Josh’s Story

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Where do you live?

I live in Lodi California, the beautiful wine country.

How old are you? I am 27 years old.

What percentage better are you? I would say I am 95% better.

What was your diagnosis and what  treatments did you try before FMT?

I was diagnosed with ulcerative colitis when I was 24 years old and was hospitalized multiple times during the following years. The doctors told me there was no cure and I would have to continually take Asacol (9 pills per day) for the rest of my life. Prednisone was the only thing that really kept me going, I was on about 20 mg per day for almost three years, only tapering off for short periods of time.

When did you have your first and last FMT treatment?

My first FMT took place about 8 months ago.

How many FMT treatments did you need to see initial results and  the results you have today?

It took me a total of around 40 to 50 transplants, not sure on the exact number.

Were there other perpetuating factors in your illness or illnesses, or was your only issue a bacterial imbalance?

The only other perpetuating factor I can think of would be stress. A few years prior to my first flare I was under considerable stress.

Does your condition still need maintenance eg diet, supplements, medication etc to keep it in remission?

Yes, Diet has been the key to my continued remission. I have eliminated dairy, processed foods, red meats and anything that has to do with peppers. My diet consist of a lot of vegetables, chicken, eggs and sweet potatoes (everything is organic) . I also use L-glutamine and a hand full of other organic supplements. I no longer need any of my prescribed medications.

How and when did you first hear of FMT?

My sister had heard something about it while researching and told me about it. At first I thought It could only be performed in a hospital. After doing my own research I found the DIY FMT.

What factors did you take into account when deciding to do FMT?

The only factor I really took into account was that it could possibly heal my disease.  Also I have a very flexible job so that was very helpful throughout the transplants.

What did your doctor/s say?

I didn’t tell my doctor I was doing it until after I was 2 months into the FMTs. When I did tell him, I was kinda of shocked because he said “ Good, that should work.” I couldn’t understand why this information wasn’t being shared to everybody with a digestive issue.

What criteria did you use to choose a donor?

I used a donor questionnaire that I found online. I also made sure that I had known the donor for most of my life and that I could trust him.

How did you approach your donor and what was that person’s response?

When I approached him I told him that people were recovering from UC by performing the procedure and explained the details. Then asked if he would be willing to donate to the cause. He was more then happy.

What was your FMT experience like?

The first one was the hardest. This was just because it is far different then anything I had done before. The smell was pretty strong so I went and bought a painters respirator which worked wonders.

Do you have any funny stories from your FMT journey?

I will just leave you with, don’t let you donor eat peanuts, or any nuts for that matter.

What was your darkest moment when you were ill?

The depression that is associated with UC and Crohns is pretty severe at times. I had a couple moments of hopelessness which were pretty hard.

What sustained you throughout?

There was something inside of me that didn’t believe this was incurable. It didn’t make sense to me that out of no where, my immune system would go haywire and start destroying me. Later I found out that the immune system is just doing its job, It was the imbalance in my micro biome that was causing the issues. So the immune suppressants were just masking the problem instead of getting the the root of it, which the FMT did.

What are the top 3 things you most enjoy about your post-FMT life?

Definitely the variety of foods I can eat, I was so limited prior to my FMTs.

The next biggest thing is the energy and mental clarity.

Last would have to be the fact that I don’t have the thought of having a disease on my mind 24/7. Im just a normal guy now which is nice.

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?

In my situation, I measured the risk with the reward. I was skinny as heck, felt bad 85% of the time and couldn’t really pursue many of my dreams because of energy levels. So I thought it can only get better…

What advice do you have for someone trying to make a decision about FMT?

Well the evidence is pretty convincing that this procedure has change the lives of countless people, and you could be the next in line. I hope the best for you all.  Take care!

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Categories: fecal microbiota transplant, ulcerative colitis

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2 replies »

  1. My brother is doing his 3rd FMT , and read this stories, it is so encouraging. how long DID you leave the FMT inside of you?

  2. Hi Josh,

    Thank you for sharing your story! We’ve just started to look into FMT. My 23 year old son ( diagnosed with UC three years ago ) is very interested in having this done. He’s been on most all of the usual meds, and now the third biologic he’s been on, Sinponi, has stopped working. He’s a 2nd year Physical Therapy student in a Doctoral program and stress is a daily reality. We live in Fresno ( not far from you ) and I’m wondering if you’d be willing to talk to him and answer some of his questions. He’s currently in Alaska completing an internship at a PT clinic, but comes home in a few weeks. If you wouldn’t mind him making contact with you please email us.

    Thanks so much in advance!

    Sheri Lee

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