Millie's case history

[Guest]

My introduction to Clostridium Difficile came in September 2002, following 7 days/7 pills of Levaquin for a urinary tract infection. Just after finishing the drug, I took Medrol (prednisone) in a decreasing dose for 6 or 7 days, in hopes that that would calm down some serious arm pain coming from a herniated disk in my neck; so my immune system was knocked back by the prednisone, so in effect I was “set up” for C Diff. Within a week of finishing the prednisone, I became very ill, weak, feverish, very bloody stool, with the distinctive odor I later came to associate with C Diff, but surprisingly, not a lot of diarrhea, YET. It was a Friday when I called the doctor, and got in right away to see him. I had a WBC of more than 20,000. He almost immediately said, give me a stool sample if you can, and start on Flagyl right away, as I think you have pseudomembraneous colitis and C Diff. I felt so ill that it was a major thing just to be up and about, and got under the electric blanket as soon as I got home, as I was just chilled to the bone. After about 2 days, I began to feel a little better, and after 10 days I was much improved and thought I could put it all behind me; the stool sample had come back NEGATIVE for the C Diff toxins. I may have been able to recover EXCEPT, at the end of October, I had to have surgery for my neck, and got a combination of IV clindamycin and IV Levaquin for the surgery. Within 2 or 3 days, I was sick again, this time with severe diarrhea, and had to start Flagyl again. This time it would take more than 10 days of Flagyl, but I was able to get somewhat better with a few rounds of the Flagyl. Then I took 3 tablets of Cipro over a 3 day period for a urinary tract infection. I had my first and only positive toxin test then, and was put on Flagyl again, and became unable to keep any food in without throwing up. I managed to limp along until I was able to get in to my GI, and then I was given Vanco for the first time, and of course, since Lilly, the manufacturer, wasn’t making any available then, it was a real scavenger hunt to get enough to fill one prescription. I just had a list of pharmacies, and was able to get 1 here, 5 there, a whole 15 somewhere else. As the months went on, I tried tapering the Vanco, but could not get far at all with that, and the doctor didn’t want me to do pulsing. So I took Vanco for months and was unable to get off it at all. My GI then sent me to an infectious disease who had me take a combination of Vanco and rifampin; he said that this has been an effective combination for this patients with recurrent C Diff, and it seemed to be helpful for me; this was in November of 2003. I had what I thought was a relapse, but Vanco did nothing; I eventually, in January of 2004 ended in the hospital with major bleeding, and the colonoscopy confirmed that I now have Crohn’s disease. The symptoms I had looked very much like what I’d had for more than a year, but it is definitely Crohn’s. <BR> <BR>I’ve had a major chronic illness since I was 20 (I’m 56 now), and have had several spine surgeries, including a fusion. I’ve had a heart attack in 1998, and in February of 2004 I had a stroke, and found that I had had 2 others without symptoms. Doctors looked at everything, and to this day do not know why I was having strokes. The one in February of last year affected my reading ability and my vision, and though I have come a long way back, I know now that reading (which has always been like breathing to me) probably will never be as easy for me as it used to be. I’m on an immune suppressant drug for the Crohn’s, which was really scary to me, knowing that I’m just one antibiotic away from the C Diff nightmare again. My younger sister actually died from Crohn’s that no one knew she had—it perforated, and she died from blood loss. She and I shared a genetic marker for the chronic disease called Ankylosing Spondylitis, which we both had, and that disease often partners with Crohn’s. Thus I know that I had a very good chance genetically of developing Crohn’s, though I do wonder if having so much C Diff going on for so long may have set things in motion. I am allergic to many “normal” antibiotics, so could be subjected to the combination of antibiotics that got me in so much trouble at any time if conditions are right. I take 20 different prescription drugs every day, and having the C Diff in the equation is very sobering. I continue to take Florastor, PB8, and reuteri every day, and I have some higher dose (250 mg) Florastor on hand if I ever need antibiotics again. I also take cranberry capsules every day, to prevent another UTI. Though the stroke was extremely scary, and I know how lucky I am to have 3 strokes and still be able to walk, talk, and move, I have to say unequivocally that what frightens the people in this house more than anything is the very real possibility that I’m only an antibiotic away from this nightmare again. I know that I was very fortunate that my doctor realized what was going on right away when I was so sick; it’s great to have someone like him in my corner, not just for C Diff, but in general. C Diff is a lonely disease, even with very supportive people around me, and finding this support website allowed me to get reliable information as well as to interact with others who are living the same nightmare. Looking back on this history seems so benign, but living one day at a time with this thing will never be erased from my memory. I feel like some kind of veteran, and if I can help someone else dealing with it, with information or support, I want to do so.