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major scar tissue in rectum?

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Posted 6/26/2014 1:23 AM (GMT 0)
Hello, wondering if there is anyone else that has rectal pain/spasms from j pouch surgery? Have had j pouch 7 years, now have chrohns, started with colitis. Have had many issues since. Develoed fistulas now have 3 Seton's,developed scare tissue (maybe?) Do not know who to beleive! Does any Dr really know? Now I have constant pain back/down there. Ended up in E.R few months back,prescribed cipro it helps, but does not take care of all. Also take about 3-4 hydrocodone, also helps but short term, have been taking those for about 6 years. Dr's had said only option is going to the bag. I have no life! Unable to work and husband is so over it. So am I! Is there anyone else who has or is going thru this? Any advice would be appreciated!!! Thank you
Posted 6/26/2014 1:31 AM (GMT 0)
Have you tried any biologicals?

I'd also try to find a surgeon who specializes in Crohns surgery. The surgeon that I had build my J-pouch really focuses on Crohns patients, he even has a procedure named after that saves more of the intestines of Crohns surgery patients.

Or get a seconded opinion from a GI that specializes in IBDs
Posted 6/26/2014 5:08 AM (GMT 0)
The bag gave me my life back. There is no pain like rectal pain.. I wish I had gotten the bag like 10 years sooner. It could have saved many years of pain and agony. I love my ileostomy and would never go back to trying to use my rectum.
Posted 6/26/2014 1:03 PM (GMT 0)
I think with the number of problems you have related to Crohn's activity in the area, a permanent ileostomy would give you your life back.

Sue
Posted 6/27/2014 5:39 AM (GMT 0)
have you met with a jpouch guru doctor. there are lots of options but I don't believe most docs are educated enough
Posted 6/27/2014 8:31 PM (GMT 0)
Thank you so much for the responses! It feels so good to have replies back! My 1st time having feedback. I had supposedly met with one of the best GI's. Who I felt gave me very little time with him. Just said have surgery and no more problems? That is what o thought when I had the j pouch placed. I just can not believe that there is nothing that can be done for scar tissue/pain. Any suggestion? I can deal with the nasty Seton's but not the rectal pain any longer. Also, is there anyone that has stool coming thru vagina due to j pouch? Is that normal? You would think I would know all this after 6 years but I am so tired and have no one to turn to. So glad to have this forum and to have found people going or have gone thru similar situations!
Posted 6/27/2014 9:23 PM (GMT 0)
If your diagnosis was UC your outcome would be better, your surgeon was correct on that point. I understand your frustration but with your diagnosis of Crohn's and your continuing problems; I'm not sure you can salvage your jpouch and have a good quality of life. Stool coming out of your vagina is the sign of an active fistula, it's not normal and they are notoriously difficult to repair. Some people are just prone to developing scar tissue and have a terrible time managing the pain it causes. That can happen with anyone, IBD, or not that has surgery. I wish I had more encouragement to offer.

Sue
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