counting success stories with fts (continued)

Hi Lettryit, Glad your son made it home from the hospital and is doing well on the prednisone. Keep up the current meds, hopefully he will continue to get better. I would wait until inflammation is minimal and try FMT again. That's not to say he has to be in 100% remission before starting again, but if he's still badly inflamed the FMT might not do much/he may not be able to hold it.
I do think continuing FMT on a regular basis like 2x a month for a longer time period (Sky Curtis and her son did 3.5 years) could help keep him in remission longer this time, certainly is worth trying. Feel free to keep us updated on his progress through this thread, or you can start your own.

I'd recommend staying on his medications during a remission. Just because FMT worked once does not guarantee it will always work for him. Every flare is different in what works, and every remission is different in what you need to sustain it. FMT isn't a one-size-fits-all solution to everything in every disease-severity, in every scenario. FMT is yet another treatment option some have found success with, it's not an across the board guarantee for everyone.

Disease progression is the real devil-in-the-details, on why something that worked once might not work as well the second time. Yes, mild mesalamines might not be enough in the face of stronger disease progression. Much as FMT may no longer work in the face of stronger disease progression. We all try and hope, and move on to the next thing whenever it becomes necessary to do so. As UC is anything but predictable, rather UC likes to keep us guessing.

Hi Letstry it,
Sky Curtis did every day for 1 month.
Every other for 1 month.
Every 3rd day for 1 month.
Every 4th day for 1 month.
Every 5th day for 1 month.
1/week for one month.
Every 2 weeks for 1 month.
When they got to once a month they continued for 3 years once a month.

When they did this protocol the first time, they stopped when they got to once a month. Her son got sick again a few months later. So they started again, from the very beginning and decided during the second round that they would continue once a month for 3 years. She admits herself this was probably overkill but she thought better safe than sorry.

Don't worry if you can't do it everyday, I'd say do as much as you can in the beginning with the goal of getting him into remission. If the FMT does help get him into remission, once a week or a couple of times a month should be enough. As for how long you do it for, that's up to you. Everyone is different. Sky Curtis isn't the only one who had success with this, many people have using different tactics.

No problem! I'm doing very well. My bowels are in 100% perfect condition, no sign of colitis and completely regular healthy bowel movements once every day, same time every morning like clockwork. Never thought I'd get to this level of bowel health. I am doing FMT every other day, plus salofalk tablets (3 morning/3 evening) and specific carb diet. Next month I will go down to FMT every 3rd day. Not sure how long I'll keep going, I'm taking it slow and steady.
By the way, each time I blend my FMT I fill as many 5oz disposable enema bottles as I can. I usually have enough stool for 2-3. Then I freeze them. Before bed I defrost an enema in warm water that way I can do the treatment over night. This has made it much easier to fit into my schedule. I'm not stuck blending FMT everyday, it's more like once or twice a week. And doing the FMT is a simple bed time ritual at this point. With this routine I feel I can carry on FMT long term without any inconvenience.

Dear all, I just decided to have a look and so happy to see that this thread is still in use.

I'm still doing very well, no medication whatsoever and no need for more FMTs either.

I'd started this thread in order to provide information to anyone who thought of embarking on this route of FMT. At that time, I reported my own experience as I went along with the therapy and collected information provided to us from people who had experience it. I prepared a table with certain criteria in order to help us identify the crucial factors for success.

In term of our online research, I definitely did not achieve my goal since I did not get as much people reporting on their experiences as I'd hoped for. I wanted to end up with a list of at least 100 people on it. Nevertheless, there were quite a few people reported intensely and constantly on their actions and results and helped us to realize that this route lead to recovery for many of us.

At the time I thought that I would continue to write here and collect the information for the benefit of all of us. However, after I had suffered for so long with UC, I am very happy to be now quite off the all issue and not deal with colitis and FMTs. If anyone wants to carry on with the table and collect more information it would be wonderful.

For anyone who wants to know what worked for us, you can always look back and read all the replies and comments. There is a previous threat, with the same name but without the brackets, which has important information on it.

Wishing you a real cure of the horrible Colitis

Hi everyone. 5 years remission for anyone following. Wishing everyone all the best. Pete