FMT - successful so far, hoping to get off meds ...

Hi everyone, wanted to share my experience with FMT so far. I'm still in the middle of the journey and hoping my story has a happy ending.

Background: I was diagnosed with ulcerative colitis 9 years ago. I contracted a stomach bug while on vacation in West Africa 9 years ago. I had typical food poisoning-like symptoms for 24 hours. Once the bug left me, other symptoms started to emerge (blood, mucous, cramping). I was diagnosed with colitis 3 months later by colonoscopy.

Throughout the duration of my illness my condition has been mild-moderate with most of the disease concentrated to the lower 10 cms of the colon, but sometimes spreading as far as 30 cms. My drug regiment for the past 9 years has been salofalk (5-ASA) tablets 3 in the morning, 3 in the evening and salofalk enemas (5-ASA) every night. These drugs mostly worked for me, but I never felt like I was fully in remission. Instead they would get me to long periods of low inflammation (just a bit of blood and mucous, 1-2 bathroom trips a day). If I ever missed a dose of 5-ASA's my symptoms would worsen quickly. I suffered a handful of flares (8-10 bloody, painful BM's a day, lots of pain and urgency) when I would be put on prednisone. Prednisone helped get me under control but each time they seemed to be less and less effective, needing more steroids for a longer time in order to see relief.

My reason trying FMT is that I'm sick of being so drug dependant. I'm really hoping FMT can help restore the balance in my gut so I need less medication, or in a perfect world no drugs at all.

Round 1 - In October I did a 10 day course of FMT with my boyfriend as my donor. When I began, I was seeing a bit of blood, mucous and having painful cramps. Within 4 days all my symptoms disappeared. By day 7 I had run out of my regular meds and decided to not repurchase, naively hoping I would be done with the drugs for good. about a week after stopping FMT my symptoms came back - bit of blood at first, then a full blown flare.

Round 2 - I decided to try again in November. I got back on my drugs but was still seeing a bit of blood and mucous. Once again, by day 4 I was completely symptom free. I have been doing FMT's daily for 1 month now, while taking my daily medications. I have had no colitis symptoms since November 13 - something that drugs alone have not been able to do for years.

My next step is to taper off the FMT (every other day for 2 weeks, every 3rd day for 2 weeks, etc). I'm also going to try tapering off my meds, beginning by doing enemas every other night, every 2nd night, etc.

As I taper I will learn whether or not FMT can be a cure for me, or just another treatment method. Because my condition began as the result of a bacterial infection, and i've had success with the SCD and 24-hour yogurt in the past, I do believe FMT makes sense as a treatment method for my condition. I've gathered from other people on this forum that FMT seems to work better for those who have had the UC for less than 3 years. I'm hoping that by doing a long treatment method this time i'll have better results. I plan on tapering over the course of the next couple of months.

I wouldn't use the word "cure," and would continue your meds even when you feel well. UC is chronic, and will come back and flare again. Having a good maintenance medication regiment is key to keeping your remissions long, and your flares infrequent and mild. Without the meds, you will likely flare badly after a while (some can go weeks, months but it does catch back up with you). If FMT helps your symptoms then that's wonderful, a good tool to have for when you need it. It's not a binary, one or the other, but rather best to have a combination of things that work for us

I wish you luck in getting to good health. FMT definitely works for some people. it's probably the only treatment that I would have wanted to try, but my GI said some people actually get worse and I didn't want to waste anymore time, so I had surgery. Life after surgery is pretty good, no drugs, no doctors... I am very happy.

DBwith UC: I'm sorry to have offended you. I didn't mean to come across as arrogant.
I understand that in autoimmune diseases like UC the immune system has learned to attack the host tissue or commensal microbes. But this is not the natural function of the body. It's as if the body is misfiring, or malfunctioning. My hope is that science can begin to understand why this process begins in the first place and how to reverse it. Instead of this idea that it just happens, no one knows why and we will never figure it out.

In my specific case it seems that an autoimmune response was brought on when the microbial balance in my gut was disrupted first by a round of heavy duty antibiotics, then by a bacterial infection. I do not consider myself dismissive of science. The science behind FMT makes logical sense to me in at least some cases, and I'm hopeful it will work for mine.

MariaMaria said...
In my specific case it seems that an autoimmune response was brought on when the microbial balance in my gut was disrupted first by a round of heavy duty antibiotics, then by a bacterial infection. I do not consider myself dismissive of science. The science behind FMT makes logical sense to me in at least some cases, and I'm hopeful it will work for mine.

