Let’s Talk Poo (Fecal Transplant. Yup. I said it.)
Let’s talk about fecal transplant, also called FMT (Faecal Microbiota Transplantation) and HPI (Human Probiotic Infusion). It’s pretty much exactly what it sounds like. It’s fun to make your friends squirm when describing it. I usually just say “Poop, saline, blender, enema bag” and watch their eyes widen and jaws drop. People cringe at the thought, but if you’ve been suffering most of your life with Ulcerative Colitis or another Irritable Bowel Disease (or love someone who has), your perspective changes.
My daughter, Ashley*, was diagnosed with Ulcerative Colitis at just 10 years old after being subjected to her first colonoscopy. I’m sorry, but kids shouldn’t have to go through procedures like that! It didn’t go well on two accounts. They couldn’t get her IV in so she had little to no sedation and the results showed a final diagnosis of UC.
Fast forward 10 years later and my almost 20 year old daughter suffers from flare ups that last months at a time. They make it difficult for her to manage her school and work and her quality of life suffers for it. She is in constant pain, uses the bathroom several times a day, fights nausea, has hot flashes, major fatigue and a myriad of other symptoms. We spend more time in procedures and in hospital GI departments than anyone should have to. Doctors all have the same answers. “Let’s take a look inside and see what’s going on” and “Let’s try more medication”.
We’ve even tried the natural route. She’s taking high quality probiotics as well as Boswelia (which helped for a while and gave her a 5 year remission with NO prescription meds!). We’ve seen a naturopathic doctor, done allergy testing, acupuncture, you name it, we’ve tried it. Except for this fecal transplant idea. This is our last resort.
There is very little information about people who’ve tried a fecal transplant online. In fact, most of the information you’ll find will relate to the C. Diff bacteria, which my daughter does not have. Doctors have found that this can be a miracle cure for folks with C. Diff. Studies are showing that it could potentially also be a miracle cure for other IBD and IBS issues, including UC.
Here are some links to studies:
Our first order of business was to try and find a doctor who would perform an FMT during a colonoscopy. Our GI doctor was very put off by the yuck factor. When we pushed to have her look into it anyway, she admitted that her hospital would only perform the procedure for patients with C. Diff (which Ashely* does not have). We attempted to get into a study at the University of Washington, but were denied. I emailed every GI doctor I could find reference to doing FMT’s online and each one responded with an “I’m sorry, I only perform that for C. Diff.” This has lead us to our very last resort. DIY. Let the thrift store blender shopping begin!
Below you will find a copy of the FMT protocol that we will be using. It is allegedly Dr. Borody’s protocol, from his clinic. I have been unable to confirm this, however, we have had a licensed Naturopathic doctor review it and sign on to support us.
While trying to research the success or failures of others who have tried this at home, you almost hear crickets. I think I found one blog about it and as usual, the posts fell off after a very short time. There are a lot of posts about interest in the procedure, but not many who’ve followed the suggested protocol of Dr. Borody in Australia by the book nor many who come back to say how they are faring many months or years later. Even harder to find, is any detail about how things went during the procedure, tips on how to make it easier, or exactly how the procedure affected the patient, while it was happening.
With Ashley’s permission and desire to inform fellow sufferers, we intend to document, in detail, our experience.
Click to download the HPI Home Infusion Protocol.
UPDATE: I just found a fabulous “How To” from the DIY perspective with step by step instructions for preparing and cleaning up. The doc above is excellent for preparation and what testing should be done. This doc adds more detail to the parts you’ll be doing on your own.
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*Names have been changed for privacy
I usually don’t laugh out loud but I actually did when you said you could almost hear crickets to learn of successes or failures. So true. I enjoyed your writing / story. My 17 yr old daughter was dx with UC (no c-diff) 11 years ago. We started diy FMT a week ago and tried it 3 times. The first 2 were terrible donor samples (from me) but the 3rd was excellent. She has been doing great for 3 days now with almost normal poops.
She was in remission for 9 years by keeping her carbs around 70 a day, fyi. But then she turned 16 and what does mom know? After sneaking a lot of sugar she flared last fall. But the low-carb diet does work on a long term basis, imo. But the fmt is great to speed up healing when flares occur. Oh and she is now anti-sugar.
Posted by: cmhammer | June 4th, 2013 18:27