Where do you live?
How old are you?
What percentage better are you?
What was your diagnosis and what treatments did you try before FMT?
I was diagnosed with reactive inflammatory arthritis and intestinal dysbiosis. My symptoms included constant intestinal pain and inflammation in most of my joints (including my feet, hands, shoulders, knees, and elbows). I frequently experienced nerve pain and I would wake up with my hands closed shut in a fist because of the inflammation.
What did I try? Geez. What didn’t I try….
- Steriods (worked great for the joint pain, side effects weren’t fantastic..)
- Most things dietary- including vegan and an autoimmune paleo diet (also worked pretty well)
- Long courses of antibiotics
- Every supplement and nutritional support you can imagine (glutamin, colostrum, fish oil in high doses, the list goes on)
- Low dose naltrexone
- I was encouraged to take plaquenil but I didn’t. The side effects truthfully didn’t sound horrible- I was just stubborn.
When did you have your first and last FMT treatment?
My first FMT treatment was May 2015 and my last FMT treatment was November 2015
How many FMT treatments did you need to see initial results and
the results you have today?
I did 22 treatments in total. It took until about Christmas time of 2015 (6 months after my initial treatment) for me to really see results in my joints. I did see an initial improvement in my intestinal pain and food sensitivities almost immediately.
Were there other perpetuating factors in your illness or illnesses, or was
your only issue a bacterial imbalance?
Not sure- it is hard to say what is linked to bacterial imbalance and what isn’t. I noticed a decrease in food sensitivities, improvement in energy and mood as well! I’m not sure if the latter is attributed to a bacterial imbalance or if the improvement in energy in mood was related to less pain and therefore sleeping and resting better.
Does your condition still need maintenance eg diet, supplements, medication etc to keep it in remission?
I try and stick to a paleo diet. If I eat too horribly I do notice some pain in my joints- though not nearly as severe and it certainly doesn’t last nearly as long!
How and when did you first hear of FMT?
From my naturopath. We were out of ideas- we had tried almost anything to get my joints and stomach to calm down- so she recommended looking into FMT.
What factors did you take into account when deciding to do FMT?
I’m pretty sure I had the same reaction everyone else does when they first hear of it… “You want me to do what?!?!”
Once I got over the shell shock, I really liked the idea of FMT because it seemed to be the one solution that got to the root cause of the problem.
Like any other treatment, I weighed the costs (financial and safety) and the benefits.
What did your doctor/s say?
My doctors were open minded- but not convinced. They were as supportive as they could be while staying within the confines of the law.
What criteria did you use to choose a donor?
I went to the Taymount Clinic in England- I didn’t get to choose my donor.
How did you approach your donor and what was that person’s response?
I had actually approached some friends and family before I made my decision to go to the clinic and they were all super supportive and more than willing to volunteer!
What was your FMT experience like?
Exciting and stressful. Exciting because this was my chance to be out of pain. Stressful because I had just paid $10k for my ONE chance! (it still baffles me that I paid $10k for poo!!)
Do you have any funny stories from your FMT journey?
Sure I can laugh now but at the time it was pretty horrifying… The first time I did my treatment at home I basically spilled it on myself- it was gross!!
What was your darkest moment when you were ill?
I guess the times I thought I would never feel like myself again were the worst. Prior to getting sick, I was active: I enjoyed yoga, surfing, running, and would do handstands pretty much anywhere any everywhere— I loved life and I felt like I couldn’t get enough of it.
When I got sick everything I enjoyed doing seemed unreachable. It hurt to sit, stand, walk, wash my car, and carry the groceries- let alone do the things I used to love.
It’s certainly still an uphill climb. Because of my constant inflammation, my wrists are still weak and it is still painful to do the activities I like to do.
I know my “worst” is not even comparable to many of yours, but I think at some level we can all relate. Our illnesses, no matter how severe, seem to turn our life a bit upside down and make us feel not so much like “ourselves.” For me, remembering how I used to feel was motivation to try and get back to that point again.
What sustained you throughout?
I think seeing the stories of other people who really turned their health around and knowing that I could do that too. I wanted my life back. I wanted to be active again without being in pain- I was pretty determined.
What best-practices do you use to keep your microbiome healthy now? (diet, exercise, meditation etc.)
I try and eat well. I am still playing around with my macros and my diet. I think a higher carb paleo diet is what works best for me. Though I have certainly cheated since feeling better (a bit too much)- need to get back to eating super healthy!
- Less Pain= More Sleep= Less Grumpy= Happy!!
- I don’t feel like my time is consumed trying to figure out how to feel better. My life is full of other “normal” distractions and I am perfectly okay with that :)
- My stomach doesn’t hurt every time I eat!!
What advice do you have for others to deal with the fear and (perceived) risk about FMT, in the face of skepticism from treating doctors, friends and family?
With any treatment you need to understand the risks and the rewards. FMT can certainly be risky if you are not careful in screening your donor. Do your research- there is a lot of great information out there and a lot of horrible information. Luckily this group does a great job at screening out the bad stuff!
As far as friends and family- talk about it openly! It will make them squeamish and, if you don’t take yourself too seriously, will make you giggle :) I would get into the habit out of telling people I barely knew about FMT— their reactions are usually hilarious!
With the doctors— prove them wrong and educate them. Many of us feel “cheated” by our doctors that only gave us the choice of surgery or medication with horrible side effects instead of treatments like this. If you have success with it, follow up with your doctors and tell them about it. Maybe they will become interested in starting their own trial!
What advice do you have for someone trying to make a decision about FMT?
I would carefully weigh out all your options and see which one you think is going to be the best decision for your long term health.