I had the surgery when I was 42, I am now 48. When I was researching options I looked at the j-pouch, the BCIR (a modified K-pouch) and a permenant ileo. Prior to research I was leaning heavily towards the BCIR because of the horror stories I had heard about
the j-pouch. I ruled out the BCIR when I realized that I would have to carry intubation items with me. I am a woman who doesn't even like to carry a purse so the thought of having to carry something and clean these items in public restrooms was a hinderance for me. I am very active, my passions are 100-200 mile hikes and backpacking. With a permanent ileo I was concerned about
having potable water on my journeys in the event of a change. Cost of supplies was also a concern as well as image. I hate to admit that but even though I am single and do not plan on marrying, I was style very concerned with how I would feel about
myself with a permanent ileo. I became convinced to try a j-pouch when I met a nurse in the hospital while I was a patient on mandatory 9-day bed rest for UC. She had had UC and had j-pouch surgery some years ago. Since her surgery she had a baby, ran marathons, and worked demanding 10-12 hours a day as a nurse. She became my mentor and her story gave me hope.
As for complications, other than a couple of minor partial obstructions in the first year, I have had none. There is NO urgency with a j-pouch. I think the biggest misinformation is frequency. Yes, frequency is higher but many of those times occur during urination. I would venture to guess that no one knows how often they urinate in a day, the same is true with a j-pouch, I have no idea what my frequency is. I do know that emptying a pouch is not the same as emptying a colon. To empty a pouch is a fast as to urinate. I do not spend hours in the bathroom. If that were the case I certainly wouldn't be hiking 100-200 miles in the hills using the great outdoors as my restroom. With a j-pouch I do not need to know where bathrooms are. I am not sick, there are no accidents, and I can hold it if I need to. Other than not being sick, the j-pouch has allowed me to have a diet that is very high in fresh fruits and vegetables, something I missed when I had UC.
If you are considering a j-pouch I would recommend a consultation with a very experienced colorectal surgeon. At that time you can ask very specific questions about
age and outcome. My GI was opposed to j-pouch surgery and tried to convince me to get a permanent ileo. What I later learned was that his information on the procedure was outdated and advances to the surgical technique had been made but he never followed up with the literature. He also had never, in his 25 years of practicing, had a UC patient lose a colon so he was not an expert on surgery. I thought highly of my GI but I really didn't think he was qualified to make a surgical choice for me and I went against his wishes. Since surgery I have not had to have a GI so I guess this was a good decision for me!
Again, I have met lots of people who have had the surgery in the 50s, 60s, and early 70s. Not one of them has been disappointed. Yes, life is different without a colon, I think everyone would agree, but each surgical option has it's advantages and disadvantages. Only you will know what the right choice for you is.
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free