Hello all... my name is Brad!
I am coming up on 6 months since having my j pouch up and running. I have gotten over/used to some of the bumps in the road, however I am still struggling. I am curious if anyone has also struggled to this extent, and if it is abnormal, what can I do?
I deal a lot with constant bathroom trips... to be expected I know... but I am also pounding the fiber (Metamucil, Imodium, fiber gummies) and am not sure if it is actually helping. I pretty much have liquid diarrhea most of the time. Is it okay that I take basically a bottle of Imodium every week? Is it normal to constantly struggle with diarrhea to the point that your skin is raw and hurts?
Possibly a dumb question... but is it normal to wake up 3-4 times a night, and sometimes still have accidents while sleeping this far after or farther than this after surgery? I also cannot sleep on my sides or stomach as it makes my insides start moving around and I feel like I have to go...
My last struggle is pouchitis. I have pretty consistently been on a combo of Cipro and Flagyl for the last 6 months. They seem to be the only things that actually help me to feel "better." I experience going the bathroom and barely being able to go, and severe abdominal pain as well as frequent and severe cramping. My gut will build this "pressure" feeling and hurt really bad and then rumble really loudly. I know that pouchitis is common, but is it normal in my case that it is not going away? No longer than two days after I finish antibiotics it gets really bad again. I even have days where the antibiotics themselves seem to not work great. I also have been taking the probiotic VSL #3 for quite awhile now too.
I am still trying to stay positive about everything...about life. IT COULD ALWAYS BE WORSE, but it is hard to think that way all the time, especially being 25 years old. I just want to know if I will ever feel normal, and not constantly have to think about bathrooms and what I can't do and where I can't go anymore. Or at least, what will be normal? I know a lot of people from what I have read eventually go back to having a pouch, sometimes far after surgery and sometimes not, but is that also something I will need to plan for when I am older?
Sorry for the spam of questions and to "vent." Any advice and responses are so very much appreciated.
Thank you!
Brad Epps