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

 

Adam iHaveUC colitis

“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




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c-diff, Florastar

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

  1. Stacy
    stacy November 8, 2012 at 6:11 pm #

    Hi Cathy! feel for you and your daughter. i never had cdiff but i did have a fecal transplant for UC and it has been my GIFT for a great remission – so as it has proven to be optomal for cdiff it could also help with the genereal healing of your daughters colon for IBD too. Best of luck. Stacy

    • Cathy November 9, 2012 at 9:48 am #

      Stacy,

      I am so happy to hear of your great result with the fecal transplant for bringing your UC into remission, that is just awesome and is really encouraging to hear! The more I read about the transplant procedure the more positive things I learn. This is great news! I wish you all the best.

      Cathy

  2. Cathy November 9, 2012 at 9:44 am #

    Adam,

    Thank you so much for your kind reply and for including the Web link to the fecal transplant study. I’ve just read it and it sounds really encouraging! I will be sure to let you know how things go with my daughter and I’ll pass along your good wishes to her. Thanks again for all of the work you do on this Web site, it is so great to have the support.

    Cathy

  3. Gail November 9, 2012 at 9:57 am #

    Hi Cathy, I too have been gluten free for a year and a half and dairy free (cow’s milk – I do drink some goat milk and eat goat cheese) for about 8 months. I will never go back to either. I believe I am gluten intolerant but never received a medical diagnosis. I have a son with ulcerative colitis currently on Remicade, since the summer. He is married with children of his own, so I am not involved in his medical care. My extended family has numerous other autoimmune diseases and/or symptoms related to gluten but, so far, no one else really believes it’s food related. It’s too bad your daughter got discouraged with a g/f, d/f diet. I would guess that it might be because she was getting “glutened” unknowingly. There is gluten in so many things that we would never dream of and if you don’t read every label, or prepare all of your own food, you may not know what you’re eating. Also, yeast can take over after antibiotic use so, as Bev on this site always says, take probiotics. I also used the same one that Bev recommends, the 50 billion Ultimate Flora by Renew Life, for about 5 months while trying to get cleared up. I still take a probiotic but simply switched to a less expensive one but that was only my choice – I would absolutely stay with the Ultimate Flora if necessary. I hope your daughter will read some stories on this site, do some research and give the diet a try again. It requires a change of thinking about the way we eat but I’m convinced it’s worth it. Good luck to both of you.

  4. Cathy November 9, 2012 at 4:06 pm #

    Hi Gail,

    Thanks for the information and encouragement! I take a probiotic too (Dr. Murray’s), but I’m glad to have recommendations about different kinds/brands. It took me several months to feel comfortable with the GF diet. It is definitely worthwhile, I will never eat gluten again (don’t want to go back to feeling awful!).
    I also don’t eat much dairy at all, but then I read that the specific-carb diet allows some cheeses and homemade yogurt (homemade to kill the lactose). One thing the allergist told my daughter (she tested negative for all food allergies) is that lactose would probably not be good for her UC.

    The autoimmune diseases seem to be a mystery in so many ways, why they occur, how to treat, what triggers them to start, what triggers a remission, etc.

    I hope things go well for you and your son and family. Thanks again for the support!

    Cathy

  5. bev November 9, 2012 at 6:36 pm #

    Cathy..

    Hmmph…antibiotics, huh? The culprit!! Time and time again, UC is correlated with antibiotic use. Some of us simply can’t handle them, I think. Same thing in my background. Lots of antibiotics.

    PROBIOTICS…are a must!! I am in full remission just with them and L-glutamine. 9 months and counting…really! No meds at all because I can’t take meds. My body seems to ‘hate’ them.

    Don’t stop them ever. Don’t bail out too soon if you think that they are doing nothing. Probiotics for life!!

    Bev:)

  6. Cathy November 12, 2012 at 1:28 pm #

    Bev,

    I wish I could turn back the clock and strongly encouraged my daughter to not take the antibiotics for her sinuses, except for the one ear infection she had she probably would have needed them because she had such severe ear pain. But maybe that would have cleared on its own eventually? Hard to know.

    I actually had an illness (sinus infection that turned into a brain abscess) when I was 12 years old (way back in the 1970s) where I had IV antibiotics for about a month straight, and wonder if that led to some of my gut issues later in life. (And this probably made me a bit paranoid about sinus infections and wanting to over-treat them in my kids!)

    Thanks for reaffirming my belief that probiotics are a good thing. That’s awesome you’re in remission with no meds!

