Jenny’s Story

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fecal transplant new zealand

This is an interesting success story for a few of reasons. Firstly, it’s our first story from New Zealand. Secondly, the success occurred in an older patient with bad UC suggesting that age and severity do not necessarily preclude healing. Thirdly, and importantly, it’s an example of how changing donors can make a difference. It also supports what we are discovering in the FMT Discussion Group, that people with inflammatory bowel disease often need multiple treatments over an extended period, to maintain their improvement. The disease often responds well to FMT, but then regresses without further support, in the form of further FMTs, diet and sometimes medication.  It seems that a long-term multi-faceted approach to healing UC is required for many. This is clearly why the research on UC and FMT is showing mixed results. Scientists, researchers and doctors please take note. 

Where do you live?   South Island, New Zealand

How old are you?  62

What percentage better are you? 99%

What was your diagnosis and what treatments did you try before FMT?  I was diagnosed with UC when I was 50 in 2002. over the years I have been on Pentasa since then. Varying doseage depending on how bad the UC was. Has also had Predinsone, Azathioprine and 6-MP at various time. The Azathioprine and 6-MP treatments didn’t last too long as I couldn’t take the side effects. In July 2012 I started infusion of Infliximab because a colonoscopy showed that the colitis was severe and affecting all the bowel except the right ascending portion.When on Infliximab I was also taking Pentasa 4 g per day, nothing else.

When did you have your first and last FMT treatment? December 2013 I did FMT every day for a month, then a week off because of holidays, then continued with another month of FMT.  After that I went a month with no FMT and as I was experiencing some UC symptoms did another period (6 weeks) of FMT. It was during this last period I changed to a second donor. After a colonoscopy in August I did 3 days FMT just to take advantage of a clear bowel.

How many FMT treatments did you need to see initial results and the results you have today?  I noticed a marked improvement after a few days, but as after the first two months of FMT, although things were heaps better than pre influsion, I still wanted more so changed donors.  My first donor was my husband and so I thought I would try it with a younger donor. My son obliged and a few days after starting using his donation it did improve again to a state I was happy with.

Were there other perpetuating factors in your illness or illnesses, or was your only issue a bacterial imbalance? No other factors.

Does your condition still need maintenance eg diet, supplements, medication etc to keep it in remission? At present I am on Pentasa 2g daily. I plan to stay on this as a precaution and because we are planning on travelling overseas shortly.  But as I have had my last infusion of Infliximab just over 2 months ago it may be some time before any protection that provided is removed from my system.

How and when did you first hear of FMT?  I frequently searched the internet for “cures” etc for Ulcerative Colitis so read about it on line around mid 2013.

What factors did you take into account when deciding to do FMT? I didn’t want to spend the next few years tied to the hospital every two months. Also the side effects from the infusion were getting worse all the time. And ultimately I didn’t want to end up having my bowel removed.

What did your doctor/s say? My local GP was very good, and even did some research himself.  The gastroenterologist wasn’t so keen, but as I had done lots of research and spoken to a microbiolgist I felt confident about doing it and felt I had nothing to lose, but possibly a lot to gain.

What criteria did you use to choose a donor? I downloaded information off the net with instructions re this – info from Power of Poop and Dr Borody protocol. So chose someone who was healthy and that I knew had a good background.

How did you approach your donor and what was that person’s response? As my first donor was my husband it was easy as there was a lot of discussion between us re my health.  As to my second donor, well that was my son, so he too knew what I was doing.  He lives about 5 hours away so I went and had a holiday at his place and also brought back frozen poop to use at home.

What was your FMT experience like? I didn’t mind doing it. Just took it as part of my daily routine for the few months I was doing it. Sometimes I couldn’t hold it in very long and wondered if it would work, but my fears were proved groundless.  In fact when I saw my first ‘normal’ poop I wanted to shout it from the roof tops, but restrained myself to telling my friends about it!!

Do you have any funny stories from your FMT journey? Fortunately no. All went pretty smoothly.

What was your darkest moment when you were ill? Well I wanted to die. Each morning when I had to go to the toilet was sheer agony

What sustained you throughout? Because I started seeing positive effects almost immediately I knew it was working and worth continuing. Also reading other positive stories of FMT helped.  In fact I very rarely read anything negative about FMT.

