UC and Now Have C Difficile

Intro:

I have had UC for the last 32 of my 58 years. My last scope was in 2012. Even when I am assymptomatic the lining of my colon shows significant inflammation.

Some more about Cheryl:

I love to sew and garden.

Her Story:

I am 58 and have had ulcerative colitis for 32 years. I was diagnosed shortly after my first child was born and was found to have pan colitis on my first colonoscopy. I have several flares a year that have responded to a tapering dose of prednisone. My worst flare was 20 years ago after my third child was born. I had to be hospitalized for 10 days, on IV steroids, bowel rest and TPN. The doctors suggested I have a total colectomy but I did go into remission and have been fairly high functioning.

I am an RN and work part time on a very busy surgical unit. My husband of 36 years and I have raised 3 children. I am a good cook and house keeper. I also am a decent seamstress having made many of my own clothes and my children’s. Until recently, I shared my UC diagnosis with very few. On the occasion that I have told someone of the diagnosis, they are usually very surprised since I appear to be pretty healthy on the outside. My GI doctor has had me on several maintenance medications like Asacol but they never seemed to keep me from having a flare.

My body shows signs of long term steroid use sagging and crepe skin. I decided I needed a tune and had some elective plastic surgery last month. My plastic surgeon prescribed Clindamycin after surgery and I didn’t even think to question it. Two weeks after my surgery I thought I was having a UC flare. I started my prednisone but it didn’t wipe out my symptoms like usual. After talking to my GI doctor I realized I had created the perfect storm for a C dif infection. Sure enough my test was positive. I am now on Flagyl and scared to death that I am not going to recover from this. I asked my doctor about fecal transplant but he said it us to early to consider that. I have read that the fecal transplant is 90-100% effective for C dif and the mortality rate of people with UC and C dif is high. Anybody out there have a similar experience? If so, what treatment worked.

Medications:

Tapering prednisone dose,
Asacol
Cortisone enemas

written by Cheryl

submitted in the colitis venting area




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c-diff, clindamycin, flagyl

11 Responses to UC and Now Have C Difficile

  1. maddy September 10, 2015 at 1:38 pm #

    I had c. diff almost 20 years ago.It kept coming back. Yes, it was awful. Four doctors and almost 5 months later when it kept recurring, I found a wonderful female g.i. doc. She told me to take the simplest of the drugs, which was Flagyl for the usual 2 weeks, and asked me if I thought I could tolerate 1c. (3 times a day) of plain, 0% fat, organic yogurt (Stoneyfield or similar). I idid that and felt better within a few days. I kept up the yogurt for months. The thought behind it was that our guts are designed to get rid of bacteria. But by bombarding the gut with the good bacteria from the probiotics that enough would get through to squelch any furthering of the c. diff blossoming. There are so many very strong probiotics in powder form. Hopefully, you should be able to bombard yourself with those now. Separate the drug and the probiotics—some say 1 hr before or 2 hrs after while others say 2 hrs and 2 hrs. Best of luck to you.

  2. Polly
    Polly September 10, 2015 at 6:01 pm #

    Oh Cheryl,

    I am SO SORRY to hear about your current troubles. I highly, highly recommend seeing a GI Doc that specializes in C Diff patients or seeing an infectious disease Doc. Since you have UC AND C Diff, your case is more complicated, so seeing a specialist will really help you…
    I am going to copy and paste what the GI Doctor at the University of Minnesota wrote me earlier this year when I had C Diff: ” My first suggestion at this time would be to change you from Flagyl to Vancomycin. Flagyl is generally a poorly tolerated antibiotic and there is ~ 30% resistance to it among various C. difficile strains. It is chosen first only because it is cheap. The standard practice is to change to vancomycin after 3 days if Flagyl is not working. Vancomycin can be compounded in liquid form by some pharmacies (all hospital pharmacies), and in this form it is comparable in price to Flagyl. If your insurance covers Vancomycin capsules, this shouldn’t be an issue at this time.”

    The GI’s at the University of Minnesota don’t even try Flagyl for those with IBD and C Diff. They go straight to Vancomycin. So if I were you, I would see about getting switched to Vancomycin, and if you’re allergic to that, switched to Dificid.

    I had a super severe case of C Diff earlier this year, and it did respond to Vanco, and I was on Vanco for about 3 solid months, tapering off, but it did not get rid of the C Diff, so about a week after ending the Vanco taper, my symptoms came back. At that point I did qualify for a fecal transplant and got FMT at the University of Minnesota on June 8.
    The FMT DID work and it got rid of the C Diff, but it took time. It was about 6 weeks before I started seeing any difference… but you just have to be patient and let things balance out.

    Probiotics between your antibiotic doses are really important too!!! Saccharomyces Boulardii is one that people should take when they have C Diff… I tried the Jarrow brand and it did nothing, but then I switched to the Ortho Molecular brand, and it helped a TON.

    C Diff is rough, I’m not going to lie… make sure to REST… take a leave of absence from your job… see if you can get a family member (spouse, sister, mom, whoever) to be at home with you and cook and clean for you while you’re at your worst. I was down to 87 lbs at my worst and I’m 5’7″, so I was just skin and bones… if you need to go to the ER and get IV fluids, go and do it, no sense in fighting it. The dehydration from C Diff is unbearable. But you will be OK! Drink bone broth, stay hydrated, and rest.
    My case of C Diff was classified as “severe” and it knocked me out for about 4 months. It is now September and I am C Diff free and I’m finally starting to feel like a human again. I’ve gained 30 lbs and I’m back to work… just saw my GI last week, all is looking great and I don’t have to go back now for 6 months.

