Jennifer’s Story

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fecal transplant for ulcerative colitis

 

I live in rural Manitoba, Canada, under the canopy of an endless, ever changing prairie sky.   I am 40 years old and find myself between 95% and 99% improved in health as a result of FMT treatments and the necessary parallel behaviours that are recommended to accompany these treatments.

I was diagnosed in September 2010 with Acute Ulcerative Colitis.  My symptoms had started immediately following a 2 week dose of broad spectrum antibiotics.

I went through a really tough 3 years of very limited energy, brain fog and domino effect additional autoimmune disease/condition developments.  In 2013 I was hospitalized 3 different times for a total of 3 weeks.  It is all a blur as to at what points in those three years I tested positive for c-diff three times.  Each time I was treated with antibiotics.  (Knowing what I know now about FMTs and c-diff I wish so much that I had known then…and received the treatment through colonoscopy…).  My quality of life varied a lot but remained miserable at best.  No matter what I was doing (working, socializing, doing errands…) all I could think about was how soon I could crawl back into my bed.  My life was run by the location of toilets and at the worst of times I had urges to go up to 30 times a day. I had no energy to be proactive in my health and did virtually no research on what could help me.

When all medications failed (last one tried was Remicade) I was declared to have “steroid dependent Ulcerative Colitis” and was released from my GIs care into the case load of a surgeon.  The first of three surgeries to remove my colon was booked for March 25, 2014.  I was dependent on 40mg of prednisone and had been taking it at that dose for most of the time since July 2012.

Hearing about FMTs in enema form for the first time in December 2013 (I had previously heard of the pill form), I promptly took a sick leave from work and spent the next 3 months focusing on my health.  Being so dependent on prednisone I chose an aggressive course of FMTs based on the wise feedback and experiences of fellow sufferers on the Facebook FMT support group (this group saved my life…I call the group members my “Dr.s”). I did daily FMTs for those 3 months straight.  The first 1.5 months I did fresh enemas – driving 1.5 hours round trip to pick up a fresh stool every day and implanting it within 3 hours of having been produced.  My days were controlled by the stool schedule of my donor.  After about 1.5 months I started doing some frozen treatments and they seemed to be just as effective.

I very quickly noticed improvements…I wish I had documented them more closely.  I continued to do daily treatments for 6 months (!!!) and in that time was able to return to work with much improved health and by July 1, 2014 I had completely weened off of prednisone.  I reduced my treatments to every other day for a few months and have now being doing enemas once a week since November, 2014.  March 1, 2015 I will go down to one every second week.  Based on the experiences of other UCers, I think it will be a while before I stop doing FMTs indefinitely but at this point I am confident that I can plan extended travel and skip a few with a low chance of issues.

Diet and supplements according to Briggs Protocol are important parallels with my FMT treatments.

About 2 months ago I continued to have inconsistently formed stools as I had for the first 12 months of this journey.  I felt great, was going 1 – 3 times a day but the form was a lottery every day.  At that point, because I had two healthy, tested donors at my disposal I followed some of the anecdotal reports on ‘the group’ and decided to use only donations from the male (non related) donor (99% of previous donations had been from my female donor, a blood relative).  Since changing to the male donor things have continued to improve…I’m just waiting for a few more weeks to pass and I’ll be confident to report 99% health if it continues as is!  Amazing!  Definitely something to consider if you try FMTs with limited success; can you source a different donor?

I was really blessed to have an easy time finding 2 willing donors.  I am even more blessed that they have stuck with me in this journey for 14 months!  I will never be able to fully express my gratitude or even begin to repay them!

I also was really lucky to have a supportive GP.  Although she can’t endorse FMTs, she was very supportive in testing my donors.  Now, she delights in my progress…and listens to my reports, happy for me.  I can’t wait for the day medicine figures this out so we can address our health issues with scientific precision!

For anyone considering FMTs, join the Facebook support group and take full advantage of the broad range of experience, wisdom and research represented by the thousands of members from all over the world!  This is a tricky business but you CAN figure out your own course of treatment…just don’t give up too easily!

After working incredibly hard on my health for 14  months, approaching the 1 year anniversary of my ‘non surgery’ date, I feel on top of the world and have changed my life in so many ways.  Once you have lived in such a dire condition for so long, you can’t help but be on some kind of a high when life is SO very good EVERY day!

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Categories: fecal microbiota transplant, ulcerative colitis

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7 replies »

  1. This is really great news! To go from being on the brink of having your colon removed and returning to good health is just fantastic. Although I am new to FMT, I have been aware of the idea of intestinal dysbiosis (an imbalanced gut microbiome) for almost 20 years. I hope to undergo FMT myself as soon as possible to treat multiple food in tolerances, chronic fatigue, irritable bowel, anxiety and tremors. The long duration of Jennifer’s FMT therapy it’s kind of daunting to me though. I’ll have to be concerned with keeping a roof over my head while being proactive about FMT.

  2. Hi i could only find Sally not the face book group. I suffered from ibs for 3 years now or more its been hell. Nice to see some people get rid og it.

    Somebody know where the fb group is.

  3. Rad, I am pretty sure I used an excessive FMT regime. However, I wanted to be sure that I had tried everything I could the first time around and SO much was at stake. I believe that with the right donor and considering many other variables of your condition (for example I was steroid dependent) you can set a course of treatment that makes sense for your condition and your life (the Facebook group “Dr.s” will give excellent advice). My course of treatment was very involved, took a ton of commitment and held many challenges but I still have no regrets for being so aggressive with it.

  4. It’s a private group so you will need to send a friend request to Sally Brown and you will accepted into the group.
    http://thepowerofpoop.com/fecal-transplant-facebook-group/

  5. Jennifer, very encouraging as your journey sounds so similar to my son’s except he’s the pre-FMT poster boy. Can you share how you were able to find your donors? My son would line to try medically introduced FMT but is shying away from DIY.

    Lynn

  6. Lynn, I just asked people that I observed treating their bodies well. The two individuals had limited antibiotics and good health, great metabolisms and clear skin, healthy hair….;-). For me it was not a challenge but should I need to find a new donor in the future I would find that daunting…

  7. Hi Jennifer,

    I am hopeful after hearing your story. My son has Chrohn’s and we are hoping this treatment works. We also live in rural Manitoba. Did you do the treatments yourself? Were the doctors supportive? My son would rather have a doctor perform the procedure.

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