1 Month Out - Vanco, Dificid, FMT

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.
cdaleguy
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1 Month Out - Vanco, Dificid, FMT

Postby cdaleguy » Thu Mar 16, 2017 1:00 pm

Wow. I sometimes wondered if I'd ever get my chance to post here. Here's my story.

In December 2016 I was on amoxicillin for a sinus infection. (Dumb choice.) I frequently visit the hospital because of my job. I relied religiously on the anti-bacterial foam located all over the hospital. (Now I know it does NO good against c diff.) Somewhere in mid-December, I picked up c diff. But it would be a while before I knew it.

About a week before Christmas I was in a bad place. I was having diarrhea but that was fairly normal for me after taking amoxicillin so I didn't think a whole lot of it. It was making me lose a bit of weight and I needed to be losing so I was pretty content with that. What WAS out of place though was my anxiety was through the roof. My body was off and I couldn't figure out what was going on. I went to the walk-in clinic, my primary doctor's office and (on Christmas Day) the emergency room. The first two places both tried to give me MORE antibiotics to deal with how I was feeling but both also told me they thought I was probably just dealing with anxiety and needed to see my psychiatrist. I went to her office shortly before Christmas and cried in her chair for a solid hour because I felt like I was losing my mind and was going to end up in a mental health facility. Seriously. It was that bad. I was depressed and scared but didn't know why. She put me back on a mood stabilizer in the hopes it would bring me back to a baseline. Finally, I ended up at the ER on Christmas Day because I felt so nauseous, sick, anxious, shaky and weak that I thought I was dying. They gave me fluids, checked me for a cardiac episode and sent me on my way (even though I told them that I had been having diarrhea even while I was there at the ER that came on post-antibiotic).

I spent several days at home in bed after that, totally confused and totally depressed. I'd never had anything like this happen. I texted my friend who is a GI doctor and he said I needed to be checked for c diff based on my explanation via text. He ordered the stool test and I was terribly embarrassed to even pick the kit up, let alone drop it back off. I didn't believe I had c diff but I felt glad to at least be checking for something. I cried tears of joy when he told me the next evening that I had a c diff infection. I was just so glad that what was wrong with me wasn't all in my head. He explained the treatment would be with vancomycin and that I should be better in two or three days. (HA!)

I had a rough go of it with the vancomycin. It caused me a lot of bladder issues especially (constant urge to urinate and burning when I did go). I ended up at urgent care thinking that I had a bladder or kidney infection only to be told that the vancomycin had really just irritated my bladder a lot. I had to take a fair amount of klonopin (anti-anxiety med) to be able to sleep and had a LOT of nausea and dizziness during this vanco treatment.

I was thrilled to end vancomycin after ten days of a rough treatment. I tested negative for ten days before I got a positive test result. My wife and I were devastated that it had come back because we knew that I was now on a journey of "recurring" c diff, and that was a tougher road to be on. My wife was very pregnant at this time (and right now is about to give birth any day). We cried a lot but we were also glad I was going to be on Dificid because we believed Dificid would be the silver bullet that would fix things. We were very blessed that our insurance covered it and that, using the Dificid savings program, we ended up only owing $50 out of pocket. I could've kissed the pharmacy tech when they told me that.

I had almost ZERO problems from the Dificid and felt great most of the time I was on it. It was an easy medicine to take (far easier for me than waking up in the middle of the night to make sure I got those 4 doses of vanco in). My stools firmed up and things were looking good. I finished the Dificid feeling like maybe I was done with c diff. I got more and more confident as I got negative test results. But I relapsed with a positive result after a bout of diarrhea around day 15. I was DEVASTATED. I had been telling everyone that it was over and I had almost quit thinking about it for a couple of days.

At this juncture, it was necessary to work with an infectious disease specialist to get a FMT scheduled. They put me to the front of the line (which was nice in a lot of ways) but that meant that I didn't get to be on a course of meds prior to the FMT (and I should have been...and you should before having an FMT). My FMT was done via endoscopy into my jejunum. (I don't recommend doing it this way...get it via colonoscopy. It isn't offered that way in our region though.) I had a good day or so after the procedure and felt okay.

