26 Y/O M - 4 months Diff Free! (Dificid Cured)

[KodiakGT]

Hello,

This is my first post on the site. After reading these forums extensively and getting good advice when I was sick with C-Diff, I thought I should share my story in the hope that it helps others.

For the interested, my story is below, if you just want the summary of my recovery skip this section!

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I caught C-Diff sometime between Nov '12 and Feb '13 (never had GI issues in my life until a food poisoning incident in Nov). I went to ER multiple times in Feb with racing heart and malaise, they took vitals, ekg, and blood work, but nobody suggested or considered C-Diff. After the second ER incident, the GI problems started, cramps, fat intolerance, and feeling nauseous/unwell after eating heavy meals. My private care physician first tried a pepto regimen, thinking it was H Pylori, and then I was tested for food intolerances/allergies using the LEAP mediator release testing. After modifying my diet to avoid my intolerances I still found no relief.

I went to a GI doc, who did a standard stool panel and discovered I had active C-Diff. I was put on a 10 day liquid vanco regimen, which due to poor measuring on my part ran out after 7 days. I relapsed several days later (positive stool test), and was put on Flagyl. After 5 days, the side effects became unbearable, to the point where they switched me back to Vanco. I then had another 10 day course of vanco, another relapse and positive stool test. Then a 14 day course of vanco, another relapse. Finally, they switched me to Difficid for a 10 day course, which felt like it wasn't working at all until about day 5, when I had heavy symptoms, followed by gradual improvement.

My case was pretty unique in that a) I had no antibiotic use that I could point to which caused the C-Diff and b) I never really had the bloody d or typical symptoms of c-diff, it was more pain, nausea, and racing heart after eating.

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4 months and 5 negative PCR stool tests later I'm doing well, and finally feeling like I've beaten C-Diff. I'm still left with PI-IBS symptoms, specifically some bloating and residual fat digestion problems. I've been on S Boulardii twice a day ever since active C-Diff (though recently lowered to once a day), and have been trying different probiotics to see if I can get some lasting improvement. For the fat digestion, panplex 2-phase enzymes seem to help where many other enzymes did not (maybe because of the ox-bile supplement), so that has been a blessing.

I lost 20 pounds (152->132) during my active infection, and am now back up to around 137, but still lower weight than I'd like to be. I'm still amazed how difficult it is to put weight back on while eating healthy so as not to trigger IBS symptoms (particularly as a man with a high metabolism). I have to get at least 2500 calories a day to put any weight on (Ensure Plus and Coconut Oil have been helpful in this regard).

The C-Diff specialist I saw (Dr. Christina Surawicz in Seattle) seems to think it could be another 2-6 months before my post infectious IBS will settle down, so hopefully I'm on the short end of that estimate. I'll be sure to post back in a couple months with an update!

Good luck to everyone out there still struggling, stay strong!

- Kevin

[seekingcure]

Thanks for posting your success story. There are several posters who have recently started on Dificid treatment and I'm sure this will be encouraging to them. It is to me as well, as I am still on Vanco and will be looking for other options if I relapse again. I am, however, leaning towards FMT rather than more antibiotics. After six months of Flagyl and Vanco, I'm just about done with antibiotics. But for the people that don't want to go the FMT route, it sounds like Dificid may be a good choice. Hopefully your IBS will resolve soon and you'll get back to normal.

[getwellsoon]

STANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards.” They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” – formerly” FAQ” – including “Hygiene” “Nutrition” and “Testing.”

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See “CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (See “CDI – Tests.”)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as “Mayo Clinic” and “Web MD.”

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. The best protection (for you and others) is thorough hand washing and good hygiene.

Although we know how devastating C. diff. can be - physically, mentally, and financially - it is not a fund-raising site. We rarely ban posters unless they are verbally abusive, combative or insulting; use inappropriate language consistently; or attempt to sell something through the site and usually issue a warning first.
Again, welcome. Remember, the odds are in your favour.


Thanks so much for posting your CDiff history and cure. I am also one who fought for over a year before finally taking Dificid and beating back the active infection. I was left with IBS and colitis also. It is finally subsiding some so there is hope as you have stated. It just takes time and most people think they still have Cdiff when it is just IBS. IBS can be brutal, as we both know but eventually it subsides and slowly get back to normal or a new normal. I wish you the best and do post back in a few months and let us know how you are doing. Carol

[urrosebud]

Thank you sooo much for posting this!!!! I am just about to finish my 1st 10 day course of Dificid. This is my 3rd time treating. Other two times I was treated with Vanco. I hope this is the end for you and appreciate coming back on here to share the great news!!

