This story, told by a father, tells of the recovery of his 17 year old son from Ulcerative Colitis using FMT.
Where do you live:
Concord, California, USA
What percentage recovery did your son achieve?
What was the diagnosis and what treatments did you try before Fecal Microbiota Transplant (FMT)?
My 17-year-old son was diagnosed in August 2012 with Severe Ulcerative Colitis. Initial treatment was probiotics, which only helped on a limited basis. Next they stepped him up to topical steroid and Lialda. This immediately put him in remission, which we thought was the end of it. 2 months later while still on this treatment he went into a severe flare, missing 41 days of school and loosing 25lbs. He was already a very skinny kid. Our doctor was the one who introduced us to FMT, he was trying to get approval to deliver FMT for UC which was taking a long time. We went to UCSF for a second opinion in December of that year, my son was still in a severe flare and this doctor wanted to start him on Biological (Remicade) which we were trying to avoid.
We had mixed feelings and were torn on what to do. During UCSF colonscopy they took a biopsy and detected C-diff. We asked UCSF doctor “does this mean he just has C-diff” her response was “no this is text book Ulcerative Colitis, often C-diff occurs secondarily in these cases.” He was tested 4 separate times prior to this and the tests had never detected C-diff. She immediately ordered a round of Vancomycin. The UCSF Doctor thought FMT was not looking out for the best interests of our son, so she pushed for Remicade. We took these findings to our primary Doctor and he was against starting Remicade, now that my son had C-diff he could easily get the FMT approved in the clinic. My son had a complete round of Vancomycin followed by Dficid, which ended 2 days prior to the first FMT. This helped calm his flare.
When did he have his first and last FMT treatment?
In March of 2013, my son had his first FMT via colonoscopy in our doctor’s clinic. Our Doctor was able to deliver 500ml all the way up to the small intestine. Then we followed up with 10 FMT’s at home. Then weekly FMT’s for 3 months.
How many FMT treatments did he need to see initial results and the results he has today?
He saw dramatic improvement after the first week and constantly improved each day, as of today he seems almost 100%. He is a teenager so its hard to get information from him.
Were there other perpetuating factors in his illness, or was his only issue a bacterial imbalance?
What maintenance is required to keep the condition in remission?
My opinion and my doctors opinion is eating probiotics everyday. Remember for 5,000 years we ate yogurts and fermented foods everyday, because this was only way to preserve foods. I just make 5lbs of fermented green beans and I will eat almost all of them. Not only do they taste good, the fermentation makes them easier to digest and vitamins and minerals more available. Eat organic living food. My son is now 18 so I have to force him to eat probiotics in whatever form I can get them in him. I think this is a big reason for his continued health after FMT.
How and when did you first hear of FMT?
What factors did you take into account when deciding to do FMT?
Our choices were Remicade or FMT, we decided on FMT first if this did not work we would try Remicade.
What did your doctor/s say?
Our Doctor is a huge fan of FMT.
What criteria did you use to choose a donor?
Blood relation, ages 5-35, a good intestinal history and little use of antibiotics.
How did you approach your donor and what was that person’s response?
His cousin was more than willing to help, we paid her 20 dollars a donation she was 11 years old at the time.
What was the FMT experience like?
No worse than going to the bathroom in a chemical toilet at a campground, in fact not even that bad. We did all the prep in the garage, so my son did not even deal with it.
What was your darkest moment when you were ill? What sustained you throughout?
Watching your child suffer is very hard, doesn’t even compare to his suffering, I thank God everyday for this treatment and hope he stays in remission.
What are the top 3 things you most enjoy about his recovery?
- My son’s healthy
- My son’s healthy
- My son’s healthy
That’s all that matters at this point.
What advice do you have for others to deal with the fear and (perceived) risk about FMT, in the face of scepticism from treating doctors, friends and family?
Our Doctors whole treatment was based on the least invasive therapies, and move to the next big gun after the less powerful were not affective. I had a lot more fear of Remicade and Surgery than I did of FMT.
What advice do you have for someone trying to make a decision about FMT?
Follow a doctors order and prescribed procedures.