Flaring after long term remission with fecal transplants

I hope everyone had a good x-mas break. Some of you may remember my journey around 7 years ago where I used my wife as a donor and self-administered a fecal transplant treatment. You can read about my previous journey here:

Part I: https://www.healingwell.com/community/default.aspx?f=38&m=2349835
Part II: https://www.healingwell.com/community/default.aspx?f=38&m=2379824

Well, in the past week it looks like the condition of my colon is deteriorating. I knew I was always going to risk this happening and 7.5 years is a long time to be in remission. I hate to start speculating too much in why this would have happened but I did become very sloppy in how and what I was eating over the past 3 months prior to symptoms setting in.

I think it's important to post this for transparency so that you get a complete picture of the story. I'll keep you posted on what I'll be doing. At the moment using Colifoam and eating Asacol. I'll probably schedule a meeting with my GI next week unless things improve over the weekend

Current symptoms: Some blood. No urgency. Formed stools. 2-3 BM/s day.

Post Edited (curl3d) : 2/3/2019 11:39:47 PM (GMT-7)

Thanks for replying iPoop. I remember you from when I posted my first series of FT posts. Hope you're doing ok!

Sorry to hear about the set back. But 7.5 years in remission is great. Are you thinking about doing FMT treatments again?

Hi Curl, I've read your FMT threads many times while gathering info for my own at home treatment. Sorry to hear you are experiencing symptoms again, I wish you a speedy recovery!!

For the duration of your remission were you always on Asacol and some form of SCD? I have heard of miraculous FMT cases of people having 7 year + remissions with no meds and eating whatever they like. I used to aspire to that level of remission and as a result hit some roadblocks on my FMT journey by going off diet and off meds prematurely. I know FMT works for me while I'm doing it but I'm still trying to figure out the best method for maintaining remission in the long haul. Looking to your for any advice theories on what led to such a great, long lasting remission?

Did you do your FMT during a full on flare? I read that you're supposed to wait until inflammation goes down before doing that. I tried a FMT last year and it made me a lot worse, but I think I'm one of the rare people they don't work on. I achieved remission through other means.

Ok - I'm starting the FMT's again. I'm still bleeding and have some urgency. Darker blood now so seems like the Colifoam is taking care of the inflammation at the end. A bit concerned that I won't be able to hold it in without prednisone but I'll give it a try for a week. If it doesn't work then I'll use prednisone.

My plan is to empty my bowel using strong coffee in the morning and then use Colifoam. Colifoam should be absorbed pretty quickly by the body so will try to do the FMT ~30 mins after Colifoam (or more if needed by my donor). Starting my log of events below.

Post Edited (curl3d) : 1/29/2019 11:36:47 AM (GMT-7)

Oh dear, that first attempt was a bit of a mess. Been a long time since I've done this. Need to get into the whole routine of how to fill the enemas and how to avoid getting it too messy. I managed to administer around 150ml (1.5 bottle) which isn't a huge amount but I guess ok as a first. Aiming for 3 bottles each time. Had to re-attempt like 4 times due to a clogged enema. Poor butt.

Post Edited (curl3d) : 1/29/2019 12:57:07 PM (GMT-7)

Managed to get another transplant done in the afternoon. A bit messy too but getting the routine going now so should be good tomorrow. So all in all 300 ml was administered today with half after breakfast and half after lunch

@MariaMaria zip lock bags sounds like a good idea. How much do you administer each time you transplant? (how many ml?)

The enemas I use are 4.5 oz. I heard from a naturopath to follow the rule of 4: 4 oz held in for at least 4 hours. I used to try and squeeze in 2 enemas a day when possible (9oz total) in hopes that it would maximize the effect but then I read this and stopped worrying as much about amount:

"Another interesting difference was that the studies that applied a so-called low-intensity approach (the Moayyedi study only used 8.3 g of stool × 6 weeks, and the Costello study used 100 g within 1 week) achieved similarly high remission rates as the trials that used a high-intensity approach (the Paramsothy study administered 40 enemas over 8 weeks using 187.5 g of stool per week). Thus, more stool is not necessarily better. It may be more important to find the right (most efficacious) single donor."

http://www.gastroenterologyandhepatology.net/archives/january-2019/recent-research-on-fecal-microbiota-transplantation-in-inflammatory-bowel-disease-patients/

Just heard an interesting thing out of an interview by Joe Rogan. Bacteria apparently have their own immune system that cuts the DNA of invaders. See https://youtu.be/HOTS0HS7aq4?t=4191

------------------------------------------------------------------------------------------------------
DAYS SINCE FLARE STARTED: ~22
FMT DAY: 3
SYMPTOMS: Not much urgency. Some darker blood on the paper when wiping but not much in the water at all. Well formed bowel motions.
MEDICATION: Asacol. Colifoam.
BM/DAY: 3-4
------------------------------------------------------------------------------------------------------

Sorry to hear that curl, hang in there! It's only been 5 days, improvement could be on the way. Hopefully the pentasa enemas kick in soon, if not are you considering prednisone? Don't be afraid to lean on the pharmaceuticals to get things under control, allowing the FMT to work better and carry you into a longer term remission.