FMT Results Update - Two Years Later

Greetings,

I'm here once again to update the board and fellow sufferers on my experience with fecal microbacteriotherapy (FMT), or the fecal transplant. Once again, I completed a 10-day transplant protocol in May 2013 and was essentially symptom free within a few months. Two years later I am completely symptom free and off all meds.

One issue of note...now that things have "normalized" I can say that I no longer keep weight off as I did even prior to my colitis diagnosis. I was always lean even with an unrestricted diet. I used my brother as a donor and while he was not obese, he's always gained weight more easily than I have. Now, I am about 30 lbs heavier than my typical pre-colitis weight. This may simply be due to the fact I am older, but be aware there is research indicating that fecal transplant recipients may take on digestive characteristics of their donors. I have visited with two published doctors on the topic as well as a GI that specializes in liver transplants.

I've pasted my previous update from 6 months ago below in case you wanted to follow the older posts or get the complete story on my protocol.

I know some of you have tried this procedure to no avail. I'm not here to get preachy about it but just to present my story and hopefully encourage some of you suffering from this illness that a "cure" (or at least long term remission) may be available to some of you. At the time of my transplant I was coming off a 3-day hospital stay and my GI was encouraging me to consider a coloctomy. I am thankful I exhausted all options.

Good luck to you all.


----------------------------------------------------------------------------------------------------------------

Greetings to all my UC brothers and sisters out there. I hope you all are well or as well as can be expected with UC in your life.

This is my bi-annual post to the board RE my FMT procedure/results. I am coming up on the 18-month mark following a self-administered, 10-day, Fecal Microbacteriotherapy (FMT) procedure (poop transplant).

I first discussed my procedure with the board in July 2013, then updated the board a year later. Here is a link to my 12-month update and in it there is a link to my first post:

https://www.healingwell.com/community/default.aspx?f=38&m=3046950

So it's 18 months later and I am happy/relieved to report I am still completely symptom free with and taking no meds whatsoever.

Last week I had a check up with my gastro and she ordered a full spectrum of blood tests. Got a call back today that the bloodwork came back and there are no active inflammation markers - bloodwork completely normal. My doctor said "it's pretty amazing" although she will not (and I will not) say this is a cure...and she was quick to point out she had another UC patient who tried the same procedure and his condition did not improve.

Point of my post is to just say that you owe it to yourself to give FMT a try. Even if I wake up tomorrow with UC symptoms, the last 18 months have still been worth it. Again, it appears to have improved my situation but I realize everyone is different and every donor is different and it's not an exact science. But you owe it to yourself to at least try it.

I'll try to hang around the board the next few days if anyone has any questions. Good luck.

That's great to hear. Hope your remission is a very long one.

Hi UC_hater,

I remember reading your thread awhile ago. Very inspiring for anyone with UC and particularly for those who think about trying the Fecal Transplant.

Since then I started a new thread named 'Counting Success Stories of FTs' which aims to gather vital information about factors which contribute to the success of this method. So far there are 7 people on the list of the success stories and it would be great if you can be there as well. I decided not to add stories to the list unless they are reported on the thread by their tellers. There is a list of criteria that we are looking for but you can write more if you like.

People on the lists are asked to updated on their conditions once in awhile so it's like a longitudinal study. The thread has been active for a long time now so if you decide to add you story people who visit the board could read about it and look for more details where you initially reported it. In that way we can get a good use of your experience.

As you can learn from my last replies, I've been doing the infusion myself for the last week and a half and gained a lot of information from other users of FTs.

Whatever you choose to do, I am very happy to know that you've had such great success with FTs.

Sharron

i'd love to ask my mom for some of her finest - at 87, she's 10 x's healthier than me - if i was in bad shape, i might ask, but just can't bring myself to do it at this point - just seems weird somehow ???

sharron19 said...
Hi UC_hater,

I remember reading your thread awhile ago. Very inspiring for anyone with UC and particularly for those who think about trying the Fecal Transplant.

Since then I started a new thread named 'Counting Success Stories of FTs' which aims to gather vital information about factors which contribute to the success of this method. So far there are 7 people on the list of the success stories and it would be great if you can be there as well. I decided not to add stories to the list unless they are reported on the thread by their tellers. There is a list of criteria that we are looking for but you can write more if you like.

People on the lists are asked to updated on their conditions once in awhile so it's like a longitudinal study. The thread has been active for a long time now so if you decide to add you story people who visit the board could read about it and look for more details where you initially reported it. In that way we can get a good use of your experience.

As you can learn from my last replies, I've been doing the infusion myself for the last week and a half and gained a lot of information from other users of FTs.

Whatever you choose to do, I am very happy to know that you've had such great success with FTs.

Sharron

Sharon, I will post on that string as soon as I can. Thanks for doing that.

That's great news UC_Hater. I completed a 10 day FMT process in August 2012 and have been doing good ever since. I also consulted with the same facility. Im now 28 weeks pregnant. The pregnancy has been going great UC wise (much different than my first pregnancy in 2011). I have to have a repeat c section. I'm concerned about having antibiotics and how that will affect my seemingly healthy colony of bacteria. I still visit that same clinic although without Dr Sw***op it's just not the same. They won't even discuss FMT with me and I'm convinced it was so helpful. If I ever had the need to repeat the process, I wish I had supportive doctors. But I understand their hands are tied due to the FDA. I have a few questions for you about your process

1) what meds where you on to do your FMTs? did you take the antibiotics before the procedure? I was put on Aza before to get into remission. I was still in a moderate flare and I believe the Aza helped me retain the samples longer than I would have.
2) have you ever had a dose of antibiotics since receiving FMT? How did you react and recover?

3) was your Donor screened?

4) do you still visit that same facility for yearly checkups? Have you had a colonoscopy since the FMT? (The new doc there wants me to have one within 6 months to a year just to have a baseline check. Although I was always told before I didn't need one until 7 years after diagnosis, which was 2011)

I posted pretty lengthy posts at the time of my FMT about my procedure and prep. My donor was my husband. Four years older than me. Thin and tall build, regularly runs outdoors. I have also noticed a little weight gain but not "overweight" I chalked it up to being older and healthier. Of course, now that I'm pregnant I have weight gain but that is to be expected pregnant!

Always good to hear some success stories. Thanks for the update.