J-Pouch Query

Hello everyone. 

I am just 3 months post-op Sub-Total Colectomy with end ileostomy for severe uncontrolled UC after 18 months of unsuccessful medical treatment.  At the time of surgery I was very sick and weak but started to rebound quite well under the circumstances.  However since that time I ran into liver problems as a result of a medication I was taking for a TB exposure.  I am off that medication now and just starting to feel better.  My surgeon tells me that he thinks I am a good candidate for a J-Pouch (completed in only one surgery).  Either way I have to have more surgery because the rectum was left in place to give me the J-Pouch option.  It was also brought out through my abdomen to avoid the risk of internal infection while things healed (because the tissue was damaged from extensive use of Prednisone) so even if I opt for a permanent ileostomy, I have to have the rectum removed.  I hate the ostomy and I don't believe I will ever accept it gracefully but I don't want to add insult to injury.  I have read both good and bad things about the J-Pouch but not enough either way to make a decision. 

What I am looking for are your personal stories, both recent and older experiences.

Thank you

The profile information is a bit outdated but has since been edited. 

Hey Marianne, I believe the "subtotal" in this case refers to the retained rectum. My surgeon called it a subtotal colectomy as well (my step 1 surgery) and I remember people here "corrected" me. I think it's just semantics.

In any case, OP, sounds like you've had a rough go of it. I guess the rectum is a mucous fistula right now? Must be tough, I really sympathize!

I was very sick at the time of my surgery as well so I had the "subtotal" option, end ileostomy. Luckily I was able to keep the rectum internally without bringing it forward through the abdomen.

Personally I opted for the j-pouch. It's hard for me to explain why, because unlike you I did feel pretty happy and comfortable with the ileostomy and I felt I could "accept it gracefully" as you said. However, I was told that I was a very good candidate for a j-pouch, and at the end of the day I just wanted it.

My takedown surgery is tomorrow (!) so I can't tell you about my personal experience with actually using the j-pouch instead of an ostomy, but I can tell you a little bit about my experience with the surgery to create it. It's a really, really hard surgery. Others disagree but the subtotal colectomy was *nothing* compared to the j-pouch construction. Even with an epidural for pain management, the pain was significant and overwhelming. I could barely sit up and get out of bed (whereas after the subtotal I was walking laps the night of surgery). I had a lot of pain and difficulty moving around for several weeks. It's just a harder surgery, plain and simple.

I had severe disease in my rectum after the subtotal so it was nice to get rid of it. I had low grade fevers as a result of the disease between steps 1 and 2, but after the j-pouch surgery those fevers went away.

Your situation is a bit different since your surgeon is advocating for combining steps 2 and 3, with no diversion. May I ask how old you are and if you're on any medication anymore?

*Personally* I would not want to combine the surgeries. The risk of anastomotic leak (a leakage at the line where the j-pouch is sutured to the rectal cuff) is too darn high, and you can end up with a nasty infection, and emergency surgery to create a loop ileostomy anyway. That happened to someone on the j-pouch.org boards recently who decided to combine steps 2 and 3. If you have any risk factors that indicate that your healing might be compromised, I would push for a diverting ostomy instead of a one-step procedure.

Thank you for your comments. Pluot is right. Sub-Total Colectomy means that the rectum was retained. The rest of my colon is gone. I am 63 years old and the UC came out of nowhere with no family history and no previous bowel problems or symptoms. Doctors are at a loss as to why I suddenly got it and why it developed so severely and so quickly.

I am in Nova Scotia, Canada and My surgeon said that he always retains the rectum to leave the J-Pouch as an option. If I opt for the J-Pouch, he will remove it at that time. if I opt not to have the J-Pouch, he will still remove it.

I to am concerned about a leak at the anastomosis site if the surgery is one in one shot but I am not sure that I want to have 2 additional surgeries.

if I opt for the J-Pouch, what is the frequency of BM's and what is the amount of control/urgency?

Subtotal colectomy can, and often does, mean removal of the entire colon (with the rectum retained). But it can also refer to a partial colectomy where just some of the colon is removed.

It's a bit confusing, imo.

I just had step 3 last week, so I'm a newbie :)

Like Liz, step 2 was very difficult for me. They could never get my output lower and thicker, and that made it hard to keep an appliance on for more than a day or two. Step 1 was a piece if cake, and I really wasn't minding the end ileo - I could have lived with it and accepted it, as life was so much worse before. But my docs also said I was a perfect j pouch candidate, so I decided to go for it.

So here's what I can tell you with my weeklong experience. When your bowels wake up, you will have some urgency and have to go more often. I have also had some awful wracking spasms, but that's all part of the adjustment and will go away. Using the pouch feels very normal, just like going to the bathroom before. And the urgency I'm getting now (again, temporary) is not like with UC - I can actually confidently hold it. So the first month is supposed to be the toughest, but then life should be pretty normal.

Thank you all for your comments. They are most helpful in helping me to make a decision. I will also consult the J-Pouch. org site. I will let you know what I decide. I will certainly be asking a lot more questions of my surgeon. Hope you all do well and stay well. Enjoy the rest of your summer.

Thank you Sue.
My surgeon is at the largest and best equipped medical facility in Canada east of Montreal and my surgeon is reportedly one of the best in our parts. He is very easy to talk to and I absolutely trust him.