Interview with Leanne: Surgery and Life With Indiana Pouch

We're highlighting people in the bladder cancer community. I talked to Leanne in Part 1 about her early symptoms and treatment decisions. In this part, she discusses her radical cystectomy surgery, her recovery, and her experience with the Indiana Pouch.

Surgery and complications

My surgery was performed all robotically. Three urologists did my surgery which took 14 hours. I had a radical cystectomy, hysterectomy, lymph nodes removed, bowel resection, and an Indiana Pouch formed. I came out of surgery successfully but had a complication due to the length of the surgery and the position of my arm. I ended up with nerve damage in my left arm which was extremely painful. I was in the hospital for 2 weeks, with 5 days in ICU.

Recovery with an Indiana Pouch

I am still pleased with my decision to go with an Indiana Pouch. Honestly, recovery was difficult. I didn’t feel like myself for about 6 months. The first 2-3 months I leaked frequently. I had severe pain in my arm. Was tired all of the time.

Learning how to catheterize and care for my stoma

After some time, I healed well and stopped leaking. I began with cathing every 2 hours and slowly increased the time up to 4 hours between cathing. It doesn’t hurt to catheterize through the stoma. It is important to keep the stoma covered and clean to prevent infection. There is a lot of mucus in the pouch which needs to be flushed out frequently in the beginning and only once in a while now. I now am able to do everything I use to do before cancer. But I no longer swim in a lake or use a hot tub. Too much bacteria.

Now some negatives

Because I’ve lost a lot of weight (about 90 pounds), the arm of my pouch has a curve in it which makes it more difficult to cath. It also has caused me to leak if I go more than 3 hours between emptying. This will be fixed soon with a simple surgery. I have hydronephrosis in both kidneys due to either scarring from my surgery or my diabetes. I now have stents in both ureters which are exchanged every 3 months. I was hospitalized recently with metabolic issues caused by having a pouch. My blood became acidic because the Indiana Pouch was dumping sodium bicarbonate. I was very anemic due to bleeding in my ureters. I take sodium bicarbonate tablets and iron. I also need to supplement with vitamin D and magnesium oxide. I have no pain except when I get an infection which happens about once a year.

Proud of my perseverance

I don’t see the need to tell everyone about my cancer. My close friends and family know as they are my support system. It’s basically a “need to know” situation. I’m very proud of the fact that I persevered in the face of an unknown future. A positive attitude goes a long way in healing and surviving. If you are on this journey called bladder cancer, know it is survivable