I had a total colectomy and ileostomy surgery on the 9th of July. The plan is to get completely off of prednisone (I'm on 10 MG now but have had a terrible time in the past coming off the steroids so I'm HOPING it works out well this time around...) then in a few months have the surgery for the j pouch but I have a few concerns. First of all, could anyone tell me exactly what the j pouch is, how it works, and what I should expect during/after the surgery?
I'm also scared that if I do go through with this I'll go back to square one- urgent, frequent stools multiple times a day/night. I don't want that. In fact, I'm terrified of that. Especially the urgency.
Has anyone had similar worries? Can you tell me how your life was/is after having the j pouch as well?
The j pouch is an internal pouch made from a portion of your small intestine. It's brought down and made into a j shape and attached to a very small amount of rectal cuff that is left. It essentially becomes your new rectum. Stool enters the j pouch and stays there until you feel the urge to go. Since you've already had your colectomy, your next step would be the removal of your rectum and the creation of the j pouch. Then after some healing time, your takedown surgery. (Ileostomy reversal). Expect frequent trips to the bathroom after takedown until your body adjusts to its new plumbing. This will vary from person to person. I never really had a lot of bm's even right after.
My life with my j pouch has been great and returned to normal. I use the bathroom about
4x a day with no urgency at all. I can hold it for a long time if need be. I'm on vacation right now and I was fishing with my son and my brother in law yesterday out on the boat for 6 hours. Toward the end of the trip I felt like I had to go but was able to hold it no problem until we got back. I can also eat a normal diet....no restrictions. My sister and my uncle also have j pouches....my sis for 23 yrs and my uncle 18 years. They have also done well with no issues.
It's very important to have an experienced surgeon who has done many j pouch procedures.
Marianne- age 47
DX Pancolitis in 2005. Family history of UC. Symptoms started shortly after I quit smoking
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs.Very happy j- poucher