Failed colonoscopy FMT but cured by upper route?

If you have had or are considering an FMT please share your experiences here.
richlin
Regular Contributor
Posts: 108
Joined: Sat Feb 13, 2016 11:05 am

Failed colonoscopy FMT but cured by upper route?

Postby richlin » Sun Feb 14, 2016 12:30 am

Hi,

I'm new to this forum, been trying to get access for a while. If you'd like context of my progress please view here: viewtopic.php?f=8&t=16178

I've had a colonscopy FMT 5 days ago. I'm assuming the symptoms I have are pretty much the "IBS recovery phase". Haven't tested my stool by PCR yet but will do so in about 2 days, that should tell me if my IBS recovering phase is true.

Otherwise, my question to everyone is are there cases where the enema/colonoscopy route didn't work but that got the "miracle" cure from going the upper route (either NJ or Pills)? I actually have a ND who is willing to order the Openbiome G3 pills for me when I say the word. Just wondering if I should wait it out and go through this IBS recovery phase or try out the Openbiome pills maybe 1-2 weeks out?


Jan 2015 - Took Keflex resulting in D and M (probably had c-diff but wasn't diagnosed). Managed to endure a whole year of loose stools 2x a day, heavy bloating (had to unbuckle my pants when sitting down), nausea, pseudo loss of breath, constipation (loose stools and had urgency but couldn't push out any stool)
Dec 2015 - Diagnosis: GI (Mary Chan - MD) Diagnosed Functional Bowel Disorder (IBS-D)
Dec 2015 - 4 DIY FMT (1 with unhealthy donor which I kept in myself for 2 days, and 3 other ones by healthy donor which I couldn't retain). Lead to heavy depression/anxiety/night sweats
Jan 2016 - Diagnosis: C-diff positive by GDH and toxin A and /or B positive
Jan 2016 - Took Metronidazole (Flagyl) 500mg 3x a day. Stopped at 7 days. On the 7th day I was having up to 12x bowel movements (either full blown c-diff or Antibiotic associated diarrhea)
Jan 2016 - 4 days off Flagyl my BM's dropped down to 2-3x a day, but still D and loose.
Feb 2016 - FMT by colonoscopy (250ML Openbiome). Held in for 6 hours.
Feb 2016 - 5 days out 2-3x a day, loose stools. Occasional, formed type 3-4 stool, but always mixed with loose type 5-6.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Failed colonoscopy FMT but cured by upper route?

Postby beth22 » Sun Feb 14, 2016 2:54 am

I had just the opposite happen. I was cured by the colonoscopy, but failed two NG transfers. The upper transfer can also cause SIBO because it puts bacteria that belongs in the colon into the small intestine, where some of that bacteria does not belong. My SIBO specialist told me that he has had several patients with severe SIBO because of FMT upper transfer. I guess I was one of them. I had to treat with Xifaxan and it did not clear it completely. I'm not sure if the FMT was the only reason, but it certainly factored in.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: Failed colonoscopy FMT but cured by upper route?

Postby georgina » Sun Feb 14, 2016 5:54 am

Hi Richilin
Welcome to the site and sorry you are having issues.You have been very lucky to get a FMT via colonoscopy after just one course of antibiotics .FMT is not a miracle cure , so don't look for that , it takes time (weeks or months) for the FMT to take hold and lots of patience.You can still experince symptomes after the infection is gone.I had a FMT via nasogastric tube two months ago and i'm still miserable so i can definitely tell you that it wasn't a miracle cure.
I'm sending positive vibes your way for a speedy recovery and a negative PCR result!

richlin
Regular Contributor
Posts: 108
Joined: Sat Feb 13, 2016 11:05 am

Re: Failed colonoscopy FMT but cured by upper route?

Postby richlin » Sun Feb 14, 2016 10:41 am

Thanks for all the encouragement!

I understand the NJ route has it's own risks (since they are putting the bacteria at the start of the small intestine). SIBO is definitely something I'd rather avoid.