Sadly, I began to have the worst diarrhea of the whole process on the second or third day after my FMT. I continued to have diarrhea, pain, bloating, gas and all of that good stuff. I believed the FMT had failed. One reason I believed this is because doctors tend to over-promise about the FMT. They told me at the ID doctor that most patients were better in two or three days after the procedure. Well, not this guy. I felt worse. They tested me several times and all were negative for c diff. They gave me Bentyl but it didn't help. Eventually I ended up accepting that this was probably post-infectious IBS and that I was going to have to learn to live with it.

Right now I continue to have post-infectious IBS symptoms. My digestion is about what it was during active c diff. But that's an improvement from where it was a week or two ago. The thing that seems to have made the most difference for me so far is my doctor giving me samples of Enteragam (a medical food). I've only been on it a few days but I noticed an almost immediate difference in my stools becoming firmer instead of just diarrhea. Stool became easier to pass and less frequent (although still pretty urgent). It's been back and forth with progress and then backwards steps but, on whole, I believe I'm on the upward swing.

I am especially thankful to those who were an encouragement to me on this site. I will say that almost everything that has been stated by the administrators of this site has panned out to be true in my journey.

I intend to get my picture taken with my negative c diff test results today (I have them in hand) to remember today as my one-month free of c diff anniversary. The first of many I hope.

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

Re: 1 Month Out - Vanco, Dificid, FMT

Postby Lisa33 » Thu Mar 16, 2017 1:30 pm

What a great post!!!! Thank you for sharing and giving others hope that there is always an end to this horrific illness in sight. I am so glad you are doing so much better. You have been through a horrific ordeal, but you are now negative for c-diff!!!!

I wish you continued health, and congratulations on your recovery!

Lisa

Benh
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Joined: Tue Feb 07, 2017 5:36 pm

Re: 1 Month Out - Vanco, Dificid, FMT

Postby Benh » Thu Mar 16, 2017 4:20 pm

Very happy for you and I wish you continued success and that you get to enjoy your family so much more now than ever before!

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

Re: 1 Month Out - Vanco, Dificid, FMT

Postby NanciT » Thu Mar 16, 2017 10:22 pm

Wonderful to see your post here!! Wishing you brighter well days ahead!

NanciT

georgina
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Joined: Sat Sep 12, 2015 10:07 am

Re: 1 Month Out - Vanco, Dificid, FMT

Postby georgina » Fri Mar 17, 2017 3:36 am

It seems like you have turned the corner. So glad that things are improving and you are feeling better , now you can move on with your life and enjoy your newborn baby. Congrats and thank you for posting in success stories!

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

Re: 1 Month Out - Vanco, Dificid, FMT

Postby roy » Fri Mar 17, 2017 3:36 pm

Congrats
Please promise.
NO more testing unless you get full on watery D!

Davidtm
Regular Contributor
Posts: 225
Joined: Mon Jun 27, 2016 10:15 pm

Re: 1 Month Out - Vanco, Dificid, FMT

Postby Davidtm » Sat Mar 18, 2017 4:34 pm

Great news and so glad to read of someone having success in this battle. Congrats on the negative tests and hope you and your family can move forward and enjoy each day. Good luck with the new baby and thank you for being an encouragement!

Tsc1964
Regular Contributor
Posts: 239
Joined: Tue Nov 29, 2016 1:18 am

Re: 1 Month Out - Vanco, Dificid, FMT

Postby Tsc1964 » Sat Mar 18, 2017 11:58 pm

Cingrats on negative an wishing you continued healing. Congrats on upcoming birth of your baby also

tag
Brand New Poster
Posts: 3
Joined: Fri Mar 10, 2017 8:35 pm

Re: 1 Month Out - Vanco, Dificid, FMT

Postby tag » Sun Mar 19, 2017 4:12 pm

Congratulations!! So great to hear. I ate Bubbie's pickles with probiotics naturally occurring in their juice. I also took 2 or 3 shots of it a day and that cleared up my mid-morning IBS (which I still don't have). Again, so happy for you! Wishing you continuous improvement. And congratulations on the soon-coming baby, I wish your family best of luck.


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