C Diff Struggle

Intro:

Dean, 22, Ulcerative Colitis since February 2015.

Constantly see to be fighting this and can be so frustrating.

I have had to call in sick to work a lot the past 2 months because of c diff and it’s so annoying. Thankfully I work in a pharmacy and my employer is very understanding:)

Some more about Dean:

I’m from Ireland, just turned 22 today :) have UC since February 2015

Symptoms:

Had serious cramping the last few weeks with trips to hospital.

C Diff Struggle

Hi guys,

Sorry I haven’t been keeping you updated the last while, I’ve had a rough few months.

So I had my 3rd infliximab infusion at the end of May this year. 3 days after the infusion I had finally found remission.

Unfortunately it didn’t last very long :( after about 2 weeks my symptoms had worsened. I was having severe cramps watery diarrhea throughout the day and no energy. I upped the dose on the prednisone for a week and still no difference so had

no other choice to go back to hospital.

When in hospital it turned out I had picked up c diff. I was put on vancomycin for 10 days and after the first 3 days I was symptom free again. And to hear the word remission from my doctor was such a relief! A few weeks back my symptoms started again but I was having good and bad days which was strange, but mostly bad ones. I was running to the bathroom nearly 8 times a day and had severe cramping again. To be honest the bathroom breaks I can deal with but the cramps are just unbearable at times. I had to head back to hospital to find out I had picked up c diff again :( so I said great few days of vancomycin again and I’ll be fine.

But no I was wrong I’m on my third week of vancomycin and only now I’m finding remission again with solid stools 2-3 times a day and pain free. I found c diff really hard to fight this time round considering my immunity is so low from 6-mp and infliximab. I’m very very tired in the mornings and also feel nauseous but I’m finally coming around. Personally I wouldn’t wish for anyone to pick up c diff as it was an awful experience for me. I’m now tappering off the pred so hopefully I can get off them this time round. If anyone would have some tips on how to give my immune system a nice boost id really appreciate it! I have started taking wheatgrass and find that is helping my symptoms already :) thanks again for listening guys it’s nice to share my story with others especially when my family and girlfriend don’t have UC it can be extra hard for them to understand the experience we go through!

Medications / Supplements:

I have started taking wheatgrass powder mixed with water and find it really helps with all round symptoms.

written by Dean Murphy

submitted in the colitis venting area




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17 Responses to C Diff Struggle

  1. Adam
    Adam August 23, 2015 at 9:23 pm #

    Hey Dean,

    One thing that you might do is talk to your doctors about prednisone and the effects it may have on c-diff when c-diff is out of control.

    I have heard some differences of opinion on this, where some GI’s have said that there is no interaction or problem with taking steroids to help UC symptoms while you are also dealing with C-diff, and I have heard the exact opposite stating that prednisone and C-diff are a bad combination (meaning that prednisone can make c-diff worse). So again, I’d speak with your doctors about that to try and find their opinion.

    Also, you may want to consider the fecal transplant route for helping to eliminate c-diff. In an interview we did with two doctors a long short while ago, there was quite a bit of mention regarding this. THere are also many pub med published studies about c-diff and fecal transplants and the curing potential that FMT has on that.

    https://www.ihaveuc.com/fecal-microbiota-transplant-questions-and-answers/

    Ok buddy,

    Hang in there and thanks for sharing your story,
    Adam

    • Dean Murphy
      Dean September 11, 2015 at 10:11 am #

      So I met with my GI this week and he is happy to go ahead and do a fecal transplant on Tuesday! I hope this will take away the sickness feeling loss of appetite and completely no energy. Anyone else been having these symptoms? I’ve finally been able to come off the pred off it about 4 days now. Anybody know how long it stays in your system for or how long it will take for all my hormones to just reach normality? I’ve been on the pred since February so had a good 6 months of it :( I’m hoping Tuesday will go ok. I’m having the fecal transplant through a colonoscopy! Having c diff for 3 months is just horrible and makes me miserable if I’m honest I’m just drained and can’t get out of bed in the mornings

      • Polly
        Polly September 11, 2015 at 1:16 pm #

        Hey Dean!!!

