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Total colectomy and perm illeostomy after liver transplant, anyone?

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Posted 1/23/2015 5:46 PM (GMT 0)
Hello. New here. I had a liver transplant in Oct. of 2013, due to PSC, and have been in a very stubborn UC flare since March of 2014. My old faithful Asacol (which controlled my UC for over 20 years) could not cut it this time. I tried Lialda, Uceris and Remicade. I just got out of the hospital this past Monday after treatment for dehydration and c-diff. I am still flaring badly, as they did not want to give me pred while having c-diff.

I already know I want surgery and have to wait until Feb 10th for my consult (wish it was sooner). Has anyone who has had a similar situation to mine (ie-liver tx) had colectomy and perm illeo or j-pouch? Where did they place your stoma in relation to your tx scar? Did you go for j-pouch or perm illeo? Extra concerns with being already immunosuppressed for anti-rejection? Any stories/advice appreciated. :-)
Posted 1/24/2015 11:04 PM (GMT 0)
I don't know about the liver transplant, but good luck! I wish more people had personal experience to share withj you. I suppose going with the best surgeon possible, who's fully aware of your past health issues. I personally have a perm ileo, & have been entirely pleased with the way it functions. Sure, sometimes I hate it, just the fact that I have it. But it's much better than living with UC.
Posted 1/25/2015 12:20 AM (GMT 0)
Thanks, Eva Lou. I know the title of my post kind of narrowed the audience quite a bit. :) , but was still surprised to not have a single response. It sure looks like you tried everything but the kitchen sink for your UC! I tried lots of diet modifications also, including trying the SCD very seriously, twice. I have eaten 90% paleo for a good while now, and hope to continue eating that way once my system is ready to handle it. It's good to hear that your perm illeo works well. I'm sure I will have more questions for this forum in the future. Thanks again for your post.
Posted 1/25/2015 4:15 AM (GMT 0)
I have PSC after having UC. Had colectomy and J-pouch surgery 13 years ago. Best thing I ever did!! Normal life, just have to watch what I eat so that I do not get a blockage. How long did you have PSC before surgery?
Posted 1/25/2015 2:07 PM (GMT 0)
Westy, I was diagnosed with PSC 15 years prior to transplant. They found it through normal followup after I had my gall bladder removed. I know the j-pouch is an option. I'm just not sure I want to risk all the complications. If I were fairly new to UC, and had not been through the wringer so much with PSC and a liver transplant, I would probably try it.

Just the thought of recovering from another huge abdominal surgery exhausts me, ha. They will not be able to do it laproscopically, so it will be another huge incision. Wheeeee!

I'm glad things are going well with your j-pouch. I don't know if you are having trouble with your PSC yet, but there is a good facebook group that I belong to that is very supportive and has a lot of people with experience and advice. You might check it out if you are interested.
Posted 1/26/2015 5:06 PM (GMT 0)
K-del,

I really liked my end ileo, it was easy to maintain and to live with. I have a j-pouch now and I like having it more so then the end-ileo but I could definitely live with the end-ileo. Which ever surgery you decide on it will still be better than living with UC.

There aren't too many people with both a liver transplant and a j-pouch but there are some. You might be able to find some at j-pouch.org.

Since you are on immuno-surpressents your pouch would probably function pretty well since the immuno-surpressents would treat most pouchitis if that ever became an issue for you.

I had my surgery done open because of predisone, I don't think it took me any longer to heal then other people who had it laproscopically. I do have a nice scar because of it; my insurance will pay for plastic surgery for a scar revision but I haven't booked it yet because I'm not ready for another surgery just yet.
Posted 1/27/2015 5:35 PM (GMT 0)
Thanks for the post, ks1905. :) I'm glad you like your j pouch. I flip flop back and forth in my mind about whether to go perm illeo or pouch. I read about pouch complications that last for years for some people, requiring more surgeries, drugs etc., and I think: No Way am I signing up for that! Then I read success stories and think the opposite, ha.

I have lurked on j-pouch.org, but have not posted there yet. I shall have to do that.
Meanwhile, the flip flopping continues...
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