Do extra intestinal manifestion's go away with jpouch removal?
yes - 0.0% - 0 votes
no - 100.0% - 1 votes
Posted 10/10/2018 8:49 PM (GMT 0)
I'm one of the lucky ones who underwent the 3 stage surgery for the jpouch. It's been 2 years after take down and my life has been miserable. I have the typical ankle, leg, knees and pain in my right flank on my back. I go to the bathroom 15 to 20 times a day. I've tried all diets, SCD, and low fod map and nothing works. I'm considering removal of the pouch and going to a permanent bag. My question is will this remove the extra intestinal manifestations also?
SunniPops
New Member
Joined : Oct 2018
Posts : 3
Posted 10/18/2018 9:30 PM (GMT 0)
Hi sorry to hear you’re having a terrible time. I have/had dual diagnosis Crohns/UC have a perm ileostomy for 17yrs and was offered J pooch a long time ago. However UC still attached to last piece left behind and reattachment would have caused lots of problems. Have also had a total proctectomy too some 10 yrs ago. I have known a couple
Of people to have had the same surgery as you and still having lots of issues and pain. Only you can decide what’s best for you, but having to be near the loo all day, is no life. There’s always pros and cons, but after making the decision, I’ve found I’m not constantly having problems with pain, diarrhoea, sickness and constantly worrying about going anywhere. I now eat whatever I want, it takes time to chew and obviously you avoid things that don’t digest well. Psychologically it takes a lot longer to deal with the changes, but I’m here and living my life to the best I can. You can too, relatively painfree, but better then you are now.
I have arthritis caused by the Crohn’s disease and these are my normal battles at this moment in time, just a degenerative part of this rotten disease. Hope things work out for you x
Posted 10/18/2018 9:54 PM (GMT 0)
Unfortunately there isn't a definitive answer. Some people with UC who have surgery have said their EIMs have gone away after surgery, but others have had ongoing problems even after surgery.
I'm actually in a fairly similar situation to you, except I still have my original rectum and not a j-pouch - but the rest of my colon has gone. I don't go as many times a day as you do, but the urgency, abdominal pain and EIMs are all wearing on my nerves. I would go back to having a stoma tomorrow, if just the uveitis alone was guaranteed to disappear. But as it stands, I'm not ready to make that decision (that is partly because of uncertainty about future medical supplies, presumably a worry you don't have).
I'm sorry I can't help you to come to a decision. But I do think I'd rather have a stoma than be going 15-20x a day. You're likely to feel better within yourself if you get rid of the existing disease too, even if the joint pain doesn't disappear. PS: This may be obvious, but rule out any small bowel disease thoroughly first before deciding on reversal surgery.