Whose stool did you self administer? Is it safe to do this?

I used a family member in my household, with their consent obviously. I picked the member with the 'cast iron gut' that has never had diarrhea, let alone used antibiotics in their life. Its safe provided you get the full range of tests recommended on the sample donor. I adapted the method from this site http://thepowerofpoop.com/epat...splant-instructions/ since only a small amount is needed for a J-Pouch obviously.

OK so its been a week and 4 days since I did the single FMT treatment. Here is the status:

I'm pleased (amazed) to say that it appears to have worked - I only hope it lasts. After 2 years of continuous antibiotics I am now finally off. It's hard to believe that this treatment is so effective, and it angers me that the FDA has a hand break on this treatment for so many that have no other option - my guess because the drug companies haven't figured out how to make money from it yet.

The night of the first treatment I suffered badly with gas over load. This continued for the first few days and I was thinking I had made a big mistake. Presumably there was a bacterial bloom of sorts and they all had a party in there while they sorted themselves out. It reminded me a lot of the reaction I have had in the past when I try to take powerful probiotics like VSL.  By about day 4 things were really settling down and the gas was gone. No bloating, cramps, gas and no million trips to the toilet that I normally have from SIBO due to gas consuming all the pouch capacity the minute I stop taking/cycling antibiotics.

I'll post another comment in few weeks on the status. Right now its fingers crossed that 'the cure' lasts. I wish I had done this sooner.

Glad you got some quick positive results! Cases like yours will help bolster more research in this area, and development of an "off-the-shelf" treatment. An oral capsule is in development. But, so far the bigger stumbling block is the restriction to use only for C. difficile.

http://jama.jamanetwork.com/ar...px?articleid=1916296

Fingers crossed that this is a long term solution for you!

Jan

FYI

http://www.mgmc.org/medical-se...gi/fecal-transplant/

This is a small hospital just 30 minutes away from where I live.  I posted a link about this to a topic about c.diff a few weeks ago.  They have a donor that's been tested and they use a protocol to convert the raw material in to different doses and they are frozen for use in treating future patients. It saves the expensive cost of testing individual donors every time someone needs it.  I don't think it was available when I had recurring c.diff but should it ever come back I know where I'm going to get treated.

How is SIBO tested? Is there a definitive test or is it just ruled in when other things are ruled out? I'm having pouchoscopy in 2 weeks due to severely low hemoglobin necessitating blood, ongoing Cuffitis since September, and to determine if anything else is the problem- will Dr. be able to differentiate between Pouchitis and SIBO from this? How typical is it for them to look above the pouch? Others have mentioned stool pooling up there. Actually hoping for SIBO or something that will respond to antibiotic...better than diverting or permanent ileostomy that appear to be my next options. Am worried with antibiotics about CDiff- are there ones that are less likely to cause CDiff? Had it several times with UC prior to jpouch and found it to be the worst thing ever! Willing to try fasting between meals to see if any difference though with being on prednisone I seem to want/need food all the time. I know I eat too many carbs as well, needed to bulk up my output.

Thanks!

laurie

There is a hydrogen breath test that is sometimes used for SIBO. My sense, though, is that it's far from perfect, and many docs (e.g. mine) tend not to use it. I believe the hallmark of SIBO is severe gassiness - at least that was treated as the key symptom in my case.

If you need antibiotics and have to be particularly careful about C diff, Flagyl is a good place to start. Flagyl is actually used as a first-line antibiotic to treat C diff, and is also first-line for pouchitis. Antibiotics for cuffitis seem like voodoo to me, though I know some people seem to be helped by them. UC meds delivered rectally make more sense to me for cuffitis, and (if they work) are way better than more surgery.

Thank you Scott for information. You always come through. Gassiness is a huge issue for me, daily... It builds up, I am able to relieve it, and then builds again. So maybe ...I do have SIBO. Have used Flagyl before so they may recommend that if antibiotic is warranted. 

I have used Canasa and currently use Hydrocortifoam twice daily. I feel it helps reduce number of output, so try to use it twice, but some days I'm just too sore to use it (hemorrhoids). 40 mg prednisone won't kick the Cuffitis either, nor did Entocort, and 

I'm 14 weeks into Entyvio infusions, so seems it's pretty stubborn or severe.

yes, would do most anything to avoid surgery and/or ostomy! Just discouraged, as feel my options are evaporating.  Have thought I would just live rest of life on prednisone, over ostomy, and deal with side effects but this time the side effects have been too much - previously I only  had weight  gain and bone density issues. I know that is no longer an option for me. Thanks again Scott! Laurie

The antibiotics used to treat SIBO are typically different than those for pouchitis. I used doxycycline for a couple of months, and that did the trick in my case.

If you do end up looking at surgery for cuffitis that just won't quit, pouch advancement with mucosectomy usually works well if performed by a very skilled and experienced surgeon. The hand-sewn anastamosis is a very delicate technique. This would be most likely to succeed if cuffitis is the *only* problem.

FYI - Cipro was the antibiotic that "caused" my first bout with c.diff when I still had my colon.  I've had a nasty time with c.diff in my j-pouch too.  It took multiple rounds of flagyl to get rid of it.  If it ever comes back they will have to give me something else as flagyl makes my neuropathy worse.  

Liz you might want to try using your foam and canasa. When I'm having some of my worst days I use it and anucort - at different times of the day.  Now I just throw everything at it to get my j-pouch pain to decrease.  My GI at Mayo's approved using them in unison for cuffitis along with antibiotics for pouchitis. 

Thanks TE Marie! Maybe tomorrow I will try getting 'extra' Canasa doses in between my Cortifoam doses. My doctor is hesitant on that cause he feels inserting anything can cause damage, and that since I've been on prednisone my tissue/skin has thinned. But, last few days I've skipped most doses of both since I'm suffering from multiple hemmeroids, and without those meds I'm doing worse than usual. So, tomorrow, I'll try different plan. Thanks!

Laurie