Where do you live?
Farnborough, Hampshire, UK.
How old are you?
What percentage recovered are you?
85-90% Most days. Occasionally this will slip down to 50-60% for a few days when in a mini flare but this is getting less and less frequent.
What was your diagnosis and what treatments did you try before FMT?
Ulcerative Colitis, Diagnosed Jan 2012. Symptoms started on holiday in Lanzarote with family and initially I thought I had a stomach bug. I was firstly put on Mesalamine and Asacol but unfortunately my kidneys didn’t respond well so as my symptoms got progressively worse my next option was steroids. I was on steroids July 2012 – April 2014 40mg tapered down each time to about 20mg before my symptoms would get worse again. Even at 40mg my symptoms were raging with countless toilet trips, urgency, bleeding and cramping. So it was decided November 2013 to add Immunosuppressants to the cocktail and hope that with my immune system being controlled and being on a high dose of steroids my inflammation would calm down.
Unfortunately things got progressively worse and January 2014 I was admitted to hospital and given steroids through Intravenous Drip every 6 hours for around ten days. I was then released and sent home to taper down the steroids again and was signed off work for a few months. I remained on Azathioprine.
June/July 2014 my hair started to fall out. It was most noticeable in the shower and when I would run my hands through my hair. I was still on around 25mg steroids so I was still experiencing mood swings, weight gain, insomnia and moon face. I was quickly switched to 6-MP instead of Azathioprine in the hope that it would slow the hair loss but it didn’t and so August 2014 I made an appointment with the Taymount Clinic for 2 weeks treatment in December (the waiting list was that long at the time) and I decided to come off all medication and try and manage the UC with diet to keep my hair and try and gain back some control.
Very luckilyTaymount had a cancellation early September and I was able to drop everything and run to them living just over an hour away. The hospital had told me to start thinking about having my colon removed as I wasn’t responding to treatment and so I knew that FMT was my only option left.
When did you have your first and last FMT treatment?
My first FMT was September 8th 2014 and my last was 2 weeks ago today. I now have FMTs every two-three weeks at the Taymount and this works very well for me.
How many FMT treatments did you need to see initial results and the results you have today?
After 4 or 5 I started to see changes and feel differently and after ten I was well on the way to where I am now. FMT wasn’t a miracle cure for me. I had to combine diet and supplements with FMT to see the best results. It took about 6 weeks to start seeing great results.
Have there been other perpetuating factors in your illness or illnesses, or was your only issue a bacterial imbalance?
No other factors, just bacterial imbalance, but the damage that was done in the first few years while I tried out different medications under treatment with the NHS meant precious time was lost and I’m not sure that my colon will ever recover fully from it.
Does your condition still need maintenance eg diet, supplements, medication etc to keep it in remission?
Yes – Everyday I’m tweaking and adding or changing things. I try to eat Paleo as much as possible and avoid the usual dairy, gluten and grains however it is hard so I do slip up sometimes. I also take Biomune, Glutamine, VSL3 and drink nutribullet vegetable juices to try and get goodness into me. I really believe that the FMT wouldn’t have worked for me without a diet change as well. The two compliment one another.
How and when did you first hear of FMT?
Many hours of researching on the internet led me to the Centre for Digestive Diseases in Australia, then I stumbled across the Taymount who are much closer to home. I first came across them on the Power of Poop website but it took me a while to truly believe in the science of it all. I remember booking the initial consultation and thinking ‘There’s no way this is going to work’.
What factors did you take into account when deciding to do FMT?
Nothing else had worked. The side effects of the medication were killing me. I felt like I aged 15 years in 3 and the hospital were advising a colostomy. I hate being told no and I just knew that there had to be something out there that could help me get better and keep me from having to have surgery.
What did your doctors say?
They were actually excited and happy for me but they advised me not to pay out for the treatment and suggested they would do it for me. The Registrar at the hospital then led me down a garden path, through no fault of his own, where he tried to get the permission of the hospital board to do the FMT himself but after a few months of pushing, they said no! I was gutted but in the long run I know now it was for the best and I’m in the best hands!
What criteria did you use to choose a donor?
Taymount use different donors and they do all the screening and checking etc. All I know is they are super human beings, very healthy and fit with great gut microbes and fantastic for helping people like me.
What was your FMT experience like?
I was a nervous wreck! I was terrified it wouldn’t work, that it would hurt, that I wouldn’t be able to hold it in. The nurses at the Taymount were amazing and put my mind at rest and over the 2 weeks I became more and more confident with the whole process. I imagine it would be a very different experience if you are doing them at home alone.
Do you have any funny stories from your FMT journey?
I was a total sugar monster throughout my teens and early twenties. I had to really battle against a chocolate addiction when I started having FMTs. The patient Liason Officer at the Taymount spent hours talking to me about diet and how to change what I eat for the better and she was shocked at how scared I was to give up chocolate and sweet things. On Day 6 of my first FMTs after all these chats she caught me buying chocolate in a shop beside the clinic! Ooops. To make things worse I didn’t have the right change and she had to lend me 50p towards it. I was mortified.. and didn’t eat the chocolate ;)
What was your darkest moment when you were ill?
Probably the day the hospital emailed me to tell me the board weren’t going to allow the FMT. I was going downhill rapidly after coming off all my medication mainly due to my hair loss and the terrible nausea. I had pinned everything on the treatment.
It was August and I knew I would have to wait until December to start the FMTs and there was a very high possibility my colon wouldn’t make it through. It was a really dark day. I remember it so so well. A few days later I got the call about the cancellation and everything took a turn for the better.
What sustained you throughout?
My amazing partner Morgan. Day after day of caring for me. He definitely has gone above and beyond what many other people would have done. . . and not for days, or weeks or months… but for years! The rest of my family are fantastic too and they give me great support.
What are the top 3 things you most enjoy about your post-FMT life?
SLEEP! Being able to sleep through the night without having to get up 3 or 4 times. Having energy. Understanding what it is to have a healthy diet and lifestyle.
Being able to spend time with friends and family and not worry.
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?
I think if you are desperate enough like I was you will just do it but its good to know the risks or the treatment and it was hard to really find any. If your life is being ruined by side effects of all the horrible mediations like mine was and your illness isn’t really getting better then you will push for it. If you don’t like that the doctors tell you to eat low residue diets to help your healing and put you on high sugar and dairy meal replacement drinks to give your colon a rest and you know that’s a load of rubbish then you will research and find that FMT is the best way to achieve a better life.
I don’t think there’s any advice I can really give as everyone has their own journey with this illness so I can only tell my story in the hope that it helps others.
If you are reading this article then you are already half way there!
What advice do you have for someone trying to make a decision about FMT?
Read, research and don’t take no for an answer. Get lots of different opinions and surround yourself with positive people who want the best for you. Book in a consultation with a FMT clinic or meet with someone who has done it at home.
When you weigh up pros and cons of FMT versus Medication the decision will be obvious.