# Colitis surgery **URL:** \ **Category:** Life with Primary Sclerosing Cholangitis\ **Created:** [July 19, 2014, 7:47pm UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401 "2014-07-19T19:47:33Z")\ **Posts on this page:** 8\ **Page:** 1
**Author:** ![Aodhan](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/aodhan/32/179_2.png) [@Aodhan](https://forum.livingwithpsc.org/u/Aodhan)\ **Post date:** [July 19, 2014, 7:47pm UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/1 "2014-07-19T19:47:33Z")
Just wondering if any of you has had this surgery for colitis ‘restorative proctocolectomy’? And if so, would you recommend it? How does PSC react to the surgery? Thanks. ---
**Author:** ![JeffDC1](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/jeffdc1/32/402_2.png) [@JeffDC1](https://forum.livingwithpsc.org/u/JeffDC1)\ **Post date:** [July 21, 2014, 1:19am UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/2 "2014-07-21T01:19:35Z")
I had my large intestine removed in Dec. 2006, and the jpouch hooked up in April 2007. While it is no a perfect cure for colitis, it beats having colitis. It takes a lot of getting used to. With the your question of PSC reacting to the surgery, I believe I did not have PSC at the time. So I can't help you there. Try going to j-pouch.org. I know that there are some active participants that have PSC. Jeff ---
**Author:** ![Aodhan](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/aodhan/32/179_2.png) [@Aodhan](https://forum.livingwithpsc.org/u/Aodhan)\ **Post date:** [August 3, 2014, 8:17pm UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/3 "2014-08-03T20:17:05Z")
I will do Jeff, thanks. ---
**Author:** ![Mats](https://avatars.discourse-cdn.com/v4/letter/m/b4bc9f/32.png) [@Mats](https://forum.livingwithpsc.org/u/Mats)\ **Post date:** [September 7, 2014, 8:08pm UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/4 "2014-09-07T20:08:09Z")
I have a pouch (think it is a J, but could be S!), since 1994, and am happy with it. Have some problems with pouchitis since 2008, but must say it is manageable. Would go for the pouch again, if I was sent back to 1994 (had a bag for 18 months, so I have tried both). Also know it does not work for everyone, and that some still consider an ileostomy a safer bet, since you may end up with one anyway. My PSC diagnosis was only a couple of years ago, so like the others I must say that I have no idea how it affects the liver. ---
**Author:** ![Kenyan-Boy](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/kenyan-boy/32/750_2.png) [@Kenyan-Boy](https://forum.livingwithpsc.org/u/Kenyan-Boy)\ **Post date:** [September 8, 2014, 10:44am UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/5 "2014-09-08T10:44:15Z")
Hi Aodhan, I am also interested in your finding because we are in the same boat, though I am not up for any surgery I know I will in the near future. All the best ---
**Author:** ![ferretlove](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/ferretlove/32/767_2.png) [@ferretlove](https://forum.livingwithpsc.org/u/ferretlove)\ **Post date:** [September 14, 2014, 12:26pm UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/6 "2014-09-14T12:26:53Z")
Hi JeffDC They link IBD with PSC but there is no clear idea of how it happens. Lucky us. JeffDC said: > I had my large intestine removed in Dec. 2006, and the jpouch hooked up in April 2007. While it is no a perfect cure for colitis, it beats having colitis. It takes a lot of getting used to. > > With the your question of PSC reacting to the surgery, I believe I did not have PSC at the time. So I can't help you there. > > Try going to j-pouch.org. I know that there are some active participants that have PSC. > > Jeff ---
**Author:** ![Aodhan](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/aodhan/32/179_2.png) [@Aodhan](https://forum.livingwithpsc.org/u/Aodhan)\ **Post date:** [September 14, 2014, 8:20pm UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/7 "2014-09-14T20:20:13Z")
Thanks all for getting back to me, I have been meaning to get reply but have just been so busy lately (thanks to my steroids I may add). Originally I was to have a restorative colectomy but a meeting with my surgeon a few weeks ago, I have been informed that if getting a 'pouch' wouldn't be advisable with having PSC. Too many complications at a higher rate than those that don't have PSC,including frequent pouchitis, infections etc So this news has thrown a spanner in the works for me because I definitely didn't intend in having a total colectomy and stoma tbh. My consultant has put me on Prednisolone to give me some sort of control over my life until I make a decision on whether to go for the surgery. I am 80/90% decided that I will probably have surgery come January. Stephen I am quite asymptomatic, I think. I sometimes think that my PSC is annoying my colitis. I would also have very bad brain fog (though this improves when I am on my steroids, my life enhancer). I'm still not 100% sure that I even have PSC. My doctor doesn't want to do tests on me because he doesn't want to put me through the stress of it. Thanks all for getting back to me. ---
**Author:** ![Aodhan](https://sea1.discourse-cdn.com/flex019/user_avatar/forum.livingwithpsc.org/aodhan/32/179_2.png) [@Aodhan](https://forum.livingwithpsc.org/u/Aodhan)\ **Post date:** [September 26, 2014, 8:48pm UTC](https://forum.livingwithpsc.org/t/colitis-surgery/401/8 "2014-09-26T20:48:32Z")
Stephen, I have had colitis since I was 16 but have been nearly steroid dependent this five years. You mentioning colon cancer echoes what my surgeon told me. He recommended surgery purely on the basis on my risks of getting some form of cancer, let it be colon, liver, pancreatic and some other one which I forget. I am in such a dilemma! I have had to give up things which I love, my football, cycling and even my chainsaw, nothing I love more than going to get blocks for the fire but I am just not fit for it. Has your colectomy had any ill effects on your PSC? A colectomy to me seems so final but as you say, a choice has to be made.