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Hi all.

I am new to the group and need some advice from those who have gone through the J pouch surgeries.

I just recently had the ileostomy take down surgery for the second time with similar results. I am unable to eat or drink anything at all. If I do, I become extremely bloated and vomit for hours on end unless I get one of those lovely NG tubes inserted.

Even on TPN without eating, gas builds up in my j pouch and is extremely painful. I get some relief by self inserting a rectal tube to move my bowels a bit and release some gas. I have very small bowel movements on my own and need to use the rectal tube multiple times per day. It does not fully get rid of the pain either.

My doctors did not find any strictures or obstructions and think the root cause of my issues are my pelvic floor muscles. They also injected Botox into my sphincter muscles to see if that would help me move my bowels. The doctors are trying to get me to get my ileostomy back, but I've been through so much already I wanted to give my muscles a chance to work. If I get a 7th surgery, I am afraid it might be my last since this whole process is quite draining. I'm only 30 though and the bag is not ideal for me. My skin is very sensitive, and I need to have a Hickman line with the bag to remain hydrated.

I am uncomfortable at home, but seeing if anyone else had any similar experiences and/or advice. As I mentioned, the bag wasn't ideal, but at least I was pain free.

Thanks for your input in advance.
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I'm sorry for your pain. I have no advice, as I never had these issues. I would say based on what you describe, though, I would indeed go for a permanent ileostomy and be done with it and deal with those issues vs what you're dealing with now. Perhaps a *true* end ileostomy, with no J pouch at all, would be best for you. They're easier to care for than a loop, and a farther down an ileostomy is placed may lessen your hydration issues, being that there's more transit/bowel time. Loops are pretty high up the small bowel and tend to be looser/more watery output. Whatever you choose: good luck.

I can relate somewhat to the decisions that you are facing since I had to have my j pouch removed due to high grade dysplasia near the sphincter.  One thought is to get an evaluation of your condition at Cleveland Clinic since they specialize in dealing with pouch problems.  A second thought is to research the k pouch and BCIR (similar procedures) that avoid the need for an outside bag. These procedures are not widely known and are useful for those with failed j pouches and problematic ileostomies (sensitive skin issues, leakage, personal image difficulties, etc.).  I have a BCIR that worked out well (over 90% do) and has provided me with a very good quality of life.  I wish you the best with whatever you choose.

Bill

Hi Tiff,

 

I second the idea to see the specialists at Cleveland Clinic.

Their colorectal surgery team down here in Florida saved me from a permanent ileostomy after my first j-pouch (done by a good surgeon but not  specialist in the j-pouch department) was set two inches above the rectum, leaving me with 2 inches of Colon.

Those two inches then developed high grade dysplasia and it was determined that I will need a permanent stoma. Fast forward a second and a third opinion and I ended up with Dr. Nogueras in CC Weston and he was incredible. 

I am 6 months into j-pouch number 2 and am quite pleased. My thought was that I can always get a permanent stoma if this failed. But I wanted to be sure to try everything before I give in to a permanent bag.

 

Good luck !

 Toddi

Thanks all for your advice. I actually did switch over to the Cleveland Clinic after my first set of failed J Pouch surgeries. I am a patient of Dr. Remzi's so I don't think I can get a much better doctor.

I will definitely look into alternate pouch options - maybe that will work out well for me. I am currently just trying to tough it out for a few weeks to see if the combination of physical therapy and Botox will work for me before I explore other surgical options. My tolerance for being in pain has definitely diminished over time so I am glad to hear that there are other options.

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