he doesn't have.Please don't let him take UC drugs if you feel the doctors aren't sure of his diagnosis. Asacol is the least harmful of all drugs given for UC, most people don't have side effects but some people have severe adverse reactions to it. Me personally, it made my hair fall out. And after asacol they give powerful steroids, immunesupressants, chemo drugs, $6,000 infusions of genetically engineered rat proteins (aka remicade). Read up on the subject, and definitely get a second opinion if you feel his diagnosis of UC is incorrect.Kate


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