Six Months Out from 5 relapses

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
midway
New User
Posts: 20
Joined: Mon Jul 11, 2016 7:34 pm

Six Months Out from 5 relapses

Postby midway » Sat May 13, 2017 3:21 pm

I'm so happy to be posting in this section of the forum. While I was dealing with a recurring CDI, I often felt beaten down, hopeless, and downright crappy (pun intended). The success stories helped to give me hope, but I also appreciated seeing that every case is unique. What might be a "miracle cure" for some is a total disaster for others! I'll avoid the play-by-play description, but I want to describe my unique challenges as well as the treatment that worked for me.

Some background: I am a quadriplegic. That means that I am 100% wheelchair-bound and I need help from caregivers for all of my personal care. Normally my bowels are very well behaved by going on a consistent schedule: in the evening every three days with an enema. As you might imagine, uncontrollable D is pretty awful when I'm at work, unable to go to the toilet, and away from a caregiver who can whisk me to safety. Without going into detail, again, it was pretty crappy. That's all I'll say.

The antibiotic that did me in was amoxicillin-clavunate for an ingrown toenail infection. In hindsight, the oral antibiotic was probably unnecessary. C diff first reared its head in March 2016. I had traveled from Oklahoma to Houston for business. I felt bad all day, and I exploded after being transferred into bed. I figured that it was just a stomach bug, but I went to the doctor the next week and tested positive for C diff.

I did six antibiotic treatments between March – October 2016:
Flagyl (500 mg, 2x daily, 10 days, RX by PCP)
Flagyl (500 mg, 2x daily, 14 days, RX PCP)
Vancomycin (250 mg, 2x daily, 14 days, RX by PCP)
Vancomycin (125 mg, 4x daily, 14 days, RX by G.I. Doc #1)
Vancomycin (125 mg, 4x daily, 14 days w taper, RX by G.I. Doc #2)
Vancomycin (250 mg, 4x daily, 90 days, RX by I.D. Doc)

Each relapse was a few days longer after the last pill than the previous relapse, but only 8 days after the last pill of course 4, and I relapsed during the 1 pill every 3 days portion of the course 5 taper. My ID Doctor did not want to do an FMT. He said that it's still too new, and we don't know what the possible side effects could be. Of course, I recognize that he's not in the business of FMTs. Even knowing that he was biased, this was good news to my ears; as terrible as relapses are for me, the prep for a colonoscopy sound like absolute hell for a quadriplegic, especially if I'd have to do it in a hotel in a big city (I live in rural OK).

Right at the end of course 6, I visited again with the ID Doctor and G.I. Doc #3 (new). I was 24 hours from my last vanco dose, and I wanted to plan a path forward if I relapsed. G.I. Doc #3 GUARANTEED that the C diff would be back and insisted that I do an FMT. ID Doctor had high expectations that the 90 day treatment would prove to be successful, but he would recommend a 180 day course if it failed. You can see my previous post where I was trying to decide which doctor to listen to. With my fear of the colonoscopy prep/FMT, I decided for the wait-and-see approach.

My last vancomycin dosage was on the morning of November 1, 2016. So now I'm more than six months out, and I feel great. I had a 24 hour bout with a stomach bug or IBS (I'm not sure which) around December 20. I was so afraid C diff had returned! Everything went back to [the new] normal, though. Even six months out, I'm constantly paranoid that a relapse is around the corner, even though I know there's practically a 0% chance of that happening without being on a course of antibiotics.

I should mention that I changed my diet heavily during the last course of antibiotics. It's hard to know what helped and what was unnecessary. I have been taking Florasror 2x daily, VSL#3 2x daily, and another Japanese probiotic that supposedly is good against C diff. I also found something called the GAPS Diet, which is geared toward reestablishing good gut flora for patients with intestinal and neurological conditions (apparently gut flora can be blamed for autism, ADD, etc.). The main rules were feeding good bacteria (natural yogurt with probiotics, kefir, sauerkraut, miso soup, prebiotics like almonds, fiber, asparagus), cutting out bad-bacteria food (SUGAR), and healing the gut (fatty meats, broths). The GAPS Diet starts you at the bare minimum and works foods back in. I'm practically back to normal but I still am taking the probiotics, I try to limit my sugar intake, and I add probiotic foods several times weekly (yogurt, kefir).

I tried to avoid making this a novel, but I failed. I hope that somebody can find this helpful!
Last edited by midway on Sat May 13, 2017 7:39 pm, edited 1 time in total.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Six Months Out from 5 relapses

Postby NanciT » Sat May 13, 2017 7:20 pm

GREAT NEWS!! Thank you so much for posting, I remember when you were on the site and it's wonderful to hear you have beaten the Beast and are doing so well!!

NanciT

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Six Months Out from 5 relapses

Postby roy » Sat May 13, 2017 8:33 pm

Thanks for posting Midway.
A post like this gives back so much to the site.
It gives hope to all the posters who have ongoing active c.diff.
Sure does put the "I had a belly cramp yesterday" posts into perspective!
Congrats and respect.
Roy

NikaNik
Long Time Contributor
Posts: 699
Joined: Wed Mar 11, 2015 11:52 am

Re: Six Months Out from 5 relapses

Postby NikaNik » Sat May 13, 2017 10:16 pm

Congrats, midway! Thank you for sharing your story.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Six Months Out from 5 relapses

Postby amyc » Sun May 14, 2017 6:06 pm

Congratulations, and having recently moved from OK, wow, what a story! Hopefully you didn't have to drive all the way to OKC or Tulsa to see your ID and GI doctors. I also hope you got to enjoy telling your GI doctors about the treatment that worked for you and spared you the scope prep. Prep is horrible for people with full use of our limbs. I can't imagine doing it as a quadriplegic.

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Six Months Out from 5 relapses

Postby Bobbie » Mon May 15, 2017 2:47 am

Midway,
Congrats. You have triumphed over many obstacles.

Your story is an inspiration to others.

Thank you.Please keep in contact.

Lisa33
Long Time Contributor
Posts: 2430
Joined: Mon Sep 29, 2014 1:45 pm

Re: Six Months Out from 5 relapses

Postby Lisa33 » Mon May 15, 2017 10:27 am

Congrats to you! Thank you so much for sharing your story. This definitely gives hope to others who are currently suffering on this site. I wish you continued health. This was a great post!

Lisa

PattieF
Regular User
Posts: 53
Joined: Thu Sep 01, 2016 3:12 pm

Re: Six Months Out from 5 relapses

Postby PattieF » Mon May 15, 2017 12:16 pm

An inspiring post. I'm sure others will feel the same. Thanks for sharing your story Midway.


Return to “Success Stories”



Who is online

Users browsing this forum: No registered users and 10 guests