My C Diff Story

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achan
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Joined: Wed Mar 18, 2015 1:24 am

My C Diff Story

Postby achan » Wed Mar 18, 2015 2:20 am

Hi all. I've lurked on this site so much in the past two years battling c diff on and off and I've benefited so much that I finally decided to join.

I first got diagnosed with c diff when I was 23 years old in May of 2013. I had been dealing with vomiting and loose stool on and off that whole month. The loose stool didn't faze me. I had never really had a 'cast-iron' stomach so there were always times when I had eaten too much and had tummy troubles. The vomiting was definitely unusual, but I would always have bad headaches with it so I attributed it to the possibility of migraines (which run in my family). Finally, during Memorial Day weekend, my then-boyfriend (now husband) and I drove up to the Grand Canyon from Phoenix (where we live) and I had a horrible time. Not only did I have vomiting and loose stool, I had completely lost my appetite. I managed to eat one meal the entire weekend. I finally decided to see a doctor, but as it was a holiday weekend, I ended up at Urgent Care. The doctor there had me complete a stool sample. I didn't hear back for about a week, during which time I had developed anxiety issues, (complete with panic attacks), and a racing heart occasionally at night, but when I did, the doctor told me that my stool had come back positive for c diff, a test for which he had only run to be on the safe side. Obviously, I was glad that he had been so thorough. I was put on metronidazole 3x a day for 14 days. After finishing the course, I felt nominally better, but I was still having anxiety issues. About a month later, I had a relapse with classic c diff symptoms. I would run to the bathroom about once every hour with loose stool, I had lost weight (from 125 to 117), abdominal cramps, the whole works. The only thing that was different was a distinct lack of anxiety, and I could still eat. I went to the doctor again. They didn't even test me. They just put me on another 14 days of metronidazole three times a day.

I felt amazing after that second round. My digestive system was working even better than it had before I had c diff. I had never felt so good. Foods that used to bother me didn't cause any troubles anymore. Since developing c diff, I took probiotics every morning without fail. I was so happy that I felt better. That lasted for about three months. In December/January of 2013/2014, I developed a UTI. I tried to get them to find any other antibiotic for me to take but only Cipro would work against the bacteria that I had (p. mirabilis). So I had to no choice but to take the Cipro. I started having loose stool about once every week right after I finished the course. I saw my doctors, had a c diff test come back negative, and was referred to a GI doctor. He said to try and take fiber pills. A couple weeks after starting fibers pills daily, the loose stools went away in late March/early April.

After that, I was fine for another few months. My husband and I got married in May (ironically during Memorial Day weekend a year after my first bout of c diff popped up). Things were good. But then right after the 4th of July, I started having troubles with loose stool again about once a week. It didn't seem remotely like my first go around with c diff and the test came back negative again. I had to go to a new GI doctor (my insurance had just changed over the summer) and I had a colonoscopy done. It came back with the result of focal active ileitis (which I still don't completely understand) with inflammation in my terminal ileum and the first third of my large intestine. I got put on a lot of different 5-ASA drugs finally ending with Pentasa which helped for about two months. I was feeling good once again! I had another UTI that could once again only be taken care of with Cipro around Christmas. I loaded up with probiotics, which had seemed to work the first time I took Cipro, and I thought things were fine. Then 2015 hit. On January 2nd, I had a really bad night of loose stool. My husband and I were on vacation... again. I called my GI as soon as I got back to Phoenix. He put me on another drug for auto-immune inflammation... which didn't work. Of course, by now, the Pentasa wasn't working either. They didn't even want to test for c diff, despite the fact that I mentioned that I felt very similar to how I did when I first came down with a c diff infection and that I had just had taken Cipro for a UTI. My symptoms weren't classic at the time, I wasn't even really have D. My stools would be somewhat solid (not normal for me solid) but I would be going 4 or 5 times a day. I knew something was wrong. However, it took some D in the middle of the night and fear of being dehydrated to send me to the ER where the test came back positive for c diff. I was prescribed 14 days of metronidazole 4 times a day and 14 days of vancomycin 4 times a day. It seemed to work... though I had horrible nausea on the metronidazole. I ended up not being able to finish the metronidazole, but I finished the vancomycin. Two weeks later, I had bad abdominal pain that lasted all day. I had to leave work in the middle of the day (not ideal, as I am a music teacher and there were no subs available). That night I was in the bathroom almost all night. I went into the ER with my husband. They gave me IV fluids and a CT scan which showed an inflamed colon. They prescribed me more vancomycin and told me that I could make a choice about being admitted to the hospital and going home. I chose to go home. All I wanted at the time was to get some sleep in my own bed. However, that turned out to be the wrong decision. I was back in the ER not even four hours later. I had terrible abdominal pain, constantly going to the bathroom. I couldn't even get into the car long enough to drive to the ER. The paramedics came and got me. I finally decided to get admitted. They kept me in the hospital for four days total, giving me fluids and liquid vancomycin. I was seen by an infectious disease doctor. He has put me on a taper of vancomycin which starts with 500 mg 4 times a day for a month. He had me on rifaximin as well (xifaxin), but I couldn't continue it after coming home from the hospital as my insurance denied authorization for it. They did authorized vancomycin capsules for me though, so at least I have that.

I had a referral to the Mayo Clinic GI department here in Phoenix that was originally meant to look for possible IBD but was changed after the positive stool test to c diff. I got out of the hospital in time to make that appointment. They have referred me to their Infectious Disease department so that I can get a fecal transplant if this taper does not work. I have that appointment in about three weeks.

I've been having a couple of bad days recently. I'm not sure if it's due to the fact that I've had several food intolerances this time around and I've been trying to experiment with which foods I can tolerate or if it's the c diff trying to make a comeback in spite of the extremely high dose of vancomycin. Only time will tell. I have a follow-up appointment with my current (non-Mayo) infectious disease doctor on Thursday. We'll see what he says.

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