I'm not trying to rant....I am sorry if I'm coming across as hostile. I just don't know if it is good advice to just "deal" with it and accept it as part of my life. I want to have a good life. We all do! That's why we all had the surgery....
But leaking poo and yellow stomach bile (as I did this morning b/c I didn't eat any solid food yesterday) isn't an acceptable way of living, to me. Neither is having gas cramps all day long, no matter what I eat. I also don't think it is normal to have urgency and muscle aches after eating plain tomato soup w/ bread and bone marrow broth with pieces of beef in it, cheese and crackers. None of these things should cause me the pain I'm feeling. I also didn't feel this bad in the first two to three weeks, so is it normal to get worse? I thought the symptoms/control were supposed to get better over time.
I'm sorry, really, but I am listening to everyone's suggestions. I'll try Gas x, Beano, and Digestive Enzymes. I have all of them now. I'll just try one each for a few days when I start eating again. I'm a bit confused by the diet recommendations b/c I don't know what I am supposed to eat to bulk the stool up, if not carbs and starches? What do ya'll use in place of those things to bulk up? I'm just real weary of diet modifications. Doctors don't seem to recommend it, and I am a poor grad student, so it is hard to completely do away with easy to make/eat food groups.
And after not eating any solid food yesterday, I feel so much better. Really. Aside from the leaking, I feel good right now. I tried cheese and crackers for breakfast and that seems to be digesting fine. Nice and easy. And I had a milkshake yesterday, which did cause a little gas, but it was a manageable amount. Very little cramping. So I don't think I have a problem with dairy. I know I have a problem with veggies, so I'm not going to try those.
I'm going to try adding things back to my diet, one at a time, to find the culprits of the gas pains. I'll then cut out whatever foods cause it. So, I guess I should try carbs next and see how they do. When I had UC I could eat anything...because everything made me sick, lol, so it didn't matter what I ate so much. But I did learn that small amounts of food were easier for me to digest. So maybe it isn't the food making me cramp, but the amounts I'm eating?
Thank you! Yes, I'm angry. I do hope it gets better and I'm able to feel as grateful for my pouch as everyone else seems to be...I'll be 25 in a few months. So I'm young, and I'm missing out on a lot of my life because of all these surgeries and mishaps. It doesn't feel like it gave me my life back because I had more of a life when I had UC... in fact, the last four months before my colectomy, I had 0 symptoms. I had had C-Diff real bad, been in the hospital, then got out and felt wonderful. Suddenly, after 4 months that I thought was remission, I started having bad symptoms, worse than any flare I'd ever had. I was hospitalized, in a lot of pain, and doped on Ativan b/c they were afraid to give me pain meds, in case of Toxic Megacolon. Steroids weren't working, so I was told that I had to have surgery and I agreed to it, but I barely remember doing so b/c I was so out of it. When they took it out, they told me that it was terrible. That there's nothing I could have done to stop it and that it seemed impossible I lived w/o symptoms for months. They did tell me that my colon showed early signs of TMC, so it was a life saving surgery. But right now I don't feel like I'm living a real life.
Okay, sorry, I know I shouldn't rant here. I'm glad there's an upside to the fistula!
I did see my surgeon yesterday and he was very helpful. I was given more Lomotil and a prescription for Flagyl in case it is pouchitis. I'm also going to have a scope on Friday to check things out and make sure there's no structural issues and to check for inflammation in the pouch.