So sorry, Gin, but yes, you can do this! Just look forward to feeling better. Even with a stoma, despite it's inconveniences, you can regain your health and well-being. Look forward to that. 

What rotten news, Gin. I'm so sorry.

I can't offer any ostomy or specific surgery advice, but I had the thought that it might be a good time to focus on the underlying medical situation, as opposed to the surgical situation that has dominated the thinking for a while. Do they think you may have Crohn's? In any case, one way to facilitate surgical success later is to find the right medications to settle things down both pre- and post-op. This is particulary important in Crohn's, which can still do its usual thing after an end-ileostomy is placed. Good luck!

It is major surgery to remove the pouch and go to an end ileo. It needs to be done by an experienced surgeon. Some people abandon the pouch and go to end ileo. This can work but did not for me.  If you go that route it is pretty simple but since it didn’t work for me I cant recommend it.

The operation to remove my pouch took about 4.5 hours, I had lots of scar tissue, they did mine laparoscopically.  I am probably the only one that will post that did not get Barbie/Ken butt. There may be reasons to go to Barbie butt such as crohns or fistulas but I had neither. I did not want to deal with the wound recovery issue. Like everything else the experience is individual. I have been happy with the results, it’s been over two years and I have had no major issues. I am very active and do not feel at all restricted. Good luck.

At this point I just want to be able not think about my hiney all day long!

I have been "reclassified" as Crohn's, but all tests come back negative. The reason for the reclassification was the fistulas; my surgeon did this so that my records are marked critical for emergency purposes. But I will definitely speak with my surgeon about this issue before surgery!

Gin

Gin, you certainly gave it your best, and I am so sorry that things did not work out for you.  I cannot relate to what life with a permanent ileo is like because I opted for a BCIR when my j pouch had to go due to high grade dysplasia.  This procedure or the closely related k pouch might be a good alternative if you have access to a good surgeon who does them, and no external bag is needed.  Removal of a j pouch is a major operation, but my surgery went well and I was back to most of my normal activity in 3 months.  My bottom was fully healed when I left the hospital 3 weeks post op and I was off of all pain medications at that time.  Best of luck with your surgery.

Bill

Hey Bill, isnt dysplasia of the pouch very rare? Thats what I was told by my Cleveland Clinic docs. I had low grade all through my colon which was my reason for the jpouch. Its disconnected for over a year now due to a leak. Surgeon states as long as no issues the pouch can stay as is with my temp ileo. It just worries me a little that since i had it in the past i will get it in the disconnected pouch as well. Shen is going to attempt one last try to close the leak in the summer and i'm asking for biopsies due to it being awhile since i've had any.

Pouchomarx, the dysplasia I had was in the short section between the pouch and anal sphincter and can become cancerous.  A malignant lesion was successfully removed 6 years earlier from the same area, but removal of that section could not be done without making me incontinent.  I never had dysplasia in the pouch itself and the cuff was clean for 25 years following my original surgery.  I hope that Dr. Shen is successful in closing your leak.

Bill