Struggling with multiple relapses

[Footie97]

Hello all

I am a 50 y/o male who was diagnosed with C diff while in the hospital for a 3rd abdominal surgery since Easter 2020. Short version: I had a colon perforation due to Diverticulitis and lost 12 inches of colon and had a colostomy for 3 months. I had a colonoscopy and colostomy reversal at the end of June 2020. I had been on it IV antibiotics While in the hospital and discharged after 1st surgery on Cipro and Flagyl. At my second surgery I developed severe pain and uncontrollable D and diagnosed with C diff and placed on Vanco 500 mg by mouth and Flagyl IV. I was discharged on Vanco and Flagyl.

I finished 10 days of antibiotics with no improvement of D, bloating and abdominal pain. I was retested and was still + for C diff 4 weeks after 1st round of antibiotics. I took a second round of Vanco for 10 days again with no improvement in symptoms. 4-5 weeks later I was tested a 3rd time and still +. I am 5 days into first round of Dificid (10 day course). I am still in bathroom 5-10x/day with D and gas/bloating.

I am seeing my ID in 4 days to see where to go from here. I have spent a lot of time reading on this forum and other resources and realize that there are options (tapering doses, FMT) but I am at the end of my rope with my health and 2020.

Sorry for the long post. Any advice/support is appreciated

Clint

[Ali-Mar]

Hi Footie, I am so sorry to hear about your struggle, having multiple surgeries and in addition to all that contracting C Diff, I cannot imagine how devastating that must be.

I contracted C Diff on Feb 4, went on untreated for 5 weeks. I was on Flagyl for 8 days it didn't help so we switched to Vanco for 10 days. I relapsed 5 weeks after completing the Vanco and when on Dificid taper, . Dificid taper has a very high success rate it works for around 95% of people, based on the following doctors. I also read on this forum that it works for most people, but unfortunately, it didn't for me. I relapsed 2 weeks after completing the taper. I had FMT via Colonoscopy on July 14th, which is 11 weeks ago. I am still having a lot of GI issues and not near back to normal but had two negative tests so far, the last one was 3 weeks ago, and don't have D and M anymore, I am much better

https://www.hcplive.com/view/best-pract ... -difficile


I hope the Difcid will work for you, I would ask for Dificid taper, but not the taper outlined in the above video , see the following link for a small study of 12 or 13 patients , all curred.. The took 2 pills per day for 10 days, then one pill per day for 7 days and one pill every other day for 26 days

[Footie97]

Ali-Mar
Thanks for your story, I am glad you have tested negative. Sorry you are still having gi issues.

I will discuss with my ID and GI Dificid taper, thanks for the advice on how to taper. I have seen a few different taper strategies. I hope you improve!

Clint

[beth22]

Hi Clint and welcome to the site. Please read the first forum for new posters where you will find more information.

I agree with Ali-Mar about the Dificid taper. It has worked for many and that is most likely what I would do. I think more doctors are doing that these days. Run it by your ID when you meet with him or her.

[Footie97]

Hello

I saw ID and we decided to do a long taper on Vanco. His regimen is 500mg 4 times per day for three weeks then 250mg 4x/day for three weeks then 125mg 4x/day until one of three things happen: symptoms resolve, I die or I can get FMT.

I do have access to 2 drs in the area who do FMT but as most know it is not currently available.

Hoping for resolution or FMT to come first!

Clint

[roy]

Keep in mind that c.diff might not be the only cause of your illness.
Drs are far too willing to look at a test result and miss the real reason for ongoing problems.
You had colon problems BEFORE c.diff so furthur investigation is needed.
If it is c.diff causing symptoms it would be very unusual if does not respond to that amount of c.diff meds.
Normaly the meds resolve symptoms within 5 days and ongoing problems only arise after the meds are finished and symptoms return.

[Footie97]

Roy
Thanks for your input, I agree with the need for more investigation and I am working with GI also to rule out other causes.

I seem to do ok while taking meds but as soon as I stop I am back to frequent trips to the bathroom.
Clint

[roy]

In your first post you said " finished 10 days of antibiotics with no improvement of D, bloating and abdominal pain. I was retested and was still + for C diff 4 weeks after 1st round of antibiotics. I took a second round of Vanco for 10 days again with no improvement in symptoms. 4-5 weeks later I was tested a 3rd time and still +. I am 5 days into first round of Dificid (10 day course). I am still in bathroom 5-10x/day with D and gas/bloating"
If that's correct and still the same during the current course seek another oppinion.