Tami's Case History (Palmtree5572)

[palmtree5572]

On March 28th, 2008 I woke up feeling slightly nauseous. I had been hurting terribly in my side and back for several days but I'd had that side ache (in a milder form) for a long, long time and just thought it was time to have those tests my doctor had mentioned when I told him abou it.
I ate some dry toast as I fixed the family's breakfast and went on with my day. Suddenly, at about 11:00 a.m. I felt deathly sick. I went to my room and once I laid down I could hardly raise my head off the pillow. Both my hands went numb. I vomited bile.
I remember that earlier that morning I'd had a strange bm where the stools where like white jello. I took my bp and it was high. I was digging through a nutritional book I had trying to figure out what could cause pain that made you feel like you were exploding! My fever was high and I began vomiting bile.
My husband called the doctor and I told him I was to sick to go. When I got there I could only think of laying down and getting something for the pain. He asked about a gallbladdder, (gone in '77), appendix (ditto), and then he examined me. I asked if it could be pancreatitis because of the fatty stools. He said maybe but it would be rare. He'd only had one case in all his years of doctoring.
He felt I needed to go to the hospital and I was quite willing. A few miserable hours later they finally got an IV in. I kept asking for something for the pain. Then the diarrhea hit. I remember a nurse telling me they were going to be moving me to another room. That's the last thing I remember clearly for about 2-3 days.
I was told I had clostridium difficile the first day and that I had pancreatitis the next day. I've never been that sick in my entire life.
I came home 12 days later still very ill. My jaw was locked shut to about a half inch. My muscles were all so weak that if my husband didn't support me I fell over.
A few weeks later I had a colonoscopy. The GI doctor handed me a prescription (while I'm trying to wake up!) and said, "You had a small polyp, I don't think it's anything to worry about. Your c-diff is back. Get this prescription filled as soon as possible."
I didn't know how to treat it at home, how hard it was going to be to find a pharmacy that had Vancomycin, or if I could go in public. The cost of the Vancomycin made me sick. It was even worse when we got the hospital bill and we paid $71 per pill. (I was switched after a few days to Vancomycin when I didn't respond to the other medication.)
I found this group and it gave me so much information. At the first we were paying $18 per capsule for the Vancomycin. We found a pharmacy that would compound it and the cost went from almost $100 per day to $60 for several days.
I finally finished that course and switched GI doctors since my first one seemed only to be able to speak two or three words and those weren't considerate or informative. The second doctor put me right back on Vancomycin and told me he was convinced it was back again. He never tested me but instead gave me a lecture on how serious my illness was and how I had to kill it. He never tested me but went by my symptoms.
(I did not have diarrhea)
I took another round of a new treatment, had a serious reaction to it. That was Memorial Day weekend. I tried calling the doctor through the entire weekend because of a stomach ache that was doubling me over.
He never returned my call. So on to the next GI doctor.
This doctor has truly tried to help me find why I still have such terrible pain in my side and back. It's the same pain I had had for years but more intense.
Once again the C-diff was back and he put me on two more rounds of Vancomycin. Fortunately, we found a patient asssistance program thanks to this group and that round didn't come out of our near-empty pockets!
Since having C-diff I still have intense pain in my side and back. I have been diagnosed with gastroparesis and IBS. The medicine that helps the IBS makes the gastroparesis worse.
I have lots of questions that will probably never be answered. Did the terrible shock my body went through cause my stomach to be paralyzed like my other muscles seem to be? Or did I have the gastroparesis already and that left me open to the C-diff?
I live with pain almost 24/7 now. I tested negative for C-diff about a month ago after having a round of diarrhea that scared me! I'm thankful for that.
I am living on mostly liquids now with a little food when I can tolerate it.
I also have to see my GI doctor very often now and am in the process of having to make some decisions about the gastroparesis--rather to try a treatment of erythromycin, (no thanks!), see doctors at Vanderbilt and consider a gastric pacemaker, or wait and hope it will resolve itself since the doctor thinks it was caused by a virus and sometimes those cases do resolve themselves.
I will always be grateful to this group for their advice and wealth of information and the professional way it handles itself.
Until something else changes that's my history and update!