Carol- You are most definitely right about IBS and people thinking it's cdiff. I would have to say I am one of those. It is so hard to distinguish between the two and not "freak out." My doc thought that was the reason for my symptoms + colonoscopy however I had a positive sample come back.

Amber

[KodiakGT]

Thanks for the responses everyone! Hopefully Dificid works as well for others as it did for me!

Just wanted to provide a quick update, it seems as though there may be an explanation for my post infectious IBS type symptoms. I went to a Naturopath several weeks ago and provided a stool sample for a GI Effects Microbial Ecology Profile done by one of those mail order labs. The results came back and they found that while my good bacteria have recovered (yay!) and no pathogens or harmful bacteria were found, I do have a pretty intense yeast overgrowth (not Candida though, different yeast). I guess there was more dysbiosis due to antibiotics than I had thought! I have started a regimen of herbal antifungals (the test tells you which ones your specific yeast is susceptible to) and the SCD diet to try to starve it out. I'm hopeful that this will be the next step forward to a full recovery :)

- Kevin

[getwellsoon]

Thanks for posting back. I know most of us have some IBS symptoms post CDiff, some worse than others. I'm glad you did a stool test and you are treating. I hope you have a complete recovery soon. Do post back in a few and let us know how you do with the herbal products. Good luck. Carol

[ppp67]

Interesting.
I lost 15 pounds in three weeks from CDIFF when I was thin to begin with. (150 -> 135).
And it's hard to put the fat back on, what fat there was. Heck, most think that's a blessing.
Eat all you want and not gain weight!
What about heavy duty exercise to put on muscle instead?
They even say exercise (I don't mean pumping iron) is a very good CDIFF treatment.

I've never gone to a natural path. But I always wanted to know what probiotics (if any)
I should be taking as well. I was taking a standard probiotic while taking clindamyacin but
still got CDIFF anyway. I was also eating lots of sugar, and coffee at the time.
Now I've given that up, eat alot more yogurt and kefir, and user s.boulardi and a different probiotic.

For me, upping the s.boulardi in the early stages of recovery helped alot. But I wasn't sure if that
it was good to use long term. I guess any advice would be helpful. I also wonder if s.boulardi contributed
to your yeast problem. Not sure. I'm easing off it now though, replacing it was another probiotic capsule.

[Bobbie]

You need to check with your doc. re. s.boulardi. I was on it for two years many years ago but it didn't help or harm me. It and probiotics help some people but don't do much for others. There is a lot of information about both on the site. Do a search.

Clindamycin is a "bad one." It's the first antibiotic linked to C. diff. Try to stay away from antibiotics in the future - unless you absolutely have to have one -- and sometimes they are necessary.

Best of luck. "Hang in there." You will eventually recover. If you are not already seeing a GI or an ID, it might be a good idea to do so.

[KodiakGT]

Hello everybody. I just wanted to check in and provide another update.

12 Months after my bout with C-Diff and I'm still going strong. Believe it or not, I'm still suffering from post infectious IBS, but I'd say that things have been improving recently, and my diet is starting to resemble something more normal again. I think the hardest thing to deal with post Diff has been the anxiety and the fear that somehow it will come back (particularly since we never linked my infection to a specific antibiotic treatment). I've started to do some relaxation exercises, drink tea, and listen to hypnosis tapes for IBS at night, all of which seem to be helping to reduce my stress level.

For all of you still dealing with issues, keep fighting and know it will get better!

- Kevin

[Bobbie]

Thx, Kevin. I'm sure you will continue to improve - I did. Thx for checking in and giving hope to others.

[obesemuffins]

Thanks for posting Kodiak! I hope to one day be cured as well.

I'm currently on day 7 of liquid Vanco (4x a day) but still seeing some symptoms of loose BMS. C diff or IBS? Who knows.

Did you have any side effects from your dificid treatment?

[getwellsoon]

Dificid gave me gas and I just didn't feel well taking it. That said, it is what finally cured me after so many courses of Vanco. Loose mushy stools are very likely with Vanco also. Ask the Dr. for Questran to help firm up the stools or ask if you can take pepto, both helped me. You will be cured one day, don't give up hope. I suffered for over a year before I was cured and now over 2 yrs. later I still have IBS. Its not an easy road but its better than full blown Cdiff. Hang in there and please let us know how you do.

[Bobbie]

Congrat. and best wishes for a continued recovery. Thanks for posting and keep in touch. How did you find your naturopath? Were you 100% happy with his/her care?