Hi everyone.....my son is 13 now but was diagnosed with severe Crohn's at the age of 11. We have tried everything (pentassa, imuran, flagyl, cipro, remicaid, humira, cimzia, prednisone, etc.) and have not really managed to control his symptoms for any length of time. Currently he is still steroid depenedent and we just met with a specialist in LI that has advised us that we can add methotrexate to his current meds and it should have a 60% chance of success....but I am seeing a lot of side effects to this drug that have me worried. Or only other choice at this point is the ileostomy which we are leaning towards. He was on an elemental diet for over 5 months also and he flared then too. Anyone else had the ileostomy???? If so, would you be willing to share your thoughts on this?
Thanks and I hope everyone get releif from whatever ailments you may be experiencing.
I've been on every single one of those drugs and they failed. I waited two years too long to get a colectamy/ileostomy. I'm doing much better now, though still have some issues, but I'm not on my death bed on TPN anymore. I'm glad I did it though sometimes I hate the pouch. I got it right before my wedding! I was diagnosed at 17 and am 24 now. The surgery is no walk in the park... I had complications, but I would hate to see your son loose his youth to pain and hospitalizations when he could be active, eating more freely with an ileostomy. Methotrexate can help some, but I've been on it multiple times and it didn't help. If your son's colon isn't irreparably damaged, perhaps they could leave the colon in, do the ileostomy and give him a few years. Great new drugs like Prochymal (really excited about that one's potential!) are around the corner and he could potentially have his ileostomy reversed someday, with or without a colon to hook-up to!
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