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Jpouch to ileostomy?

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Posted 9/11/2014 2:34 PM (GMT -5)
Hi everyone! I was wondering if anyone for WHATEVER reason had their jpouch and then went to a permanent ileostomy? I am only 27 yes old and was dx with rectal cancer and FAP last year. I had a total colectomy with rectum removed, temp ileostomy, and now jpouch for about 6 months. I have developed a deep fissure. GI doc says about 1 cm deep. I also deal with incontinence, I think due to radiation. So the fissure is having a hard time heal. I am in pain 24/7 and am on no pain meds. Surgeon has started me on paregoric to try and help incontinence. He and GI doc are apprehensive about suturing or cutting fissure due to low sphincter tone already. I am trying to give it to the end of the year to try everything I can but can NOT live like this. I am thinking about doing the BCIR sx or going back to bag to improve my quality of life. Any suggestions, comments, ideas, maybe this has happened to someone? Thank you for any feedback!
Posted 9/11/2014 2:55 PM (GMT -5)
I had UC that went to rectal cancer and I tried a J pouch which after about 20 months I had diconnected and then 6 months later removed. Have end ileo. I am happy with the results. Disconnection is a pretty simple operation but it didnt work for me due to uncontrollable excetions Excision of a J pouch is very tricky and you need a surgeon that has much experience.

I think and have read that radiation is problematic because of the tissue damage involved. I believe that it contributed to my failure but I had other structural issues also.

I really didnt consider a Koch/BCIR. I just wanted to go with the simplest surgery that would allow me to resume a full life, the end ileo has allowed that. While conceptually they seem great and are for some people I had had enough messing around with my body.

Good luck
Posted 9/11/2014 4:37 PM (GMT -5)
Thank you! Just curious, how old are you? How many radiation treatmeants did you have? Yes, I do believe that is a big factor in why I am incontinenet. From radiation damaging all the tissue down there. I have not had a period going on almost two years bc of that sh$t! Also, what's the difference between an end ileostomy and the loop? Wait....typing it out I think I answered my own question. End- they tie off where no stool will pass through and the loop is where it is not closed off?
Posted 9/11/2014 11:55 PM (GMT -5)
Age 62 now, its been almost 5 years since I had the first treatments. I dont really remember how much radiation I had (28 rings a bell) and it was chemo (xeloda) radiation. Basically the standard protocol of chemo radiation, surgery with Jpouch formation ( loop ileo), chemo, takedown, 18 months later disconnect, then 6 months later pouch excision and end ileo (not quite 2 years ago). I had had enough medical stuff.

The loop ileo is where they loop the intestine and form a stoma where most waste exits. In my case the intestine continued past the stoma and to the newly formed J pouch to be attached to the a small rectal cuff. End ileo is just that the intestine ends with a stoma. The rear end can be sewn up (what people call barbie butt) or left intact. Depends on the disease and surgeon. My anus is still intact and I have no issues with it.
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