Failed J-Pouch-Temp Ostomy?

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EdCarCait08
New Member


Date Joined Jun 2009
Total Posts : 1
   Posted 7/6/2011 12:18 PM (GMT -6)   
Hi everyone! I am new to this site so please bear with me!! I had a total colectomy years ago for what we thought was UC. I had a bag for a few months while I waited for the J-Pouch to heal. Later on we found out I really had Crohn's Disease and that it really likes the J-Pouch. For the past few years, I have had the same constant symptoms of abdominal pain (in the same spot all the time), cramping, constant nausea, bloating, not being able to empty the pouch (I go maybe twice a day), and so on. At least once a week, I am doubled over after eating and can't function. At this point, I am afraid to eat due to the pain and nausea. I had my 6th surgery in October and it showed that my J-Pouch is really deformed. It is about 3 times the normal size, has diverticula around it, it is no longer the right shape, and has a kink in a bad spot, this is on top of the ulcers inside. I also had the oh so fun defecating proctogram and it showed that the pouch has a hard time emptying as well (I think I emptied 1/3 of what I should have). I saw my surgeon recently and she has basically said that my best bet would be trying a temporary ileostomy. I had a really bad experience with my first one but she has assured me that was a completely different situation due to how bad my health was at the time. I am married and have a two year old at home and I would love nothing more then to get back to a normal life but I am scared to do this. How many of you have had similar issues? How many are married and have a bag? Do you regret going on the bag? How did your family handle it? I have the world's most supportive husband and he wants me to do this so that I can get back to my old self. Everyone around me supports it, I just have to get myself to accept it. Thats where I am having the problem. You would think this was a life or death decision! Any advice, tips, help, ideas, pretty much anything, would be great at this point. Sorry to ramble so long in this post! If you have any questions, if i happen to miss an important point, feel free to ask. I am incredibly open. Thanks for your time!!!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 7/6/2011 1:59 PM (GMT -6)   
I'm sorry to hear of your problems! I don't believe any of the regulars around here are failed Jpouchers. You may have some luck over at uoaa.org's discussion site as well as Jpouch.org so you may want to post this same thing over there as well. I'm not married but many many people around this forum are and with young kids and love the life their ostomy allows them to live. I wouldn't hesitate to go back to an ostomy if my pouch were to ever fail. It definitely sounds like you have a wonderful support system too which will be great for helping you adjust and the like. I feel like if you are in constant pain where your quality of life is basically horrible then going for the ostomy would be the right choice. End Ileostomies tend to be easier to deal with than loops which is what you had for your healing time before. My loop was kind of a pain because it was sited badly so I had to change every other day because of leaks, so what ever it was that caused you to have a hard time the first time around, talk to your surgeon about them. If your stoma was flush make sure that your surgeon knows you want a decent spout, or if the site was bad get that changed etc. Take steps to make sure that the next time around the same problems don't occur. I hope this helps a bit and that maybe you can find some others out there that have faced the same kind of challenge. Good luck to you!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/6/2011 3:33 PM (GMT -6)   
Welcome to the site! My experience is too different to give you advice based on it, but there are a lot of people on this list who opted for permanent ileos because they wanted to be able to parent better than they could being sick all the time (not as j pouch reversals). Seems to have worked out too. Will let others speak for themselves, but as betsaronie says, it sounds like you have a great support network, who will be there for you if you decide on the surgery.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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