        I’m so happy to hear that you’re getting the FMT. And FMT via colonoscopy, hurray!!! When I had C Diff I had no appetite at all, so once the C Diff is gone, you should get your appetite back. My Naturopath put me on DHEA to help my body wean of the prednisone. Maybe you want to look into it? Prednisone basically shuts down your adrenals and does their functions… so when you get off the prednisone, it’s really hard for your adrenals to get turned back on, so DHEA helps with that.

        Best of luck to you, it’s almost over!!!

        Some people feel better instantly, but that wasn’t me, so just be prepared that it might take awhile before you feel better… for me it took about 6-8 weeks. But the FMT got rid of the C Diff, and that’s all that matters! :)

        • Dean Murphy
          Dean September 23, 2015 at 10:09 am #

          It’s been over a week now since I’ve had my FMT. But no improvements. My bowel I feel as worsened since I had the colonoscopy with really loose stools and watery diarhea.snd very bad cramping. My appetite came back for a few days but it’s not great now again. My back passage is now sore the last few days as well so I felt I was flaring and started taking pred again. I’m having some solid stools since then. I also started taking the pred rectal foam to help with the pain. Not sure what’s happening with my insides at the moment :( all I want now is to get better

  2. Polly
    Polly August 24, 2015 at 9:36 am #

    Hi Dean,

    I’m sorry to hear about your battle with C Diff. I had a very severe case of C Diff earlier this year that knocked me out for about 4 months and I was down to about 43 kilos. Scary stuff, I wouldn’t wish C Diff on my worst enemy!!!
    Are you taking probiotics??? This one and this brand have been very helpful to me: http://www.shop-orthomolecular.com/store/ortho_saccharomyces_boulardii.html
    I take 4 pills a day. I agree with Adam… get a fecal transplant (FMT) if you can. As you are in Ireland, I think FMT is much more accessible there than it is here in the USA. If you’re having pain from the C Diff, you can try some essential oils topically like this one: http://www.doterratools.com/documents/DigestZen_Digestive_Blend_Product_Information_Page.pdf

    I really hope you can get an FMT. So many strains of C Diff are nearly impossible to kill with antibiotics… I was on Vancomycin for 3+ months and it didn’t do anything… then I was switched to Dificid, which didn’t work either… cheering for you… self-advocate to get an FMT!!! Hang in there!

  3. Rachel August 24, 2015 at 12:06 pm #

    I feel for you Dean. I’m on my second round of vancomycin trying to battle c-diff. One thing that helps a bit is taking a probiotic as well as the antibiotics. Just make sure you take the probiotic a minimum of 2 hours before/after the vancomycin. I have been doing that and it seems to help lessen the symptoms. Wishing you a speedy recovery man!

  4. Melissa Lawler August 24, 2015 at 1:48 pm #

    C Diff is the worst. I have been hospitalized for it 3 to 5 times a year for the last four years. I received a fecal transplant 2 weeks ago and I am crossing my fingers that it worked.

  5. Jennifer Schaeffer
    Jennifer August 24, 2015 at 2:03 pm #

    Hi. I’m supposed to be “cured” of my recent c-diff infection. Did 2 weeks of the Flagyl. Been off it for 5 days now and my symptoms are back. And you’re right – cramping is the WORST!!! Just sucks. Hang in there – we can get through this together!!!! Jennifer

  6. Polly
    Polly August 24, 2015 at 2:54 pm #

    Hello fellow C-Differs…

    Jennifer, if your symptoms are back already, based on my personal experience, my guess is the C Diff is still there… I would go in and get a C Diff test ASAP. Also, for people with UC, Vancomycin is more effective against C Diff than Flagyl…
    My advice to you is to find a Doc (GI or infectious disease Doc) that specializes in C Diff. I will copy and paste something here from a C Diff specialist Doc at the University of Minnesota (from an e-mail he sent me): 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.

