Success after FMT - Question on lingering issue.

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.
Cdifrecovering
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Success after FMT - Question on lingering issue.

Postby Cdifrecovering » Mon Feb 18, 2013 7:07 pm

Took Augmentin 7 months ago, positive C-diff. 26 year old healthy male. At worst, had 15-20 BM's per day with M and B (lasted 3 days).

Prescribed Flagyl once test came back positive 2 weeks after first Augmentin.

11 Days of Flagyl - Diarrhea under control but Nausea very bad while on Flagyl.

Miserable symptoms for 3 months after – indigestion, stomach cramps, nausea. Diarrhea off and on.
Took Rifamxin for 14 days as GI Doc thought I may have been struggling with SIBO. Saw no difference at all.

After struggling for about another month, I went back into GI – he ran every possible blood (celiac) / stool test – Came back POSITIVE C DIFF.

Started 2 week Vanco Dosage (125 x 4 a day) – 3 days after going off, symptoms / smell returned. Immediately started 6 week Vanco taper. During this time period I was able to get my brother tested for everything needed in order to do a Fecal Matter Transplant. While I was on Vanco, I was at 95% normal (I felt great). Three days after cutting from 3 to 2 doses a day, symptoms / smell returned.

GI Doc held all Antibiotics for 2.5 days, gave colonoscopy instructions, followed through with colonoscopy and fecal matter transplant during. Colon looked healthy except for “At the ileocecal valve, a solitary superficial ulcer ranging in size from 3 mm. to 3 mm was visualized” “Cancer was not visualized, No Colitis, No ileitis, No Diverticulosis). Thoughts on the ulcer?

As you can imagine, right after the colonoscopy / fecal transplant – you don’t go to the bathroom for a few days. When I started to go again, consistency changed to loose clay (sorry for TMI – but who really cares after struggling with this beast for so long. My threshold for what most people consider gross has changed.

Diarrhea came back 5 days after Transplant for two days so I did a fecal transplant at home via an enema, blender, etc… My donor was leaving for 2 weeks so I didn't want to wait around. My doctor gave his blessing on the FMT. Super easy process – wish I wouldn't have paid $1000 extra for the Fecal Matter transplant after the colonoscopy but happy at the same time to know that my colon was somewhat healthy.

Original Fecal Matter transplant was done on 2/7, today is 2/18 – Doctor just called and stool test done on 2/14 came back negative. I guess I didn't need to do the Transplant at home but oh well, I learned how to do it just in case I need to in the future.

I am still having very loose stools once in the morning, once per day with an urgency to go after eating. Other than that, bad gas cramps and indigestion that I never had before.

My question – What are you doing after you are negative to get your stools to return to normal?

I have been taking S Boulardii for two weeks (Jarrow brand twice per day). I have been eating a modified paleo diet with no Gluten or Dairy for over the last 2 months.

Thank you and good luck to all that are struggling. You will get better.

Jeff

AndyShax
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Re: Success after FMT - Question on lingering issue.

Postby AndyShax » Tue Feb 19, 2013 1:26 am

Sounds like we are on the same stage of treatment.
I also did my transplant early Feb and post transplant have similar lingering issues..
I drink Kefir instead of Boulardii as boulardii makes gives me bad gas and heartburn (try to give it a break for a few days?)
I also got dairy intolerance but I can get around it by mixing lactase enzyme tablets with milk products

Your doctor sounds more aware of treatment options than most GIs.. who is he?

beth22
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Re: Success after FMT - Question on lingering issue.

Postby beth22 » Tue Feb 19, 2013 3:04 am

I have the same reaction to sach boulardii that Andy has. It blows me up like a balloon and I also get heartburn from it and a rash. The food intolerances seem common. Doctors tell you that it takes at least 6 months for your colon to recover, if not longer. I still have food intolerances and my FT was almost 3 years ago, but I did a home enema last November and it did help. Give it some time. I took Pepto Bismol, but check with your doctor because it may also kill good flora. It has antimicrobial properties. My GI said they treat microscopic colitis with it and it has anti-inflammatory properties and it does help me, but I don't take much at all. I would try a different probiotic and see if it helps. Bio-K rice formula is supposed to be good. It is a liquid, so you can drink a little or the whole thing. I take a little VSL#3 - but only a small amount.

Sarah T
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Re: Success after FMT - Question on lingering issue.

Postby Sarah T » Thu Feb 21, 2013 2:04 pm

Fecal transplant done two weeks ago today. Otherwise healthy 61 year old female - how long can one have this stuff? I swear, so far it's been off and on for about 5 years but no one found it until 1.5 years ago. My 5 trips over the years to the emergency rooms sent me home with Flagyl but the symptoms came back every time. Lots of vancomycin and flagyl (can't tolerate either anymore) and Dificil but nothing worked. I don't feel any better and I know it can take months to see good results sometimes - my poop is different (sorry) but the nausea and cramping are getting worse again. Doc ordered another c-diff test today. I don't know what to eat but I've lost too much weight several times when I have had to have just liquids and salty crackers. Does anyone have ideas on what else should be tolerated for nutrition?

Cdifrecovering
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Re: Success after FMT - Question on lingering issue.

Postby Cdifrecovering » Fri Feb 22, 2013 3:26 pm

Sarah, I am in the same spot. I thought the FMT was going to be the silver bullet but I am still having bad gas, indigestion, cramping, trouble sleeping because my stomach is working too hard while I sleep.

As tempting as it is to go back on the Vanco, i have a feeling this is going to get worse before it gets better.

I found a local farmer who sold me live Kefir grains, I am making my own kefir. Also starting to make Bone Broth and taking Glutamine a few times a day.

I have a call into my doctor to do another test, will keep everyone update.

mortgageman
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Re: Success after FMT - Question on lingering issue.

Postby mortgageman » Thu Apr 04, 2013 5:53 pm

I am in the exact same spot as well.

After discussing this with many people privatley i think that this is just what we have to expect, and we have to endure it for as long as we have to endure it. It is what it is.

I have been adhering to the FODMAP Diet and recently checked out the GAPS diet per a recommendation from another poster.

How was your test result?

i have a personal theory -- My colonoscopy was CLEAN after massive doses of vanco. I think that the vanco kills so much bacteria we are left with dysbiosis and this cramping, gas, etc, is all the colon just healing itself, for those with ulcers, the ulcers healing but also, the flora healing, and i think that is whats causing a lot of us post transplant hell.

My dr specifically told me to avoid both antibiotics and probiotics as he diddnt want ANY interference. I was kinda surprised but i havent taken anything but l-glutamine.

Hope this resolves soon, but you are def not alone in the post transplant throes.


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