    Tomorrow is our big MD appointment for the C. diff transplant clinic, so I hope that they will deem my daughter to be a good candidate for the procedure. She’s been on antibiotics for the C. diff now since July, which is too long. I just wonder if the antibiotics she’s been on for the C. diff (vancomycin and Dificid) are wiping out the good bacteria in her gut as well as the C. diff. It’s weird that they prescribe an antibiotic to treat something caused to antibiotics. Go figure.

    Thanks so much for your support. Take care,
    Cathy

    • bev November 12, 2012 at 3:43 pm #

      Cathy..thats’ exactly what I always think! Every time I hear about c-diff and the use of antibiotics to treat it, it just floors me!

      I had pneumonia two years ago and had to take the strongest antibiotic I’ve even been on…called avelox…and thus began the absolute worst flare of my UC life. When I was unable to get out of that flare with drugs, I turned to that 50 billion strain probiotic, not thinking that it would even do anything. It saved me life! Thank goodness I tried it…I was considering surgery at that point!

      Cheers, and I hope everything goes wonderfully for your sweet daughter at the transplant clinic. Please keep us all posted!

      Bev:)

  7. Karen November 12, 2012 at 9:31 pm #

    The two probiotics that seem to help c diff are saccharomyces boulardii and lactobacillus GG. There are other forms of lacto but the GG is the most effective. It’s found in Culturelle and maybe other products, I’m not sure. The sacromyces is found in Florastor I believe. I wish you the best with the transplant.

  8. Cathy November 13, 2012 at 9:00 am #

    Karen,

    That is great to know, thanks for sharing the information about the probiotics. I had only heard about the Florastor, not the lactobacillus GG, for C. diff.

    Thanks for the good wishes, they are much appreciated!

    Cathy

  9. Cathy December 4, 2012 at 8:09 am #

    Hello all – I wanted to send an update regarding the fecal transplant procedure:
    My daughter finally had the fecal transplant November 27th, one week ago today. It took a little while to get a donor lined up, as her Dad was going to be the one, but he tested positive for C. diff. himself (asymptomatic). Her brother turned out to be next in line as donor and all of his tests came back negative, but it took several days for all of the testing to be completed that they had to do on him.
    The first couple of days following the procedure her tummy was upset (she thinks partly from the prep – similar to colonoscopy prep where you have to drink the horrible salty liquid to “clean you out”) But, the good news is she’s been feeling better and better since then. She actually went back to college the day following the procedure and got through her day at school. When I asked her yesterday how her tummy was feeling she actually said “OK” (!) So, we hope for this trend to continue! We are so very thankful that she was able to finally receive this procedure. Time will tell whether it proves to be the ultimate cure for C. diff (and maybe her UC as well!), but so far so good!

    Thanks again for your support.

    Cathy

    • Laura January 28, 2013 at 3:25 pm #

      Hi,
      How is your daughter doing? My doctor never even discussed this with me and I am on my 2nd C-diff, back to back! Only a week in between and back in the hospital. The meds are awful and I’m so disgusted! I feel nauseous all the time. I’m sick of taking pills. I stopped probiotic cause I read they may be making me sick too. I’m afraid of everything.
      Please let me know any info you can. I hope your daughter is still doing well,, :-)

      Laura

  10. Cathy January 28, 2013 at 4:01 pm #

    Laura,
    I’m so sorry to hear you’ve been dealing with back-to-back C. diff along with hospitalization. Your infections sounds similar to my daughter’s, in that she had back-to-back infections as well, with many weeks of liquid vancomycin and then another antibiotic (pill) to no avail. However, she never was ill enough to have to be hospitalized. She did take Florastor for several months as well, which didn’t seem to make things worse (she now is taking Culturelle, a little cheaper, not sure if it is as effective as the Florastor).
    As far as how she is doing now, she’s much better than she had been : – ) However, she tells me her symptoms are not perfectly gone, as she still has some diarrhea and “unsettled” stomach much of the time. But she’s able to get on with her life and is away at college, managing fairly well. So, overall very glad she went through with the fecal transplant in November. I would think you’d be a candidate for a transplant as well, esp. with the fact you had to be hospitalized with back-to-back C. diff infections. I sure feel for you and don’t blame you one bit for your frustration!!!!
    Please do not lose heart, OK? The way our medical system is set up, we really have to be our own advocates and sometimes that means really being a fighter to get what you need! I hope you can find a doctor in your area that can check into the transplant idea for you. If there is anything else I can do, please let me know. I can always offer moral support, for sure!
    Cathy

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