FMT Report

Hi all,

I recently went through an FMT process and thought I would describe it here. I used the CDD in Australia for the process as I really didn't want to do it "home brew" and figured I would probably only try this once so wanted to maximise the chance of success.

• Step one was to go on a two week antibiotic course. I talk about it here in this other thread
  
• That was followed by a colonoscopy and the first infusion. The idea is to get the FMT as deep as possible. You also take imodium pills to slow bowl movements - I didn't have a proper bowl movement until about 3 days after the first infusion.
  
• I then had one infusion each weekday after the colonoscopy for a total of 9 infusions (an infusion is an enema sized bag FMT)
  
• The infusion process takes about 40 minutes. You lie on an elevated bead at different angles for 35 minutes after the FMT is completed.
  
• The aim is to get the FMT as deep as possible in to the digestive track and then hold it for at least 2 hours. Anything longer than that is just cream. I was able to consistently hold it for 2+ hours with my "record" being 7 hours on the last infusion. I did make a point of trying to empty my bowl before each infusion to maximise the "stick" factor.
  

It has been a week now since my last infusion. I have observed the following:

• The ulcerative colitis has improved dramatically. I was able to eliminate one of the medicines I take entirely (oral granules) and my second medicine - a suppository - from daily to as needed.
  
• I still see mucous and sometimes blood but instead of that being the norm for every BM it is now the minority. Most of my bowl movements are fine. If I see blood it is very diluted which is different to the bright/dark red blood I use to see on the TP and sometimes in the bowl.
  
• Most surprising I have lost of a lot of food cravings I had previously and can control myself better. I love chocolate but I seem to have lost the taste for it eating small amounts just with my coffee and feeling sick when I try and eat the amounts i use to eat in one sitting. Ditto on things like potato chips and donuts. I am happy to have one but I don't crave it and I can stop easily. My kids were surprised I didn't have any donuts this week when I normally have a 1/4 of a box.
  
• My flatulence has gone through the roof. I hope this is a temporary thing. No embarrassing incidents or anything but my long suffering wife can live without it :) I actually suspect that this maybe the resistant starch I am taking. Post the first infusion the CDD recommends that you maintain a high-fibre diet to feed the new bacteria. As resistant starch has been shown to be the mega-food for gut fauna I have been taking that daily.
  

I have a follow-on checkup in 3 and 6 months time. The people at the CDD said that they won't be able to say if it is a success or failure until about the 6 month mark and I should expect "funny things" to go on down there - like extra gas, funny sounds, odd BM times etc etc until the new bacteria has (if) taken a hold.

The total cost was $7,000 AUD for the procedure. The colonoscopy was covered by my medical insurance but you could add another $1,500 AUD for that as well.

I will aim to update this thread in 3 and 6 months time and at any time that I see a significant change. I hope this is useful to people out there who want more FMT information.

I would recommend getting back on your oral granules (guessing pentasa). It's much too soon to consider going medication free. It's been just a week. If you've seen possible positive results with fmt, why gamble and potentially throw yourself back into a uc flare by stopping your medications?

Hi solomani, congratulations on your fmt procedure and I dearly hope it gets you into a long term remission.

Apart from the antibiotic treatment, did the CDD try to get your flare under control before attempting fmt's or does the CDD hope the fmt procedure alone will get you into remission?

Are you doing this fmt procedure with some consultation/co-operation of your doctor/GI? Do you need a referral from your doctor in order to see them or do you just get in contact with the CDD direct?

Does the CDD allow you the option to supply/select your donor or they only use donors from their own stool bank?

Did the CDD recommend a diet or dietician? Good nutrition is essential for the new bacteria to thrive.

Are you practicing any meditation or relaxation techniques for the mind and gut connection? Placebo sometimes can be a very effective healing path in conjunction with any of our treatments. Stress is a huge factor for me and my flares.

I am hoping you keep on taking your UC medications as this is an essential part of our fmt treatment. Do what ever it takes to get yourself out of your flare. Did you study the Briggs Protocol and have you heard about healing a leaky gut before?

There are a number of things that one can do to help them along the way with the fmt's to try and better their chances of gaining remission. So many people have relied on the fmt procedure alone to get them into remission and from what I have read that is where some clinical and home fmt's have become unstuck.

Thank you for keeping us updated on your progress. I am very interested in fmt as a part of our treatment plan for UC. :)

Cheers
Pete

Hi again solomani. Thank you for getting back to me with my questions as I never got around to contacting the CDD and wondered how they go about a few things. I read many posts by Sharron on here at healingwell about her fmt done at home and she became my inspiration to give it a try myself outside the clinics.

