Posted 3/15/2009 1:13 PM (GMT -6)
Sorry to be so late to this post. I was DX with Crohns in 96, and my disease decided to fistula into my bladder in 97. I had the mother of all UTI's for about 6 weeks, before the doctors finally figured out what was wrong and did the surgery. First they sent me to a urologist to get a good look see, and he said, it's either a fistula or cancer. Well, no one wants to hear either of those words! Since I had the pain in the lower right abdominal area , they were fairly certain it wasn't cancer, but had to run the biopsy first to make sure. Sigh, more time with the UTI. I took antibiotics to attempt to curb the UTI, but when you have feces flowing into your bladder, no amount of antibiotics is going to help. I did find a wonder drug that would numb my bladder so I could go to the bathroom, can't remember what it was called, starts with a P and looks like a purple Skittle. Those were the best pills in the world! Although they turn your pee a lurid shade of yellow! Finally, after I peed a sunflower seed (yes, I know, I shouldn't have had it, but I wanted it soooo bad, by then I was surviving on Gerber Hawaiian Delight and Lipton Cup of Soup Creamy Chicken, and that's all I could stomach, I caved and had a handful of sunflower seeds one day), literally peed out a complete, unchewed sunflower seed; how I didn't feel it coming out I have no idea, probably the magic numbing pills? I knew I was headed for surgery soon.
I was scheduled for surgery on a Monday, but by the Thursday prior, I was starting to get really bad, fever, chills, probably going septic for all I know. I remember laying on the table in the surgeons office hyperventilating cause the pain was so bad. Of course, had to go clear diet Friday and Saturday, take a strong course of antibiotics over the weekend in prep for the surgery. By Sunday, was feeling really bad, took my prep of Golightly (gag!) and tried to get some sleep. Body decided it wasn't putting up with this crap for much longer, as I spent the wee hours of the morning puking, with the whole fever and chills thing. How my other half slept through me repeatedly leaving the water bed to barf was beyond me. And since I had nothing in my stomach, it was mostly bile and dry heaves. She did wake up at 3am and wanted to call the surgeon, and I was like, no let him get his sleep so he can operate on me at 9am. By the time my mother came to get me at 7am to go to the hospital, I looked and felt like death on a cracker. I was so dehydrated and mentally gone. They had a heck of a time finding a vein for my IV. Don't remember a whole lot after that, and the 11 days I spent in the hospital were not so much fun. I don't think I got enough morphine, I was constantly in pain. And mentally, I was wigging. We still joke about the message I left on voicemail for my other half, it started out all, "I love you, I miss you, I'm feeling better, sob, I want to come home, I hate this, god, why am I doing this to you?" I called her at her work and told her NOT to listen to the message when she got home, and she left work to come see me immediately. And then cried when she got home and listened to the message anyway (told her not too!).
They took out 10 inches of the end of my small intestine (bye bye appendix!), 4 inches of my large intestine and stitched up the hole into my bladder. It took me about 6 months to feel somewhat normal again. And I swear, they probably took a bit of my bladder in the process, because it seemed like I couldn't hold it as long or as much as I had prior to the surgery. But, all in all, it was definitely necessary and a relief when it was done. Since then, I haven't really had a lot of problems with my Crohns until just within the last couple of months. Now I have a peri anal fistula, which they put a seton in in January, so I got that going for me. Other wise, it's day to day with the D and the running to the bathroom and what not. Got me a new, better I think, GI doc, and he confirms that I have Fistulizing Crohns, so as long as I'm not having to bad of a time, he's holding off on putting me on Remicade or anything like that. So yay, no Pred for me! Just taking Asacol, B12 shots and vitamins to see how things go for now. Although he does predict that I will probably have something happen in the next 10 years that will cause me to have major surgery again. Crossing fingers against that, but I'm a realist enough to know he's probably right. Sigh. Just take it day to day and hope for the best is all anyone of us can do I think.