However, I'm talking more about the fecal transplant pills. Specifically, the Openbiome G3 capsules with the MEM technology. Not sure if the pills break down in the colon rather than the small intestine.

I don't necessarily think the colonoscopy failed, but some things that I didn't do well pre/post procedure.
- Take Vancomycin (I was on Flagyl) to really knock out the C-diff burden
- Hold in the solution for 12-24 hrs. I held it in for about 4-6 hrs.

Openbiome G3 (MEM) technology: https://www.openbiome.org/s/FMT-Capsule ... -10715.pdf
Last edited by richlin on Sun Feb 14, 2016 11:36 am, edited 1 time in total.

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

Re: Failed colonoscopy FMT but cured by upper route?

Postby roy » Sun Feb 14, 2016 11:17 am

Please use hyperlinks as per the site rules and dont copy material from other sources directly into your posts.
It sounds like your self diagnosis and home FMT using untested doners might have cause more harm than good.
Your early symptoms were far from typical c.diff.
Either doner could have had asymptomatic c.diff or a multitude of other potentialy harmfull bacteria, viruses, yeasts, parasites that caused THEM no problems that you introduced into your body.
Its very unusual for a Dr to use FMT so soon in a c.diff infection.
Mostly you have to have 2 or 3 bad relapses before its even considered.
Considering the abuse your gut has undertaken it sounds like your getting better but your thinking ahead for more treatment far too much.
If you do relapse my oppinion is to get a Dr who is a little more cautious about overdiagnosis and overtreating.
The fact that your being tested 7 days after FMT points to a Dr that seems to be following your instructions instead of giving their best advice.

richlin
Regular Contributor
Posts: 108
Joined: Sat Feb 13, 2016 11:05 am

Re: Failed colonoscopy FMT but cured by upper route?

Postby richlin » Sun Feb 14, 2016 11:43 am

Hi Roy,

I appreciate the comments.

Yes, I used an untested donor and now I'm in this pickle. I believe I contracted c-diff from using the untested donors stool for a DIY treatment. You have to understand I was dealing with IBS for over a year with no available treatment working. Hindsight is 20/20 and if I could go back and change it I would.

Unfortunately, now I'm here and had a c-diff positive diagnosis 2 weeks ago. My Dr. was kind enough to move forward with a fecal transplant when the Flagyl was making the D worse. I was going to try Vanco but my insurance wouldn't approve it. Thus, I asked my GI to see if he would consider the FMT (which he happily obliged).

It's from my understanding that other members and best practice allows for a retest 7-14 days post-FMT. Therefore, what seems to be the problem that you raised about my Dr. not providing the best advice? (I'm asking this genuinely)

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

Re: Failed colonoscopy FMT but cured by upper route?

Postby roy » Sun Feb 14, 2016 1:20 pm

All the experts and all the guidlines say dont test to try to prove a cure.
Only the lack of watery D 3+ times a day indicates a cure.
Testing is not accurate after treatment and can result in both under and over treating.

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

Re: Failed colonoscopy FMT but cured by upper route?

Postby Bobbie » Sun Feb 14, 2016 4:10 pm

See CDI - c diff tests; the most recent info is last.

richlin
Regular Contributor
Posts: 108
Joined: Sat Feb 13, 2016 11:05 am

Re: Failed colonoscopy FMT but cured by upper route?

Postby richlin » Sun Feb 14, 2016 4:23 pm

Thanks for all the reminders.

I've read through literally each article on this forum, so I know about the IBS rule.

The problem with my situation is that I had "IBS like" symptoms with formed soft stools prior to my c-diff positive diagnosis. Therefore, I never really had "watery" D. Makes me wonder if I have a slight infection that is picked up via PCR but is so small that isn't causing me the textbook symptoms of c diff.


Return to “FMT Discussion”



Who is online

Users browsing this forum: No registered users and 15 guests