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has anyone had a small bowel resection after living for years with a pouch?  GI says pouch looks good but have been having other issues in small bowel---strictures, inflammation,  and what seems to be active crohns right above the pouch.  I had surgery last month and was diverted to a loop illiostomy to give everything a rest before next step (resection in 6 months). If all goes well 3 months later hook everything back up.

I had my pouch for 25 years and while it wasn't perfect I loved it.  Surgeon said he can't guarantee he can hook me back up (although he is confident he can) and that life with the ostomy as I have it now is the option that will likely have the best results as far as me not being in pain anymore.  

I want to go through with the two more procedures but would love to hear if anyone else has experience with a resection of small bowel after living with jpouch and if there are any issues/complications I should know about.

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The biggest problem with small bowel resections for Crohn's is that they don't do as much good as most of us like to get from surgery. Sometimes they're just necessary to keep going, but they are more like first aid than definitive treatment, but first aid with all the hassles and risks of surgery. I hope you can find a medication that keeps it under control.

Yeh I've tried lots of meds and been "relatively" ok for a long time.  All of my recent issues(read last two years) are due to pain from what I now believe to be mini blockages due to stricture and narrowing of small bowel behind it.  I was not having the "typical" for me pain associated with active disease, just pain from these blockage episodes even though the surgeon and GI say they did see a few centimeters of active disease just above jpouch.    I knew temp illiostomy was likely when I went in for the exploratory surgery but I was not prepared for a permanent one, at least not yet.  

I want to move forward and attempt to reverse but question if I'm being selfish and vein not wanting to have the permanent bag right now, and moving forward knowing it may not work and the risks involved.  I have a family with two young children and hate that they have to deal with this too.

i should also mention that for 25 years I have not watched what I eat or done anything beyond take the medication prescribed to deal with the disease over the years.  My thought is I have been scared straight and while I know cutting out all my guilty pleasures (candy,spicy foods,alcohol etc.) will not cure me perhaps it can give me a better chance and increase the success of the surgery and my recovery.

lastly if I have the resection and he can't reconnect me am I any worse off?(notwithstanding risk of surgeryitself) If I get the resection he is able to reconnect me and 2,6,12 years down the road I have complications and need a permanent ostomy am I any worse off then now?

sorry for the rant, I just need to vent and feel horrible putting this on friends and family.

 

Briantodd, your upset is completely understandable. It's best to remember that the disease is putting you (and your loved ones in this position). Your diet most likely has nothing to do with it, and this is not a question of vanity. Your pouch is apparently in fine shape, so why not try to get good use out of it?

Crohn's can make a mess of a permanent ileostomy, too. Or it can go quiet and leave you alone forever. I hope it takes the second path. Good luck!

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