Howdy,

Glad I was able to find this group.

Here is my situation: I have had UC for 10 years. I have responded well to treatment and medications. Other than the occasional flare up and minor inconveniences I have been fairly healthy. I had a routine colonoscopy early in May. They found a polyp in the cecum, It’s the first polyp found in the history of my colon exams. A week later my GI sent a letter saying the polyp has Dysplasia, I was told I don’t have cancer, but my UC was changing and this Dysplasia is a pre cancer growth. GI recommended I see a Surgeon for further discussions. I met with him and he needed to study my path stuff and my records and will get back to me. Expecting to hear back any day.

My Concern: After doing some research on surgeries I will probably have my choice of either a J-Pouch type or the permanent bag type. For my line of work I am a courier driver, I usually work 10 hours a day picking up and dropping at office buildings and other business. I have read that the permanent bag system needs to be emptied 6-8 times a day, about the same a person would have to go normally with a well healed functioning J-Pouch surgery. Most of the time I will have a lot of access to bathrooms. But sometimes I won’t.

My Question: For people that have the J-Pouch. Would I be able to go to the bathroom without having the urge to go to the bathroom? Guess I am concerned for my ability to do my job. Keeping myself empty as possible to avoid a mess when a bathroom is not available.

Winston

Hey,

Like you, I had UC for 15 years, was in remission, and then had dysplasia during a routine colonoscopy. Then had surgery 3 weeks late in a one-stage procedure.

I am now 8 months out. As your pouch first adapts, it will be like you have UC all over again. Urgency, frequency, gas, etc. But in time, your body adapts and you will eventually go down to 3-8 bm's a day. That seems to be the average (as we are all different).

I now go around 7x a day and now that my pouch is adapted, I never fear an accident, like I did with an UC flare. I usually go 1-2 times before work, 1-2 during the day, and around 3 times in the evening. And once at night. Yes, it sounds like a lot, but I am in the bathroom for a short amount of time and I never get "urgency". I can hold it in. It can get a little uncomfortable(feeling of pressure) if I hold it in too long. I also notice that I go around 4 hours after a meal when everything is digested.

Hope this helps!

Make sure your surgeon works with a pathologist that has a lot of experience with IBD. IBD cancer/dysplasia is quite different than the general population, so you want to make sure the right person reads your pathology reports.

Best of luck

one more thing...

If you know that you will not have access to a bathroom for a while, you typically will be able to go some, even without an urge.

Winston,
Every person's outcome and recovery is different but I can tell you that I had UC for 13 years and currently have a j-pouch. My biggest complaint with my UC was the urgency issue. I have been truly blessed with a well working j-pouch. The output is different but the urgency is gone! I still may go 5-6 times a day but it isn't the emergency it used to be.

Personally I would never opt for a permanent ileostomy bag before trying the j-pouch. However, I know I could handle life with the bag if I had to.

I'm glad you found this group, it was a great source of comfort when I was deciding on surgery. Lisa

Thanks for the quick replies.

About the surgeon and path stuff.. I am dealing with the University of Minnesota and a Dr. Rothenberger. He told me the U of M Path department has someone who only works with Gastrointestinal and Dysplasia. My GI Dr.Pieper-Bigelow highly recommended him.

Hope it was OK to post their names.

Winston

I can empty my pouch even if I don't have the "urge" to go. But be ready to go again in a few minutes because once you go it usually puts gravity to work and then you'll need to go again but after that you should be good.
If I'm going on a road trip or something I always go a few times before I leave just to make sure it's good and empty.
And then you can always hold it too for a bit. With the bag, you have no control over when it will fill up and you may have to empty it if it's getting too full.
Hope this helps.

Heard back from the surgeon I had the consult with.. Looks like I get to keep my colon at least for another year..

Thanks again for the replies. I have learned alot reading these boards and this site.

Winston