Dear Melanie:
I am a woman with an Indiana Pouch and I second most everything Cynthia had to say. I was diagnosed with squamous cancer after 35 years of chronic bladder infections and interstitial cystitis. Stay on top of having your bladder checked, because chronic infammation can lead to cancer.
First, with regard to the surgery, it is big time and I had a lot of complications. I had a colon infection after the surgery that put my life in jeopardy. Although I was in great shape before, I spent 32 consecutive days in the hospital. Prior to surgery, my bladder actually ruptured after filling with blood. So, you have complications from chronic inflammation as well as cancer. One postive thing is that most RC surguries involve removal of the uterus, cervix, fallopian tubes and part of the vagina. I can't see a reason for this in your case, although I'm not a doctor. Your surgery may be more limited than an RC performed for cancer treatment. Even though the surgery was horrific, by 3 months out of the hospital, I went on a 3 hour bike ride with my daughter over the Golden Gate Bridge. Six months out I joined a yoga class and started feeling really good.
After the surgery, my doctor wanted me to cath every 2 1/2 hours for 3 months. Many doctors don't follow such as schedule, but mine felt that because of my complications, we should play it safe. It was like bringing a new baby home. I was so sleep deprived, I wanted to cry. But after the 3 months, I relatively quickly went from 3 to 4 hours between cathing. My pouch is full now between 650 and 750 ccs (about 2 1/2 cups of urine). It is volume more than timing that makes me have to cath. I'm hoping to stretch my pouch out a little bit more so I can hold 800-900 ccs. My doctor believes in not going more than 4 hours between cathing, so, like Cynthia, I get up once each night. I cath 5=6 times a day. Like Cynthia, I put a catheter and a packet of jelly in a disposable bag or makeup bag and NEVER leave the house, even to the mailbox, without a catheter. I flush every day and sometimes, if I feel my pouch getting irritated, I flush every time I cath. Flushing is a luxury and not a burden. I figured out how to make my own saline so I didn't feel limited in how much I could use. I have traveled a 3 times with my pouch. It is not a problem. I am starting to walk/jog (I ran 3 miles a day until shortly before the cancer diagnosis)and the pouch has no effect on this. In fact, with all my bladder problems, the pouch is a lot more comfortable. I am finding, however, that it has been difficult to get back my core strength. I'm told this will come with time.
Having had both chronic bladder inflammationa and an Indiana Pouch, I would say this: the surgery is a HUGE life changing event. But if your quality of life is being ruined by your bladder disease, consider the pouch. Talk to your doc and family about it. I was a trial attorney with interstitial cystisis and I remember being obsessed with going to the bathroom. It was just horrible. The Pouch has its little surprises, but it is not painful (after healing form the surgery). My stoma is lower than my belly button (took some talking to get it there). I wanted the option of showing my belly button and didn't like the idea of having it there. In retrospect, it probably would have been fine. The surgery scares are fading now, and only the one long one bothers me. The surgeon messed up my belly button a little. At some point, I would like to have someone fix it. But overall, surgery is worth it. Good luck on your decison and hang in there with your kids. My daughter did fine with my having the surgery. Let us know what you decide.
Gail B
