Posted 3/22/2012 11:39 PM (GMT 0)
Well the title explains most of it really, but there has to be a reason I'm not feeling well. For some background, I was diagnosed with UC in 2008 and had a colectomy in 2009, my surgeon screwed up on my take-down (part 2 of 2) and I got peritonitis, multiple staph infections, and lost fifty pounds in a month at the hospital. Lots of drainage tubes were placed in me and I had every machine of the sort hooked up to me. I know this is common in this forum, but I can't seem to find any support around Minneapolis. They ended up doing an emergency reversal on a Sunday night with my surgeon's boss instead of my initial surgeon, who then took over my case. My surgeon was then "put on leave" and her boss was my surgeon for my next surgery too. The second ileostomy was horrid, I still have scars from how the bag irritated my skin, although I'm sure they will fade. I had a PICC line for nine months hooked up to fluids because my output was so high. I lost another fifty pounds somewhere along the line and it was a really traumatic time for me. I already have anxiety problems so I'll admit I never coped with them well. I tried to be like every other college kid and drink and smoke like nothing mattered, but I've started taking better care of myself since I moved out of my mom's. I'm taking vitamins and working out, and have started living a better, more realistic lifestyle for someone in my condition.
But I still don't feel great. I am weak since my C. Diff infection in January, and I have such trouble emptying my pouch. Except of course when it's all liquid. What happens with me is I get false alarms, where I can push out a little at a time. I wipe every time so eventually my skin gets wiped away and I get really sore, especially considering all the stomach acids that pass through there. I have to twist around and lean forward on the toilet seat to smoothly empty my pouch. I have a fissure that keeps popping open every time I have a hard bm, and have been to the ER quite often recently to get fluids and something for abdominal pain. They made an emergency appointment with my surgeon for me because my CT indicated my intestines were really inflamed but they couldn't tell anything more than that because they weren't that kind of doctor. So after seeing my surgeon today she told me my pouch looked great and if I'm still having problems emptying in two weeks then we can do a test where I pass dye through my pouch while they do an x-ray because my gut may still be funky from the infection. But I've been taking probiotics and when I explained my difficulty emptying to my gastroenterologist she referred me to my surgeon. I had this problem before C. Diff, I was in and out of the hospital before that, and now they're saying there's nothing wrong with me but yesterday my intestines were inflamed..? I just am finding it hard to maintain hope and it's hard to explain it to people without grossing them out so it's a pretty lonely hopelessness. Anyone have any pointers? I'd appreciate any input, thanks.