Yes, I had a Fecal Transplant – and it was the Best Decision I’ve Made
August 5, 2019 11 Comments
Category: MS, My StoryTags: C-Diff, Clostridium Difficile, FMT, Fecal Microbiota Transplant, Gut Health, OpenBiome, Stool Transfer Therapy, multiple sclerosis
There are certain things that you never thought you’d write about publicly, let alone even talk about with your closest friends, but here we are…. talking about shit.
Yes, that kind… poop… stool… fecal matter.
After my recent MS relapse (post here) and months of suffering from a bacterial infection that my immune-suppressed system couldn’t fight, I took my doctor’s advice and got a Fecal Microbiota Transplant (FMT) – AKA a stool transfer – to heal my gut…and guess what, I haven’t looked back since.
And yes, before I get into this, let’s all agree that this is super awkward to talk about…. It’s personal, private but super common so someone has to talk about it, right?! My hope is that my experience can help others in the same boat.
Fecal Microbiota Treatment
After knowing what I know now, I can say with full confidence that FMTs are the future of gut therapy and rejuvenation and yes, the cure to C-Diff. I had NO idea how much of our system banked on a healthy flora and how much everything can be turned upside down by an override of bad bacteria but here I am telling you – God forbid you or someone you know should even need it. OK, let’s back up for a second…
So I know you’re wondering – what the hell happened?! Well, I contracted a serious gut bacteria infection, called C Difficile Colitis, while in the hospital delivering Jack. “C-Diff” gives you non-stop diarreah, fevers, shooting pain and is as painful and gross as you’d think.. It is actually more common than you’d think too – it’s in 80% of kids under 5 and most adults – but typically it’s dormant and asymptotic. In most cases, one’s body has enough “good” bacteria to fight it but due to my super weakened immune system and the fact that I took antibiotics for a C-section infection, I had no ability to fight it and it overtook my body. After 2.5 months of antibiotics (with terrible side effects no less), I had to take my treatment to the next level and do a stool transfer. And guess what – it was SO worth it.
Yes. The thought of a fecal transplant is horrible and flat out gross but it was actually quick, easy and within a week I was feeling back to normal again. When your gut flora is back on track, you literally feel like yourself and that alone makes it worth it.
I’ve always been transparent on this blog – even when it’s a bit embarrassing like this – because I think others can learn and benefit from my experiences. There is a lot of research linking gut health to MS (my neurologist believes it’s all part of the reason I relapsed so quickly) so informing others of this alternative treatment may be helpful. I’m also now planning to take my diet to the next level and am working with an integrative doctor to do so.
Q&A: Fecal Microbiota Transplants
What exactly is a fecal transfer?
A fecal transfer is when you transfer stool from one person to another in the hopes that the healthy person’s “good” bacteria would override the bad. This is a funny video that actually captures it perfectly.
How does a fecal transfer help?
FMT puts good, healthy bacteria into a sick person to restore their flora.
How do you qualify for a fecal transfer?
You must have had re-occurrent infection that hasn’t been cured with 2-3 rounds of antibiotics.
How is the fecal transplant administered?
Three ways you can transfer the fecal matter: consume frozen pills (this is the newest way), insert a tube from your nose to your colon or through colonoscopy. I did it through colonoscopy which seemed like a no-brainer. You’re knocked out and when you wake up and it’s done.
Where do you get the stool?
There is a nonprofit stool bank called OpenBiome that has safe and well-vetted stool. There is a long criteria of how the stool is vetted and stored so you know it’s “clean”. A lot of the problems with stool transfers that you’re likely hearing about on the news are from untested stool.
Was it covered by insurance?
Since I actually did a colonoscopy during the procedure, it was covered by insurance, yes.
How do you prepare your body for a fecal transfer?It’s essentially the same prep as you’d do for a colonoscopy. You drink a laxative-like liquid that makes you clear out your system the day prior. It really wasn’t bad.
What’s the success rate of a fecal transfer?
Anywhere between 85-90% on the first try. If you have to do it a second time, the success rate is 95%.