My UC flare was definitely in remission before I attempted fmt but I understand your reasoning why you have decided to give this a go now. I am concerned for anyone who drops their scientifically proven medications and replaces them with fmt whilst they are still flaring to some degree and glad to see you can see where we are coming from. I have dropped my salofalk meds only because I was on a maintenance dose already and had no flaring but the moment I feel a hint of change I will restart them.

Personally at this stage, I don't consider fmt a cure for UC but a maintenance method to keep it under control. I know there are people who claim they are cured after years of remission and maybe they are but I know it can come back with vengeance at anytime. I have the opportunity of a donor for the long term. I have been doing fmt daily for two months but will continue on for now and maybe later do weekly/monthly maintenance. I just don't want to let go of the unexpected good things that have come along with my fmt.

For the first time in my life I am regular in that I go to the toilet once a day every morning the same as my donor and I am not bloated. The pain in my joints and fatigue has stopped and that was a huge surprise. There are changes in my skin where I have not had eczema since starting fmts. Is fmt as a treatment method for UC a success for me, I will have to say yes at this stage as it has alleviated many of my other ailments that come along with the disease.

I really want everyone who does fmt some type of success or benefit. It is not something easy to commence/do that it isn't considered the norm by many but there is nothing the norm about UC either. All the best to you solomani, there are so many here both doing fmt or not who will be looking forward to your updates.

Cheers
Pete

solomani said...
Hi Pete, no problem. I decided to log the info here and how it goes because I could only find hearsay and incomplete reports from people. I suspected that many people stopped reporting here when/if the FMT failed. So wanted to keep a bit of a log over the next six months for future reference.

This is exactly what we need here so please keep us updated on your progress.

solomani said...
I actually have ulcerative proctitis which is a much milder form of UC. Drugs tend to control it well. However, I want to cure it if possible because I have a strong suspicion that the ongoing inflammation is causing secondary issues (like eczema in your case) so suppressing it won't cure the secondary and even tertiary illness. I also suspect I don't know the full extent of the secondary and tertiary affects.

For example, I have a spare tyre which, no matter how much weight I lose or how healthy I am I have never been able to get rid of it - when I weighed 79kg it was there, when I weigh 100kg its there. However, since starting FMT I have started losing weight there. If it completely disappears along with the UC then there is a link.

No one knows the full extent of what happens with fmt. I presume it may come down to the health of the donor and the recipient. For this reason I was excited when my donor offered. Being fit and of good health, both physically and mentally was essential for me. I can only assume the CDD would do the same in selecting the donor/s they used for you. I try to keep positive but realistic at the same time. I prefer to look at it as maintenance of UC rather than a cure just incase I revert back to how things were before. I wish you the best solomani.

Great to hear you're doing well. $7k+ a pop could definitely deter some people from giving this a try. It's a lot for a "maybe". Will you pay and do it again if you regress? I know health is more important than money, but in the case of a treatment that isn't 100% proven, I do not know if I could bring myself to spend that much money. If it were guaranteed to give me permanent results, that would be a different story.

I have seen a few people here have amazing, long lasting results. Hopefully you do too!! I wish more research on FMT was being done and that the information out there was more widely available. It's a shame that it's not an option for more people if it's 70% successful.

Glad you're doing well. Keep up with the canasa, as you're going to need a maintenance medication. If you continue regressing then add back the pentasa granules...

Hi, I have no other symptoms at all. Just some blood twice in the last week. I immediately treated each with a Pentasa and the next BM was healthy. My BMs are regular - basically 1 per day and healthy.

I can ring the CDD as needed and they don't give enemas for home use. I don't consider a bit of blood twice an issue. I have seen much worse over the last 25 years so have a good idea of when to escalate or not.

Thank you for keeping us updated on your progress solomani. Hopefully the healing continues.

Cheers
Pete

Hi Solomani,

I'm not sure if you will see this, as I know this thread hasn't been active in a while. However, if you do I was hoping to please ask a couple questions about the CDD.
Kindly LMK..

Thanks!

Hi all,
Had my 15-month checkup recently (12 months after the 3-month checkup). At this stage, after some testing, I can go two months without pentasa suppositories and 1 every 2 or 3 days is enough to control the symptoms. Symptoms, when treated, are in 100% remission. Without treatment I get some very light blood on the TP every now and then - usually takes weeks or months to see any symptoms. According to the CDD the colonies should be pretty solid now but it takes about 2 years to really know the effects. Either way, even if I have to have a pentasa suppository every now and then my symptoms have almost disappeared. I would say a 90% improvement.

Poopme, feel free to send me a message.

Desertfox, if I recall right it was 10 minutes on each side and 5 minutes on the front and 5 minutes on the back. The bed is elevated so your legs are higher up then your head.

Will check in again at the 2-year mark.

My FMT sessions finished in early January and I am now on a maintenance program where I go once a month for FMT and this is ongoing and not part of the original study that I was part of but the same hospital