how good is surgey for uc

hi iv had uc for 3/4 years now and its not going away.. i keep it under control by using sTeroids when i have flare ups but dont want to keep doing this forever. have thought of surgery but dont know alot about it... any one help?

Post Edited (spark51) : 4/21/2010 8:42:39 PM (GMT-6)

Hi and Welcome,

My 18 yr old son battled UC for almost three years. Had three major flares and every time pred worked less and less well. He tried Remicade but ended up making antibodies against it. He was very sick and decided that he wanted to get control of his life back and we were all worried about the thought of using heavy hitting drugs for decades and decades and then possibly needing surgery anyway.

Last Sept he had his colon removed and the decision was made to have a J pouch built in the three step method. This meant that since he was so sick (as well as having been on pred for a while which makes you not heal as well) the surgeon only wanted to remove his colon and then allow his body time to heal before building the pouch. And that it did....within days of surgery you could see the health returning to his body. about a month later he had more energy than he could remember and felt great. Between these surgeries he had an end ileostomy which he learned to deal with very easily. It was actually much less of a deal than he had feared. The first of Jan he had his pouch built and was given a loop ileostomy while the pouch healed. 8 weeks later he had the ileostomy closed off and the pouch started to work. He is now 2 months post "reversal" (which is this last surgery of closing off the ileostomy) and he is doing GREAT. He is completely healthy, has more energy than he knows what to do with and is living life as a teenager should.

I do not want to make light of these surgeries. They are major surgery and have a fairly high complication rate (of which almost all can be dealt with). However, for us it was absolutely the right decision. My son had more than his share of complications, when added up was hospitalized for over 2 months but would do it all again in a heart beat.

It is great that you are starting to ask questions and you should make an appointment with the very best colorectal surgeon that you have accessibility to. There are a lot of judgement calls that need to be made during these surgeries and during their recovery and you want to be under the care of someone who has done hundreds of these. Make a list of all your questions and make sure that you get all your answers.

I wish you all the best....this is a tough decision to make. If you have any questions we are always happy to detail our journey.

Cathy (and Dillon)

I had my ileostomy surgery when I was 10 years old (34 years ago). It was the best decision my parents ever made for me and no amount of money in the world would make me give it up and go back to my UC days!

Can you tell us what medicines you have tried? If you aren't sure if you're absolutely ready for surgery yet, we might be able to suggest some other medical options.

That said, however, I'll most definitely have surgery if the meds aren't working and I'm in a constant flare. It's just not worth it to suffer, IMO, when most people who have a colectomy for UC are so happy they did.