    So I was fortunate enough to get an FMT this June (after multiple recurrences of C Diff and being on antibiotics for about 4 months…). Melissa… don’t give up!!! You have to be patient and let the good bacteria grow and do their thing. I was SO discouraged after my FMT, as I felt the same, still had symptoms… I was convinced that the FMT did not work… but it did!!! It takes time!!! It was about 6-8 weeks before I started feeling better, plus I have a pretty wicked case of post-infectious IBS since I had such a severe case of C Diff and it basically destroyed my insides… my guess is you will probably have post-infectious IBS too, since you had multiple cases of C Diff spanning a large amount of time. My primary care physician prescribed VSL#3DS (probiotic) and it’s really helped with the post-infectious IBS, so I would recommend trying to get a prescription for that if you can.
    I was really hoping that the FMT was going to be a “miracle overnight cure” but that’s just not the way it works… give it time, hang in there!!!
    Hugs to you all, C Diff is The Worst!!!

  7. Melissa Lawler August 24, 2015 at 3:34 pm #

    I have been so sick for the last two weeks. I finally have normal stool today and my next c diff test is Wednesday. I haven’t given up! Doc says she will do as many fecal transplants as necessary to keep me alive.

  8. Dean Murphy
    Dean August 25, 2015 at 1:16 am #

    Thanks for the tips guys really appreciate it. So I’ve finished my course of vancomycin now since Friday and thankfully I feel like c diff is gone. I have two normal stools in the morning and that is it. The last couple of weeks I’m having new symptoms wear I feel very nauseous, but only in the morning when I wake up. I taught it might be a side effect from the vancomycin, but it’s still happening. This morning was the first time I actually had vomited and it felt awful. Anybody have any idea what this might be???

    • Gail August 25, 2015 at 5:33 am #

      Hi Dean, i would strongly urge you to get a really good food intolerance test done. In other words, not just a skin prick allergy test but a blood test. I don’t know what’s available in Ireland but probably you have to go to a naturopath. It will be money well spent. If you do a quick internet search, you will find that the incidence of celiac disease is extremely high in the irish population. Gluten intolerance is a spectrum from mild to severe and is still not diagnosed very well. Dairy intolerance often goes hand in hand with it, even if it’s only temporary. The resulting inflammation causes many other symptoms in other organs, including the skin. In fact, some people don’t even have GI symptoms. It makes me sad to read of all the people suffering so much. Please keep an open mind about food, keep researching and be your own advocate.
      Best of luck to you.

  9. Maggie August 25, 2015 at 1:44 pm #

    Hello there. I take diatomaceous earth every morning on an empty stomach. It pulls out bad bacteria and viruses out of the body and is all natural, no side effects. You find it on the internet, plus more info about it. It’s not very expensive. It mixes easy with plain water or any juice, just a little and drink it up. I take it nearly every day. Hope this helps some. Also, do take really good probiotics as mentioned before. I actually make my own kefir, which is loaded with probiotics. I still get flare-ups but they aren’t as bad and I’ve never had any bad bacteria except an over abundance of yeast. That’s why I started the earth. It also pulls out any heavy metals you have in your body. Good luck!.

  10. Cheryl September 15, 2015 at 10:08 am #

    Dean, did you have the FMT? I Have completed course of flagyl and still c dif positive with symptoms. Now on po vancomycin. I pray that you are still better. Doc won’t discuss FMT until vancomycin doesn’t work. Scared and probably canceling a long planned trip to Italy with my husband.
    Cheryl

    • Dean Murphy
      Dean September 15, 2015 at 12:19 pm #

      I had FMT today so now I have to wait and see how I feel I guess. Not sure how long it takes for symptoms to improve. Fingers crossed

  11. Melissa Lawler September 15, 2015 at 10:15 am #

    I have failed my second FMT and am now looking at colectomy.

    • Dean Murphy
      Dean October 7, 2015 at 2:07 pm #

      So my FMT worked my c diff test was negative. However I’m still having symptoms the only thing that has improved is my appetite and the nausea. I’m still having cramping and diarhea with about 4-6 bowel movements a day. My GI wants to hold off on putting me on steroids for now as he feels my bowel will improve but I’m struggling really

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