What are the top 3 things you most enjoy about your post-FMT life? Feeling normal again. Not having to be reliant on so much medication along with the their side effects. Going to the toilet and seeing ‘normal’ poop in the bowl!!

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?

As the microbiologist said to me – “Go for it, you have nothing to loose and much to gain. Also it is being done more widely than you realise.”.

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

Do your research. Think of what the future will be if you don’t try it. If it doesn’t work for you at least you will have had the satisfaction of knowing you at least tried.  Also now there is more and more evidence to prove it is helping so many people.

 

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Categories: fecal microbiota transplant, FMT success stories, ulcerative colitis

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8 replies »

  1. Thank you Jenny for sharing your story. I am very happy to hear that you have gotten such benefit from this therapy. Your story is not quite clear on one point to me. Is it the case that your last FMT administration was August? I am wondering if in your case after multiple ‘sessions’ of FMT administration your immune system is now finally accepting the donated microbiome. There are so many unanswered questions on this subject as I am sure you know. We can only learn from one another!

  2. Yes it is good to learn from one another on this. I appreciate all the stories that various ones put on line. Actually I got it wrong as to when my last FMT was. The record is Dec 2013 1 month of daily FMT; a week off then another month of daily FMT; then after a a few weeks no FMT another six weeds daily FMT March-April. It was during this last session I changed to donor 2. Everything was good. I had known that even while with donor 1 things had improved dramatically and then with donor 2 it went from good to very very good. I am sure my bowel had accepted the good bacteria by then. Then after a colonoscopy end of June (not August) 2014 I decided that as I had a lovely clean bowel I would do three more FMTs (using frozen poop) just to ensure that things stayed well. I am sure that this wasn’t necessary but decided it wouldn’t hurt to do it. My poop is still looking good and I am also feeling good.

  3. Hi Jenny ,

    I am very happy to hear that fmt worked for you. I have son 8 years old and has UC for almost 2 years. It affecting his schooling, my career in stake as he is in hospital every 2 months for 15 days. I have lost hope and searched and read internet like crazy boy still spectical about FMT. After reading your post, I am planning to try this and we are based in Sydney. Doctors are of no use to me right Now. Kindly if you let me know your email I’d at lgp_patil at yahoo.com so that I can communicate with you if I have any doubts. Thanks raj

  4. Hi,

    My daughter is 30 years old and has been suffering with crohn’s colitis for two years. Today at the specialists office we were told that whole colon is damaged from the flares. Her markers are at 29
    which is severe. Since diagnosed she has battled the disease her natural path and natural meds.
    Today the specialist has advised her that she should take Remicade and Humera two heavy western
    medications, or risk having her whole colon removed. My daughter has been considering trying a fit.
    but we would need to travel from Canada to portland oregon in the us. This treatment is not available for crohns only for C dificile. We are confused, is it the right way to go, by waiting to take western meds
    is she risking continuous damage , what are the cost for Fmt. Her and her husband want to start a family
    but have been told not now because of her condition.

    What does anyone think,any advice.

  5. Hi Jacqueline

    I am sorry to hear about your daughter’s UC. It is a nasty condition. My suggestion is to do lots of research. This site is an excellent one with lots of information. The cost is minimal dollar wise, but priceless in terms of health. From what I have read it seems that FMT helps most people, most of them in a dramatically good way. The sooner you start the process the sooner your daughter will see benefits. Look at the possible benefits of doing FMT as opposed to not doing FMT. Once a colon is removed there is not going back. The majority of people who do FMT do it at home. It is very easy as shown by the video clips on the subject. All the best for your daughter’s recovery.

  6. Hi jenny,

    I am from New Zealand but living in Hong kong and am very interested in this treatment. do you mind if i reach out to you to ask some questions?

    Thanks
    Nick!

  7. Dear Nick

    Sorry for the delay in replying but I am presently travelling in South America and haven’t been checking the net very often. I would be pleased to answer any questions. Leave your email address and I wil get in touch.

    Jenny

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