Mom of College-Age Daughter with UC and C. Diff

Meet Cathy:

I’m a mom of college-age daughter with Ulcerative Colitis. I have been gluten free since 2008 due to gluten intolerance. We have a family history of celiac disease as well as unspecified colitis.

My Daughter’s Battle with Colitis and C-Diff:

My daughter was diagnosed with UC in April 2012. Her symptoms started in Feb. 2012 with bloody stools, stomach pain, back pain, and progressively worsened until the time of her diagnosis.

Incidentally, she had been treated three times with antibiotics for sinus/ear infections in the time span from Feb. through April. Her GI doc put her on Lialda and her symptoms improved quite a lot, but she gradually started feeling ill again over the summer, and in July a test for C. difficile was positive. (She had not been tested for C. diff prior to July).

She’s been on three courses of liquid vancomycin since July, the last being an extended tapering dose. She actually tested negative for C. diff in September, and we thought she had beat this, but then her symptoms returned and she tested positive again in October and is now on Dificid. She’s also taking Florastar (a yeast probiotic that is supposed to be good for C. diff). She’s scheduled for a consult next week with the one and only GI doc in our area who does fecal transplant procedures, and he just started doing them in October for the first time. I think the transplant would be done through endoscopy (in other words, from above, rather than from below).

We want to do everything we can to be supportive and help her beat this infection. I’ve read “Breaking the Vicious Cycle” and would be happy to try the SCD along with her, anything that would help! But I know this has to be her decision. She lives 30 minutes away from home (at college). She got discouraged trying gluten free, dairy free over the summer since she really didn’t feel any different on this diet. I am wracking my brain every day as to how to help her. Any suggestions would be very welcome. My heart goes out to everyone who has to deal with UC. Thanks for this venting area, it’s much appreciated!

written by Cathy

submitted in the parents of UC patients venting area

 

“Hey Cathy, way cool of you for searching out a fecal transplant doc in your area!  If you haven’t already, there’s a great abstract from a recent study titled “Long-term follow-up of colonoscopic fecal microbiota transplant for recurrent Clostridium difficile infection” directly on PubMed, here’s the link : http://www.ncbi.nlm.nih.gov/pubmed/22450732

My current GI doctor was one of the doctors involved with that study, he performs the exact treatment and has told me it has an approximate 90% fix rate for c-diff.  I wish you and your daughter the best, c-diff is most certainly no fun especially along with active UC.  I remember those days back in late 2008 for me, and it was such a relief to finally get past the c-diff when it re-appeared).  Thank you for posting your story, and I wish your daughter some resolution to this before the new year!  Please let us know how things go.”- Adam Scheuer