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.