    Sending lots of energy and healing vibes your way,
    Hugs from Minnesota,
    Polly

    • Cheryl October 5, 2015 at 1:55 pm #

      Polly, were you symptomatic for C dif at the end of the 3 months vancomycin course? I took Flagyl first and got better but symptoms came back and I tested positive again within days. I have now been on oral vancomycin for 2 1/2 weeks and feel great with no symptoms. I have been taking probiotics. Just wondering if the C dif is being totally eliminated or just being controlled until I stop the vancomycin. Thanks, Cheryl.

      • Polly
        Polly October 8, 2015 at 1:40 pm #

        Hi Cheryl,

        I felt GREAT on the Vancomycin. My symptoms were totally controlled and my appetite was back… all was great!!! About 1 week after going off the Vanco I started getting stomach pains again and then the D was back… I went back in after being off the Vanco for 2 weeks, and sure enough… positive for C Diff!!! It was the stomach pains that really worried me and that’s why I went in.
        I should say that my GI had me on a super aggressive Vanco treatment, since my C Diff was so severe… I was on it 4 times a day for a month… then 3 times a day for a few weeks, then twice a day, then once a day… and then I was on it every other day for like a month… I think the whole treatment and taper was like 3.5 months, so my GI was SHOCKED when I tested positive for C Diff after going off the Vanco.

        • Cheryl October 8, 2015 at 5:22 pm #

          Hi Polly, I was afraid you were going to say that. I am also on a long tapering dose of Vanc. I fear my symptoms will come back soon after I stop taking it. Crossing fingers.
          Thanks again, Cheryl

  3. Cheryl September 10, 2015 at 8:16 pm #

    Thank you so much for your responses. My symptoms have greatly improved. I just took my last dose of flagyl. Thank goodness I did not have bad side effects from the drug. Polly, your case of C dif was awful and Maddy I am praying mine does not come back like yours did. My C dif symptoms were actually not as bad as most of my UC flares. Of course my symptoms could have been masked by the prednisone I started when I thought my symptoms were just from a UC flare. I am taking 2 probiotics. Align, which was recommended by my GI doc and Digestive Advantage, which I saw recommended on this site. I have been resting. I have not gone back to work since my elective surgery 6 weeks ago. My husband and I have s long trip planned that my GI doc has told me not to cancel since I seem to be doing better. He said to restart flagyl if my symptoms come back. I am not to sure this would be the right thing to do since l have read that it should not be used for recurrence. Seems like the medical world is way behind on this. Very frustrating but not surprising to me as I am a nurse. The obstacles to get the FMT are driving people to DIY. Polly, do you have UC also? I have seen plenty of literature about FMT to treat C dif but not much about it’s use when UC is also present.
    Hearing from others with these problems has really been helpful.
    Thank y’all, Cheryl

  4. Polly
    Polly September 11, 2015 at 12:44 pm #

    Hey Cheryl,

    Yup, I am also a UC warrior. I was diagnosed about 4 years ago. I’m glad the Flagyl worked for you and that you’re feeling better already!
    Have a wonderful time on your trip!!!

  5. Bev September 11, 2015 at 2:32 pm #

    I had reoccurring c-diff which is part of the reason for my disability. If your dr has not prescribed “VSL#3 DS”. This is a probiotic 900 billion bacteria pac x 2 a day.
    I was actually put on this after my fecal transplant because I was in a flare at the time.
    I hope you get everything under control!

  6. Cheryl September 11, 2015 at 6:30 pm #

    Thank you, Bev. My doc did not prescribe that but he did tell me take a probiotic. I am currently taking Align probiotic in am and Digestive Advantage probiotic in the evening. I plan to ask my doctor about VSL on Monday As a nurse I have cared for many people with C dif. If I don’t get rid of this I won’t be able to work either. Did the FMT cure your C dif?

  7. Cheryl September 16, 2015 at 5:57 am #

    Thought the flagyl had worked but 4 days after 10 day course C dif symptoms were back. This time with more watery stools and more frequency. I immediately got retested positive for the C dif. Now on vancomycin po. Started yesterday. I already feel some better. Still with diarrhea but frequency decreased and I slept through the night. Have been checking out all the posts of what works for others. Interesting that so many supplements recommended are not allowed on the SCD diet. I see my GI doc again today. Disappointed I wasn’t put on the vancomycin first. Yes the cost is more but now I have wasted time and probably just killed off the weaker C dif while the stronger multiplied. Really like my GI doc and have been with him for 20 years. i asked about Dificid since the recurrence rate is less with it but the guidelines still say to use vancomycin first. Deciding wether or not to go through with big vacation plans.

    • Adam
      Adam September 16, 2015 at 2:13 pm #

      Good Luck Cheryl,
      For my first go round with C-diff back in Nov 2009, I was prescribed vanco first and it took are of it, bit it came back a month later. Next, took Flagyl and that wiped it out for good. Works different for all, so wishing you the best. Sounds like you’re on the right track! Keep us posted,
      Adam

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