Never apologize for the "blabber" it is so helpful to me to hear things in detail. I don't have the best support system, I have a supportive boyfriend who wants me to do whatever I feel comfortable with but aside from that people push me towards jpouch in my life just for the vanity side of things( people without our disease) and that's not a good enough reason for me to make any decision. I'm just really struggling with the idea of waking up and my body completely changing and having to learn as I go what is normal and what is not for this new system. It just seems like a lot an overwhelming and I don't know how to snap myself out of thinking it's too much to handle. I have been a prisoner to my home for the last year and even that reality feels like nothing compared to what's in my head about
what is to come, how unrealistic is that? I promise I'm
Not a nut case. Just kind of lost and having a really tough time sometimes.
I can understand your feelings of nervousness and being scared, along with just wanted to know which path to take. I recently went through th surgery myself and am only two weeks out from the third surgery that rehooked up my small intestine with my pouch. It’s a tough road, sure. I have good days and bad days. The bad days are just more of me being able to cope with such a drastic change. I did go through a day or two after my first surgery, and after this last one, asking myself if this is truly better than before when I had the worst of my UC. I have to remember i was pretty sucky so sick that I simply wasn’t living life. I couldn’t even walk my dog outside in the yard without having an accident. The surgery is a tough decision, but you’ll know if it’s the right step for you. If you can’t live with how things are now, then you’ve got to try something.
That being said, I am glad I have the pouch even though I’m still adjusting. I wanted to give it a shot, since it would give me more of a “normal” life. I use the term normal loosely bc normal is a relative term-normal is what you make it, right? Anyhow, the ostomy wasn’t that bad but I didn’t like having this thing hanging off of me. I hated the smell most times. I got used to getting up at night. Most of the time I didn’t really wake up, but just head to the bathroom, empty it and head back into bed. Your body adjusts. Some people don’t even need it empty it at night. Or, you can get a large capacity bag that holds more so you don’t have to get up. It as always good for me to drink something in the middle of the night!so getting up reminded me to do that. I’d leave a bottle of Gatorade in the bathroom (cover on) and take some beforehand I went back to bed. Is having an ostomy ideal? No, of course not. But it’s better than the severe symptoms of UC that many of us have and deal with on a daily basis.
Others can tell you the long term outlook on the pouch. I hear it’s pretty favorable (once you get past the initial stage where I am now). Even though you go numerous times a day, it’s not as bad as when y U have UC. The body is a wonderful thing and can adjust.
I do have to say I’ve been super tired THIS surgery. The first one took me 5 weeks to really get back into the swing of things and 6 weeks to get back to work. Even then I should have only twine half days. To months, almost to the day, so I didn’t have to deal with for adjust to having an ostomy for that long. This surgery was easier to recover, but the tiredness has stuck. I’m just taking naps and going with it.
Sorry to blabber- hopefully some of this info was helpful. You’re so young to have to make this big decision. It’s a tough one to make. Do you have a good support system who can help you in weighing your options? Good luck in whatever your decide.