hey all,
I know this forum well as I read it ritualistically before getting surgery. My j-pouch surgery was in 2012. I spend the first few months post surgery hoping my life would get better. It did involve many trips to the bathroom, tons of nighttime incontinence. Terrible butt burn. As the years have gone on is has gotten better. But burn is rare. And I rarely have to use zinc oxide ointment. Winters still suck, dry chapped butt is no fun. I still use the bathroom many times a day; 3-6 depending if I snack. (No snacking is best). I also was taking loperamide 4mg a day- I do want to warn about this. My doctor said it was fine to take loperamide daily. I had terrible headaches on them, especially when I forgot to take it, my body became addicted: it's an opiate that doesn't cross the blood brain barrier so your body can easily become addicted. My liver had really bad levels and I stopped the loperamide. levels went back to normal 6 months later. Ask your doctor to monitor liver levels post surgery. Especially as 10% of us will apparently get Primary Sclerosing Colangitis. That was in 2014.
My advice is to find a nice soft toilet paper that works for you, have zinc oxide ready for overnights. I still have some night incontinence. However, I have begun to exercise. Hydration is key but since I've stuck to a regular exercise regimen. My muscles have gotten stronger and I have had little to no incontinence the last few months. No food after dinner is also important for this. I have also had two children post surgery. I couldn't even think about kids as I was always in the bathroom pre surgery.
I just want those worried about the surgery; seeing all the problems people have, won't necessarily happen to you. Most people have good pouches, and it's unfortunate for those who don't. But healthy pouch outcomes rarely come back to this site because they don't have to think about their pouch all that much.
I have not regretted my decision. I can only make the best of an aweful thing that happened to me. I'm healthier and fitter than I have ever been as an adult. I rarely have significant problems with the bathroom or my pouch that can't be managed. Doctors speak of "a new normal". I have found it. It involves understanding from family and friends, even coworkers of my condition. It involves a smartphone to make bathroom visits entertaining. It involves knowing when to stay on the toilet to "get it all out" so I can use the bathroom quickly when needed other times of the day. It involves men's urinary pads I wear backward to protect from incontinence and it involves a spouse that doesn't make me feel less of a person over that. It involves eating healthier, and unfortunately avoiding spicy food I used to love. It involves exercise and being fit. It involves eating only three times a day to reduce the amount of bathroom visits. But most of all it involves living my life, something I wasn't doing prior to my surgery. There will be new challenges to manage especially right after the surgery. But for most people, life does get better.
