The Poop Scoop
April 9, 2022 7:56 AM Subscribe
I am likely having a fecal transplant to combat persistent gut infection. I'd love anecdata and insights if you have first or second hand experience with this.
I'm going on my third course of Vancomycin for C Diff. It's the pits. I also have an immune disease that makes clearing infections difficult.
We had been planning to do a home transplant using my son as a donor but because of the length of my infection I now qualify for a hospital transplant. (This would be at Mass General Hospital in Boston.)
I believe that this is the right course of action but I'm super nervous and a bit grossed out. If you have gone through this or know someone who has (either DIY at home or at a hospital or treatment center) I would really appreciate hearing what the takeaways were from the experience and if it was successful or not. I'd also love to hear how many rounds of treatment were needed.
Tips and tricks and any other words of wisdom are very welcome.
I'm going on my third course of Vancomycin for C Diff. It's the pits. I also have an immune disease that makes clearing infections difficult.
We had been planning to do a home transplant using my son as a donor but because of the length of my infection I now qualify for a hospital transplant. (This would be at Mass General Hospital in Boston.)
I believe that this is the right course of action but I'm super nervous and a bit grossed out. If you have gone through this or know someone who has (either DIY at home or at a hospital or treatment center) I would really appreciate hearing what the takeaways were from the experience and if it was successful or not. I'd also love to hear how many rounds of treatment were needed.
Tips and tricks and any other words of wisdom are very welcome.
The book What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt
by Tessa Miller talks about the author's experience with multiple fecal transplants. I'm not sure it had much in terms of medical tips because it's not exactly that kind of book, but it might be worth checking out.
posted by needs more cowbell at 8:42 AM on April 9, 2022 [1 favorite]
by Tessa Miller talks about the author's experience with multiple fecal transplants. I'm not sure it had much in terms of medical tips because it's not exactly that kind of book, but it might be worth checking out.
posted by needs more cowbell at 8:42 AM on April 9, 2022 [1 favorite]
Best answer: One of my oldest friends has HIV and underwent a fecal transplant a couple of years ago following a lengthy rehab stay and subsequent C diff. He said he felt like a brand new person after the transplant and recommends it to anyone who qualifies. I’ve also case managed a couple of senior patients who had fecal transplants and the relief from symptoms was pretty immediate in both cases. I wish you the best and hope you have equally good results! C diff/vanc are the worst.
posted by little mouth at 9:52 AM on April 9, 2022 [8 favorites]
posted by little mouth at 9:52 AM on April 9, 2022 [8 favorites]
Response by poster: @littlemouth that is so reassuring to hear! Thank you.
posted by jeszac at 10:31 AM on April 9, 2022
posted by jeszac at 10:31 AM on April 9, 2022
Best answer: I worked in microbiome therapies for multiply recurrent C. diff for years - designing, running, and analyzing data from clinical trials at two different organizations. This is a really fantastic treatment option, and is likely to have you feeling much better very quickly.
Your best option, in my opinion, is to see if you can get access to SER-109 under the expanded access program - this is the only microbiome therapy with phase 3 clinical trial data demonstrating efficacy and a good safety profile (published in NEJM in January of this year). It also has by far the lowest "ick" factor, because of the purification process used in the production of SER-109, which essentially extracts the bacterial spores from donor material, thus washing away all of the "poop" elements. Seres Therapeutics, the maker, is based in Cambridge and they're good people doing excellent, rigorous science with a lot of care and compassion for patients - I am incredibly proud that I was involved in that program.
Your second best option is with a hospital-screened donor supply (rather than from an outside stool bank) transplanted via colonoscopy. If you're under care at MGH, they do have a hospital screening procedure. They may or may not offer you a choice between colonoscopy and encapsulated material - if you can choose colonoscopy, it has a much higher success rate (because the bacteria that do the work are delivered directly to the large intestine, instead of transiting through the stomach where acids will destroy a lot of them).
posted by amelioration at 11:04 AM on April 9, 2022 [12 favorites]
Your best option, in my opinion, is to see if you can get access to SER-109 under the expanded access program - this is the only microbiome therapy with phase 3 clinical trial data demonstrating efficacy and a good safety profile (published in NEJM in January of this year). It also has by far the lowest "ick" factor, because of the purification process used in the production of SER-109, which essentially extracts the bacterial spores from donor material, thus washing away all of the "poop" elements. Seres Therapeutics, the maker, is based in Cambridge and they're good people doing excellent, rigorous science with a lot of care and compassion for patients - I am incredibly proud that I was involved in that program.
Your second best option is with a hospital-screened donor supply (rather than from an outside stool bank) transplanted via colonoscopy. If you're under care at MGH, they do have a hospital screening procedure. They may or may not offer you a choice between colonoscopy and encapsulated material - if you can choose colonoscopy, it has a much higher success rate (because the bacteria that do the work are delivered directly to the large intestine, instead of transiting through the stomach where acids will destroy a lot of them).
posted by amelioration at 11:04 AM on April 9, 2022 [12 favorites]
Best answer: My wife had a recurring c.diff infection and was also on vancomycin for about 2 years. She was eventually prescribed Dificid, which was a new antibiotic developed specifically for this infection. Ask your doctor!
posted by disconnect at 3:17 PM on April 9, 2022
posted by disconnect at 3:17 PM on April 9, 2022
Best answer: My friend was the donor for her dad, who had c.diff following chemo.
It saved his life.
One treatment (colonoscopy) and it was resolved. This was several years back when they were just starting to use it as a treatment.
I had her all lined up to be a donor for my partner if he needed it following his cancer treatment (luckily he didn't). I get the ick factor, but it is pretty damn miraculous.
Regardless of what treatment you choose, best of luck!
posted by jenquat at 3:27 PM on April 9, 2022
It saved his life.
One treatment (colonoscopy) and it was resolved. This was several years back when they were just starting to use it as a treatment.
I had her all lined up to be a donor for my partner if he needed it following his cancer treatment (luckily he didn't). I get the ick factor, but it is pretty damn miraculous.
Regardless of what treatment you choose, best of luck!
posted by jenquat at 3:27 PM on April 9, 2022
Best answer: They're currently doing research into fecal transplants and food allergies. It's a really exciting development and showing lots of promise.
Here is an article about the research, and it also happens to mention that a fecal transplant cures c.diff 96% of the time which is really amazing
posted by kinddieserzeit at 6:10 PM on April 9, 2022 [1 favorite]
Here is an article about the research, and it also happens to mention that a fecal transplant cures c.diff 96% of the time which is really amazing
posted by kinddieserzeit at 6:10 PM on April 9, 2022 [1 favorite]
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posted by jeszac at 7:57 AM on April 9, 2022