No worries about hijacking my other thread. I asked for you to move it here because I wanted to ask my own questions about surgery, because I'm strongly considering it right now. I want to get rid of this nightmare organ!!! It is ruining my life!!!
How are your food tolerances now? Can you eat whatever you want? I mean, I know having an ostomy limits certain food choices in that sense, but I mean... the food allergies themselves, did they calm down once your colon was removed? I dream of the day that I can eat gluten again. If surgery could guarantee a return of gluten and dairy to my life, that alone would be worth it. I miss good food so badly.
Is your immune system stronger or more normal now or do you still have "auto-immune"? One thing I notice big time is that since I developed IBD I catch colds very easily. Any change in that department after colectomy?
How long does it take the j-pouch to adapt to being a new rectum? Is there a lot of incontinence in the first couple of years? How often does the average person go to the toilet after all the healing is said and done?
I really miss traveling and I really miss eating. Those would be the two things I'd hope to get back after surgery.
I eat everything, probably more things than I should. Sweets, candy, bread, cocktails, fish, salads, shellfish, literally everything (except jello, hah). I know certain foods slow output, which can be nice, like potatoes, but I don't go around loading up on potatoes to avoid going an extra time each day if that's what it comes to. A lot of people take imodium quite often after surgery, my surgeon said some pouchers like to "fine tune" things, but I personally don't get too caught up in it. I go when I go, and I don't worry too much about
consistency, or # of times. I just go when I pee. I never felt like my problems were due to a food allergy or intolerance. Certain foods may have aggravated symptoms, but they didn't cause my colon issues, and now without a colon, they don't cause me any issues at all.
The one thing I hate is if I get up in the night, and many nights I do. Sometimes I will be up anyway and figure I might as well go, but there are times I get up to go, and it makes for a less restful sleep. I am a very light sleeper, and I never get many hours straight, never have, and a j-pouch doesn't necessarily help. I was up all the time with nocturnal BMs with UC, and that would keep me up repeatedly, and for long periods. At least if I get up to empty, it takes literally a moment. If I eat earlier, I can avoid getting up, but it's not always possible to eat early, nor am I willing to change my entire schedule, so I deal with the repercussions.
I never had incontinence. No one can tell whether you would deal with that, maybe a surgeon if you went on a consult. I have heard it can be common shortly after surgery, but since surgery I've always had a very good ability to get to the bathroom. Immediately following takedown was tough, I was going a lot, and I didn't know if it was gas or a BM. I would have to go to the bathroom for everything. The gas was not comfortable for a few weeks, probably just normal healing, but kind of bloating and painful. All that is in the past now. I feel like I am overall my health probably a bit stronger. I may have had one or two minor colds since surgery. I am sure my immune system isn't as strong as a normal person's, but I don't get sick like I did on the medications. I think the average j-poucher goes 6x-8x a day.
That's all my perspective though, people have all different experiences. Younger people tend to heal faster and go less. I was in my 30s, probably a fairly average age to have the surgery, but I've heard of people very young, and much older having this surgery.
j-pouch.org is a site with all pouchers. If you're really considering it, you should go over there and research. Also, taking small steps now to ensure you're a good candidate, is better than waiting until it's emergency. Go on some consults, find a surgeon you feel comfortable with, ask tons of questions, make sure your expectations are realistic... We can help you get a list of questions together, or you can search or ask on j-pouch.org. With this surgery, you want a very experienced surgeon. # of procedures performed is an important statistic. Get imaging done to get a very clear diagnosis. One of the big items is fertility, surgery can reduce a woman's ability to get pregnant.
Sorry this is so long. I really do hope you start feeling better & that you can put UC in the background for a very long time (or for good - we all hope for that!)