Why is the fecal transplant successful?
Essentially you’re adding in TONS of healthy bacteria that will override the C-diff
When do you start feeling back to normal?
Well, I’m sure this is different for everyone but it took me close to a week. In fact 3 days in (while I was on vacation no less) I had to call my doctor almost in tears that I didn’t think it worked but he assured me that I needed to give it time and thankfully it resolved itself.
Does every hospital or doctor’s office do fecal transfers?
No – this is a newer treatment that’s not universally accepted. It is, however, available at some leading research hospitals with excellent success rates. I went to University of Chicago, but I know that other hospitals in Chicago like Northwestern Memorial Hospital and North Shore administer them.
Let me know if you have other questions.
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Kevin
August 5, 2019 at 4:49 pm
What a harrowing but ultimately rewarding experience. Thanks for sharing.
Monica
November 12, 2019 at 10:45 am
Hi Angie I found Your blog looking for information about FMT and MS. I have been diagnosed with MS since 2012 and I am looking for all possible methods that could help.
Many studies confirm that FMT improves MS symptoms, can you tell how many implants (bacterial flora) You have had a transplant? And did FMT improve your MS symptoms?
Have you seen improvement in digestion only?
Angie Rose Randall
November 12, 2019 at 11:05 am
Hi there. Sure, happy to provide more info.. I only did one transfer and was practically cured within a week. I did the transfer, however, because I had c diff, a horrible gut bacteria infection and standard antibiotics didn’t work. This infection ultimately affected my MS – not the other way around, if that makes sense. My digestion is now fine but it was before the infection so I just believe that the FMT got my body regulated again. If you’re looking to control MS symptoms, I would focus first on medication or diet (perhaps removing dairy and gluten). Please let me know if I can help answer anything else.
Allison
December 6, 2020 at 1:10 am
Hi Angie-
Thank you for sharing your story, You wrote that within a week you felt practically cured. Was that cured from the bacterial infection or MS/MS symptoms? What M.S. symptoms did you have that went away? I am currently going through my FMT (5-day FMT enema), wish me luck. Also curious if our lesions will still be there or if they will heal?
Wishing you well and continued good health
Angie Rose Randall
December 6, 2020 at 8:53 am
Hi Allison, so sorry to hear you’re experiencing this as well. I’m so glad that you’re in the midst of the FMT! It took about one week from the time I was done for my stomach issues to go back to normal. My MS stuff eventually eased up (brain fog, little off on my speech) but your lesions don’t disappear. They just normally “turn off” once your relapse is over. Thankfully I didn’t have any permanent problems as a result of my experience. Hoping the same for you
Sue
December 9, 2020 at 4:52 pm
Hello. I am confused. Are you saying the FMT cured or put the MS into remission? Do you consider yourself in remission now?
Thank you
Sue
Angie Rose Randall
December 9, 2020 at 5:49 pm
Hi Sue. The FMT cured my c diff. My MS relapse was just an aftermath of my son’s birth. We assume the relapse stemmed from the hormonal changes, stress and yes the gut infection. Hard to know what actually caused what but I do believe the c diff contributed to my relapse. Does that make sense? You’re welcome to email me if you have questions. Angieroserandall@gmail.com
Sue
March 2, 2021 at 11:46 am
Hello. Is your MS in remission now? Have you had a relapse since the FMT for any reason?
Thanks
Sue
Angie Rose Randall
March 2, 2021 at 11:48 am
Yes it worked and MS now under control thankfully!
Dan
December 6, 2021 at 12:46 pm
How did you get access to the therapy?
Was is just for CDiff? Is there a way to get this done without having CDiff?
I have long COVID, and I’ve seen studies where FMT can mitigate that.
Angie Rose Randall
December 7, 2021 at 10:00 am
Hi! Only certain hospitals offer it so I found one in Chicago (universitt of Chicago) who did. Their criteria was that you had to have c diff twice without it being cured. Sadly I didn’t know if they would other it to you otherwise but perhaps worth reaching out to a stool bank??