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FT Trial update - halfway through

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Ulcerative Colitis
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Posted 10/1/2019 2:56 AM (GMT -5)
I've been doing a FT pill medical trial since the middle of June this year. Two FT pills a day. The change has been a 180 degree turn around. I'm impressed by how much things have improved and how much better I feel overall. It's hard to explain how different my life has become in just a few months time. I've gone from spending literally hours a day in the bathroom, to being able to exercise without using the RR and attend activities and do other normal things without urgency to go.
The issues I continue to have is some foods trigger symptoms if I eat out - especially bread. I think if I would return to an SCD diet that would probably make a difference as it did for me in the past. Also, I've gained slightly more weight, but it's probably because I'm eating more food now that I'm not sick all day long. I just had a colonoscopy a few weeks ago and the GI said it looked better than before I started the FT pills.
I thought some might be interested in hearing about this trial. I was on zero meds when I started as every kind I had tried in the past had terrible side effects and is what allowed me to be a candidate. Thanks.
Posted 10/1/2019 3:54 AM (GMT -5)
I invested a huge amount of time and energy in the FMT route and it ended up being near lethal for me, but I was an odd case. In the focus groups, we seemed to agree that the top-down approach was best for people with true intestinal dysbiosis. If the top-down method helped a UC patient then it likely meant that the origin of their colon disease was a sickly bacterial community further up... so undigested food was making it into the colon and causing inflammation. At least, that was the running theory at the time with a couple of doctors there. I haven't been in that group in a long time.

How bad were you flaring when you started the FMT? The consensus seems to be that the mucosa should be well on its way to healing before an FMT is attempted, otherwise there is no healthy mucosa layer for the new colony to attach to.

There was one guy in our group who could not tolerate gluten or lactose whatsoever since the onset of his IBD, and after doing top-down FMT for a month he was able to resume a fully normal diet again. Quite impressive.

I did the bottom-up approach only, and in hindsight I probably could've benefited from taking pills as well.

It's good that this treatment is helping you. Anything that gets your into remission is worth it! Maybe over time you will have fewer food sensitivities.

Can I ask who / where your trial is with?
Posted 10/1/2019 7:25 AM (GMT -5)
I was on FMT trial at one of our hospitals here in Canada and I could not say it did a great deal for UC but was fantastic at curing me of C-Diff that I had 4 times.
Posted 10/1/2019 7:27 AM (GMT -5)
Happy you're doing well Adventureuc. Being able to gain weight is a great sign of progress. What did the colonoscopy say, are you in a remission or just better than before?
Posted 10/1/2019 12:06 PM (GMT -5)
MarkwithIBDiPoop/Limey - I was sick. Really sick. Probably 15-20 BM's a day with blood, cramping and strong urgency. I couldn't leave the house sometimes because I had to keep going - especially in the AM. I still have symptoms but it's down to 3-5 times a day - maybe. I haven't had that in several years. Also, BM is starting to look like it's supposed to and not what I just ate (if you know what I mean)
I did the natural FT before along with SCD and it put me in remission for several years so that works too if one cannot get into a trial/afford it when it comes out on the market - but FT pills could be years away fromFDA approval.
The colonoscopy showed improved symptoms, reduced swelling but still present. I'm only about 3 months in so I think it's going to take a while to heal all the damage done.
Posted 10/1/2019 1:21 PM (GMT -5)
If you stop taking the FT pills for a few days, what happens?
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