Caitlin’s Story

fecal transplant for IBS

 

Caitlin is our first IBS success story, and hers is a particularly happy ending.

Where are you from?

Portland, Oregan, USA

What percentage better are you?

100%

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

I was diagnosed with IBS (officially with an unknown cause). I tried various antibiotics (which worked, but only while I was taking them), antimicrobial herbs (oregano oil, black walnut, garlic), dietary changes (gluten free, dairy free, GAPS diet, all of which helped but only made symptoms slightly better), muscle relaxers (to relax my colon muscles, which did not help at all)

When did you have your first and last FMT treatment?

I started March 20, 2013 and did my last one 4 weeks later.

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

I did 10 days in a row plus once a week for 3 more weeks. That was all that was required, I am now 8 months out and still feeling really great.

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

It seems that the only issue was bacterial imbalance (aside from my gluten intolerance, but I just don’t eat gluten and that way I’m fine). My gastroenterologists offered various other ideas, such as a nervous system disorder (causing my colon muscles to be in constant contraction) or some sort of autoimmune problem, but after the FMT all of my symptoms are gone so I don’t think those theories were correct.

How and when did you first hear of FMT?

From my naturopathic doctor

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

That it was my last resort, after 6 years of chronic pain, great expense, and a problem that was only getting worse, I felt like I had no reason not to try it. I believed it would work because antibiotics always seemed to help me (as did antimicrobial herbs, such as oregano oil), but only while I was taking them. I felt I needed to change my gut microfloral community and FMT seemed the best way to do that.

What did your doctor/s say?

Both of the naturopathic doctors I was seeing said that they thought it was a good idea for me. When I brought it up to my gastroenterologist he thought that it might help me but that he couldn’t do the procedure on me because it has only been approved for c. difficile, which I didn’t have.

What criteria did you use to choose a donor?

General health, good (daily) bowel movements, very limited history of antibiotic use (only once as a child), someone I trusted and who was willing.

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

I told her that I was thinking about doing FMT (she knew how sick I had been for years) and she offered to be my donor without me even having to ask her. She is a great friend.

What was your FMT experience like?

It wasn’t as bad as I thought. I did it all myself under the instruction of a naturopath who does it both in his clinic and gives instructions to his patients to do it at home. I chose the at home option because it was much less expensive and I thought I would be more comfortable. I always retained the FMT enema for at least 4 hours, sometimes overnight. It was a little hard to keep in for the first 30 minutes, but usually after that I could get up and walk around and do normal activities.

What was your darkest moment when you were ill? What sustained you throughout?

Over the 6+ years that I suffered from severe IBS, I experienced constant and sometimes debilitating abdominal pain (always in the upper left quadrant), diarrhea, constipation, joint pain, and chronic fatigue. The hardest part about it, aside from the stress and fatigue of dealing with pain, was the feeling of hopelessness. Every time I thought I was getting better (such as during and right after I would take antibiotics) it was incredibly devastating when my symptoms would return. I also started to become very afraid of not being able to have children, getting colon cancer, and just living the rest of my life in pain. Those thoughts, thoughts of despair and helplessness were very hard to deal with. I tried to never give up hope, but when I was in the grips of an attack it was hard to keep focused on that.

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

I have FOUR!

  1. Not being in pain
  2. Having so much energy
  3. Eating whatever I want without being afraid of it causing an attack (except gluten of course)
  4. Being pregnant (my son is due in a month!) I could never think about having a baby until the FMT, because I could never go that long without taking things like oregano oil to keep my symptoms at bay (which you can’t take while pregnant).

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?

On the surface it seems like it would be a somewhat risky procedure, but the more I think about it the less risky it really seems. As long as you have a healthy donor the risk is really quite minimal. People have been doing enemas for a very long time, so that part of it seems very low risk to me. As long as you are confident in the health of your donor, it seems there is only a potential up side. As for the gross factor, I got over that pretty quickly, probably after the first time. I just decided to detach myself from what it was and focus on the positive outcome. It seems more risky to take all those drugs than to do FMT, in my opinion.

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

I think that it is definitely something to do if you have c. difficile, but I think that is only scratching the surface of the potential use for this treatment. I myself did not have c. difficile, but it cured my IBS (which was always ruled officially as “cause unknown”). I had an indication it was bacterial from a Metametrix fecal diversity profile I had done on a stool sample, which showed abnormal amounts of certain bacteria as well as a positive response from taking antibiotics. I would say that if someone has IBS that responds to antibiotics like I did, then FMT is a good option.
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What did your Metametrix profile show?

My Metametrix stool profile showed that I was above the 90th percentile in Streptomyces species and above the 80th percentile in Bacteroides and Mycoplasma species (all of which are obligate anaerobes). Also, my Bifidobacter species were low (20th percentile). The profile does not say whether any of these are known to be harmful or not, and even within each type there are many species, so it is hard to interpret. My naturopath did say that most bifidobacter species are helpful, so having low bifido was maybe a bad thing.

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