This FMT success story is told from the viewpoint of 22 year old Jaimi and her father who championed the FMT treatment to save his daughter from surgery.
Where are you from?
Portland, Oregon, USA
What percentage better are you?
What was your diagnosis and what treatments did you try before FMT?
Severe UC was the diagnosis. At the time of the first FMT the treatment was the highest dose of Remicade every 6 weeks and the highest dose of prednisone…
When did you have your first and last FMT treatment?
August 8th, 2013. I’m still doing FMT but only twice a month as maintenance now.
How many FMT treatments did you need to see initial results and the results you have today?
I had FMT almost daily for about 6 weeks before colonoscopy showed 33% improvement to ulcerated colon.
How and when did you first hear of FMT?
An article from a friend about 6 weeks before we did the first FMT.
What factors did you take into account when deciding to do FMT?
It was our last resort before surgery…
What criteria did you use to choose a donor?
The donor was my 17 year old brother. He was suitable due to ease of access, youth (less exposure to diseases) and dedication to follow through…
We just told him that I needed his help and explained the alternative to not doing the FMT was surgery.
What was your FMT experience like?
Not fun … the entire colon was ulcerated so you can imagine using any kind of enema was difficult… It hurt and so I did only one at a time… Dad wanted to try two if not retained for more that an hour…
What was your darkest moment when you were ill?
I couldn’t even pray anymore… I had to ask others to do the praying for me…
What are the top 3 things you most enjoy about your post-FMT life?
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?
Keep in mind that the side effects of ANY regular medicine prescribed almost routinely for ANY other diseases or problems are MUCH more serious than ANY (possible) side effects of FMTs… In fact I don’t think in all this time I have heard of any PROVEN side effects associated with using FMTs when the donor was screened…
What advice do you have for someone trying to make a decision about FMT?
DO IT !!! The upside is SO much more than any possible downside that it just doesn’t make sense NOT to do it… Just have patience, participate in an FMT group like The Power of Poop, and don’t be afraid to ask for help when you feel you need others to assist you!
Jaimie’s father Mike tells his story….
My daughter has Ulcerative Colitis. She got her first symptoms about two years ago. It was off and on but always getting a little worse until June 2013 when she had to withdraw from school during finals as she was unable to take her last tests. The colonoscopy showed that her colon was COMPLETELY ulcerated… nothing clear. She was diagnosed as having ‘Severe UC’.
She came home to my house and we just tried everything. The doctors were saying that they would ramp up the medicines (Remicade, steroids etc…) to their highest levels but that after that the only recourse was surgery. We took care of her the best we could trying to give her the foods her doctors suggested etc, but nothing helped. Finally we committed to the SCD diet. It was very expensive and time consuming and I made so many mistakes in buying and preparing the food that I almost gave up.
Then, about the middle of July 2013, we found an article on curing C.diff. colitis using FMTs. After discussing with Dr. Mark Davis, a naturopath here in Oregon, we decided to commit to DIY FMT therapy to try and stop Jaimi wasting away. At this point she was continuing to lose weight, the doctors were not seeing any improvement and were suggesting surgery. They were VERY skeptical of the use of FMTs. We brought it up, not them and they did not encourage us to go this route.
Since Jaimi did not have C.diff. colitis, she could not do FMT through the hospitals because the FDA put a stop to that. So I decided to do the FMTs myself. I won’t go into the details of what this entails; suffice to say there is a definite “YUK” factor involved until we learned to adjust to the idea that it was a healthy, living, replacement biome for one that was failing.
Starting August 8th, we did 10 FMTs for 10 days…. no improvement. We then did FMTs every other day for a week. We then started the second 10 for 10 days again. There was no improvement for the first seven days but then she noticed a little less pain. After this second 10 for 10 we reduced to every other day.
On September 16 Jaimi saw her doctor. She had now lost so much weight that her doctors said they could not even do surgery because her weight was so low and it would be too dangerous. This brought me to the lowest point I think I’ve ever been. I gave up hope and just cried and had flashbacks about raising her, her life with me, all the hopes I had for her. I thought God was calling her home….
The very next day, September 17th, she had a colonoscopy to determine the damage. But instead of finding the completely ulcerated colon again (or worse), they found that the top third was healed and the bottom two thirds looked like healing was taking place there too!
The doctors were floored. So was I to be honest. What a turn-around. They said to keep doing whatever we were doing but that we had to get her to gain weight.
We started doing just that. We gave her high fat coconut milk and deep fried anything in coconut oil, as she found this type of fat the easiest to absorb. We’ve stayed with the SCD diet, making homemade yogurt, homemade soups and pretty much homemade everything.
Anyway …. God gave Jaimi back to us. She gained weight at about 2 pounds a week. By December 2013 she had gained most of her weight back!
My daughter’s healing probably started within the first week of FMTs…. but it was SLOW ! She didn’t “feel” the healing for about 3 weeks and didn’t “see” the results until about the 6th (remember she had SEVERE UC). To COMPLETELY heal probably takes 3/4 months – and she was on a STRICT SCDiet at the time. She has stayed on the SCD diet for now and does two FMTs per month. She has tapered off Prednisone but has stayed on Remicade and still does not know when she will taper off this. She’ll start tapering off the SCD too but that will be slow (over the next year). We think she’ll probably do maintenance FMTs whenever she manifests ANY UC symptoms
But the really great things are….
she can walk again
she can drive again
she can study and read again
no “15 times a day to the bathroom” ( down to 1-2 now ! )
no more pain!
She goes out with friends again!
Again… the doctors are amazed! The latest CRP test was down from 50 … to 1!
She went back to college in January and graduated in June.
Her life has been changed though. I wonder why she had to go through this. I wonder why my whole family had to go through this. A grace from God in ways we’ll probably never know. We all hope we can give back in some way to others who need encouragement and help!
Listed below are a few things that may be helpful to know if you are just starting to investigate using FMTs :
1. Call Dr. Davis (in Portland, OR). He is intelligent, thoughtful, empathetic and very forthright and honest… extremely helpful.
2. Get information from his brightmedicineclinic.com site (invaluable).
3. Give yourself TIME. Keep going at least as long as we did (my thought on this is that UC symptoms manifest because of an imbalance in the colon micro-flora and that ALL people with UC will eventually begin to heal if they continue a regular routine using FMTs (which is basically correcting this imbalance through replacement using the donors healthy biome.
4. Finally… I made mistakes. The biggest (I think ) was that I didn’t insist on her doing a complete cleansing fast and enema just before the first FMT (which Dr. Davis does recommend but she just didn’t want to do it). The logic of doing this is obvious but I think that even if you don’t do this you will still see results … you just won’t see them as quickly.
Thanks to all who have helped, and we hope and pray that others going through a similar experience will find courage and patience through Jaimi’s success…