Many UC cases start after infection and/or antibiotics. The problem is that once the gut environment is interrupted, the immune system can become dysmodulated and gets caught in a vicious cycle. Whether that's permanent or not is debatable. Some people go into long-term remission / are basically cured by FMT. I have heard of others flaring though *because* of FMT. I think on the whole FMT is a very crude method that one day - maybe in 50 to 100 years - we will be able to replace with an advanced understanding of gut ecology. In the mean time it remains the best probiotic out there, so long as there are no pathogens in it.

Btw the definition of "cured" I'm using here is: reversion of cell morphology in the bowel to healthy, can eat whatever they want, bloods normal, no symptoms, colonscopy 100% normal for more than 10 years.

Thank you OhCrap!

Connor77: No I did not do the antibiotics before. I knew this was Dr. Borody's protocol, but I was having trouble finding a doctor to assist me with this process so I didn't have access to flagyl or rifampin. Before the first transfer, I used a fleet enema to clear myself out.
Yes I did get my boyfriend's stool tested. The last specialist I saw (of 3, all unwilling to participate in my experiment) said he couldn't order tests for him but advised us to go to a family doctor and say he was suffering from stomach problems ever since a trip to Africa a few weeks prior. With that story, we were given a requisite form to stool test for parasites. Came out clean. The specialist said blood tests weren't necessary since we are intimate partners and know each others medical history.

For my procedure, I use the sample as soon as possible after it's produced. I wake up early and make sure to clear my system before my boyfriend gets up. When he goes to the bathroom, he leaves the sample in a bowl, inside a large zip lock bag. As soon as he's done I go in and deposit it into a blender, add a bit of bottled spring water to the blender, and blend on low for about 5-8 seconds. I try to blend for as little as possible to maintain the integrity of the bacteria. Then using a funnel and a strainer I pour the mix into an emptied out 250 ml fleet enema bottle (picked this method up from UC_Hater on this forum - easier than an enema bag, and I like being able to dispose of it immediately after. Less to clean up). I clean the bathroom quickly before inserting the enema. Once it's been inserted, I do a 2-3 min headstand to let gravity help things move up the colon, then I lie on my left side or back with my hips elevated on a pillow for 1 hour. After that I'm pretty much free to go about my day. I hold it in until the next morning.

I thought I was having success with Bifido Factor probiotic Enema, I did it twice. The second one, I know i used way too much probiotic and had severe die-off or Herx reaction. I may try the probiotic enema thing again. I hope your success continues. This is one natural route I have not tried.

 How do I get my BF stool tested? Does he go into the doctors office and ask for it and what does he ask for specifically?

Thanks

Thanks for the support TroubledTurds!

Therearemiracles: My specialist told us no one would run a test if we told them the reason was FMT, because of FDA regulations their hands are tied. So on his advice, my boyfriend booked an appointment with a family doctor and said "I took a recent trip to South Africa and got a stomach bug. I've been having some diareah and cramping ever since, I'd like to be tested for any infections or parasites I might have picked up". He was given a requisite form, had to fill 3 vial things with stool, and dropped them off at the blood lab the next day. I would have much preferred being tested by a doctor who knew the exact purpose of what we were trying to test for. But it was the best solution given the situation we were in.

Limey - So glad the trial is going well! I'm from Toronto and have been following the stuff they're doing at McMaster. I wanted to participate but was told I'm not eligible because my condition seemed "under control". I look forward to seeing the results, keep us updated.

Hi Connor,
I am symptom free while doing FMT even without meds. My flare came about 10 days after stopping FMT and not using meds. When I started FMT again the symptoms resolved almost immediately. So I am not concerned that the FMT is triggering something. I've concluded that FMT helps my symptoms, my question now is whether it can help me long term or only while I'm doing the procedure.

I don't doubt what you're saying about the tests I got being inconclusive for every single possible parasite. In truth, I was quite confident my boyfriend didn't have anything but wanted to exercise precaution anyway and my specialist convinced me that this method should give me enough information to move forward confidently. For the record I don't advise anyone use this as a fool proof plan, someone else could not be so lucky and get quite sick from an undetected parasite in donor stool. I'm lucky that this was not the case for me.

I also tried the mushing-in-a-ziplock-bag technique at first but found it was too lumpy and would clog the enema. Blender is much easier. And of the people I've heard of who have had great results, most seem to have used a blender.