I was diagnosed with UC in December, 2011. Then with C Diff. None of the drugs worked for very long and I had an emergency colectomy in Feb, 2012, the 1st of 3 j-pouch surgeries. C Diff came back big and bad in May, 2012. 2nd jpouch surgery was August 2012. I am scheduled for the 3rd surgery – takedown – Nov 27, 2012, but it may be postponed cuz, guess what?!?! I got C Diff again!!! Argggg!
Some more details about Lisa:
I used to love running and skiing, which I have not been able to do this year d/t UC and C Diff. So, had to change hobbies. I love to walk. I love to hang out with friends and family. I love Downtown Abbey. I love to read, really into David Sedaris right now. I love to research gut diseases.
Abdominal pain (getting better) and fatigue from the c diff.
C Diff For the 3rd Time:
So last Saturday morning I woke up with stomach cramps and fatigue. My husband joked with me, suggesting maybe I shouldn’t have had the two glasses of wine the previous night. I went about my day, the pain waxing and waning. Then Sunday, an atrocious pain woke me up at 5am. It continued to worsen, so we went to the hospital. They couldn’t find anything wrong except the pain, so I INSISTED they do a C Diff test (btw the ER doc said ‘I don’t think it’s that, your white blood count is fine and you have no fever, but I can do it if you want me to….’ They admitted me, and 24 hours later the test results showed positive for C Diff. I was put on IV Flagyl, oral vacomycin, saccharomyces boulardii and lactobacillus (I can’t take the stuff that Bev takes cuz it’s time released and without a colon, my body can’t absorb it properly). The pain lessened, so I was released on Friday. I’m still fatigued and kind of crampy.
My concern is that this is the third time I’ve had this blasted bug, so why isn’t the treatment different? My GI suggested a new antibiotic called Dificid, but the hospital doctors refused to put me on it due to cost. I guess it’s pretty expensive. The infectious disease doc suggested doing the vaco taper a little differently – one week on, one week off for a month. Also, he suggested fecal transplant, which I am all for, but no doctors in Northeastern Ohio do them. Has anyone had one? Any recommendations re: doctors?
My other concern is that I am going to be more susceptible to having chronic pouchitis because of recurrent c diff when I finally get the reversal done. Up to now, I’ve been assuming that this surgical option is curative, but I do have to be prepared if the pouch fails to have a permanent ileostomy. Not sure how I feel about that.
For UC – Asacol, canasa, proctofoam, prednisone, a mesalamine enema, and remecaid (infliximab) did not work at all. When I was maxed out on IV steroids, I went down to 6-8 bloody loose stools/day.
For C diff – In the past, IV flagyl & vacomycin worked, but it keeps coming back.
written by Lisa
submitted in the colitis venting area