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.Wow that's awesome, congrats! But I've heard a lot of things about
the j pouch- some say it was the best decision, some say it's the worst they've ever made. I don't know what to think. The ostomy is annoying but I'm slowly getting used to it. I certainly don't want to live with it for the rest of my life but I also don't want to go through with the j pouch surgery if it's not going to be very beneficial for me. Do you have any idea of the success rate with getting the j pouch? Or any idea why some people suffer and some say it's the best thing to ever happen to them? Could it be a medication or other health reasons that the j pouch effects people differently?
Thanks for your reply!!