From Sinker to Floater my FT

Hi everyone,

I started doing FT on Sunday the 1st of april.

My donar is a Floater and I am a Sinker.

My symptoms at the beginning of the FT procedure had become multiple.

After years of IBD (chrons/UC), chronic fatigue and bloody D. I developed severe food intolerances which cummilated in Anaphylaxis episodes. I have been on the Failsafe diet for some time which is very limited but has stopped the Anaphylaxis but not reduced my IBD symptoms, like the allergist said it would.
I was hopeful of the Failsafe diet working as many IBD and Chronic fatigue sufferers benefit from the Failsafe diet.

I now carry an Epipen with me everywhere along with my roll of toilet paper.

My poop has been a pale yellow colour for a long time I either had D or long pencil thin jagged cookie cutter shaped things.

And I have always been a sinker!

Cramping and Fatigue has ruined my life and I am desperate for remission without surgery.

Well how have I progressed so far?

With many ups and downs this past two weeks I believe a difference has been made!

I used an enema bag and strained the poop in Saline solution with Inulin powder to make about 500mls.

I have found holding the implant difficult and have been laying down a lot, I need to lay down for at least 2 hours to feel safe of not loosing the implant. I have realised after about 3 hours I can relieve myself of gas.

I have never had so much gas before. I could become my own methane plant.

And my poop Floats. I find this aspect exiting, if the procedure works long term I should become a Floater like my donar, for me this is an objective measure of the success of the transplant.

On day 3 my donar did not supply and the next day my poop was back to being pencil thin and yellow and was a sinker. To my disapointment.

On day 12 which is today I think I have had a breakthrough!

My poop has changed colour! It is now chocolate brown! and a big firm log Floater.
OMG never done a poop like it before! No pain No cramping and it came out with such ease.

I believe something else is happening also, I have suffered from irregular sleep for years accompanying pain at night in my joints and tend to go to bed late as sleeping is difficult and painful.

Though the last few days when the sun goes down I have started to become very tired and falling asleep on the couch.
I have been going to bed real early which is unusual for me and waking just before the sun comes up, my joint pain seems to be reducing also and I am getting a sounder nights sleep.

I was reading that inflammation and sleep are a vicious cycle, I am convinced the FT's are reducing inflamation, the poop is a great indicator but so could this tiredness and readiness for sleep.

I am wondering when to stop, I was thinking of giving it a rest after the 13th but not sure considering my poop only changed colour today but thought a rest from it may be good to see if any bacteria survive ie; still have chocolate floaters :)

Regardless I will keep people posted on weather this sinker becomes a Floater for good!

Thanks for reading
JohnScott

Sounds great so far, congrats on the progress! If I can add anything, I think 500ml is waaaaay too much for anyone to try and hold. You'll be safe using half of that I'm sure. Keep us posted, glad your feeling better.

Johnscott, it sounds like you are doing great. If you are seeing improvements I would definitely continue with daily FTs. This is a very stubborn disease and will likely take a long course of FTs to repopulate your colon. We have been doing FTs on my 8 yo son since early December 2011 and we are still doing them every four days. We have done 90+ FTs. I think the fact you have come this far it would be a shame to stop and then this nasty disease comes back.

I agree with trojen 500ml is a lot. I know of a 22 yo who used 150-200ml very successfully. But again he did many months of FTs and has been med free for over a year now.

Interesting you used colloidal silver. How do you think that worked?

Good luck and keep going!

Post Edited (Edbar) : 4/11/2012 8:43:12 PM (GMT-6)

Hey Johnscott,

I think 250 ml sounds like a good move. Yes, my son's energy level shot through the roof after starting FTs. He felt so much better almost immediately. We did daily for a week, then weekly for a few months. I should add, Jack has been battling recurring strep and has had to go on abx 4-5 times since starting his FT protocol. He has remained in remission during this time. We do however, make sure he gets another FT after his abx are finished. I think this is a good sign of a new gut flora working.

My opinion is changing a bit however. I"m starting to think FT will colonize quickly and effectively if your donor is compatible. Compatibility is a mystery as to why some work and others don't? I do believe you should do daily FTs until symptoms subside and the colon heals. However, I think an ongoing tapered protocol is fine at that point.           

That said, I've heard of some UCers who put themselves into a long term remission using FT, only to have some "minor" symptoms return down the road. In those cases, I know they didn't continue on with a tapered FT protocol. They simply got better and stopped.....so I think that points to a needed ongoing protocol of at least a tapered regimen. How long???? 

The jury is still out of course on all of this, but it is great we have this forum to talk about personal experiences and compare notes. Keep up the good work, congrats on the success thus far, and keep us posted.

Post Edited (trojen) : 4/12/2012 7:17:11 AM (GMT-6)

Interesting. I'm not sure about compatibility though I think the healthiest person with the best gut of a similar ethnic background might be the best (though I'm not even sure about that just a guess like most of this stuff)? As for severity of disease - I've seen and heard of people responding to FT who were on the verge of surgery with very severe disease. I don't know if that's a factor, didn't seem so from barody's work. Is that what you meant Edbar?
I think the correct protocols, response time etc is so up in the air, I'm afraid the trials going on are going to show a limited amount of success when in fact it's just that enough infusions under the correct circumstances were not done. But, it's definitely a step in the right direction. I believe Dr Barody is still developing/refining his protocol (maybe that's why he's not publishing)?
Trojen, I'm thinking of Jack too - hope he made it through his last round of abx without a hitch?
s

thanks for all the responses.

I'm not sure about compatibility and how one would be sure of compatability (would it be like blood type etc?)

I know for sure that my donars bacteria are totally different to what mine have ever been. My family are all sinkers and my donars family are all floaters? I partially chose my donar because of that fact.

I think the more varied bacteria from different sources would be the best chance.

trojen it is great to hear about Jacks energy levels, I am sorry to hear he still has to continue abx but it great news that the FT's are keeping him in remission. I would have to agree that giving up to soon may be a problem, thinking it has worked when the bacteria has not fully colonized the GI tract.

Edbar i was diagnosed and treated once for SIBO but the course of abx did not seem to treat the issue and I my IBD symptoms worsened when on abx.

I can feel the fermentation in my stomach and get a very bloated duedenum area after eating which can cause a lot of pressure. I also get a sour fermentation taste in the mouth. I find the Colloidal silver has worked at reducing these symptoms by its antibacterial action.

Also with the flaring and doing FT, I tend to think that even if kept in for a shorter period of time it actually helps in reducing the Flare and inflamation. Before I started the week cleanse I had no energy a lot of pain in my joints and bloody D with lots of mucous. Since starting the FT I noticed an instant reduction in mucous and the blood had almost dissapeared.

How long to do the FT's is one I am very unsure about, considering I have only just seen improvement, ie not yellow but brown poop and the size and shape have only really just changed to what would be seen as normal.
I think that at least 4 weeks and then tapering like trojen said may be the go for me.

I really can't believe how sleepy I am getting at night when the sun goes down, I have never really been so tired and ready for bed, have anyone else noticed this side effect from FT's? I am starting to think that maybe it is my body actually beginning to heal?

My energy levels have not increased yet, which is what I really want to happen as CFS symptoms are so debilitating but I have been in a very bad flare for about 7 years now, so it will take time to recover but I am very happy with the results so far.

Borody uses the abx to reduce the gut flora to leave room for the good guys to implant, however if abx resistant bacterial strains are present they may in turn multiply taking up additional room. I t is said that human microbiota are a very potent form of abx. This is why I used the colloidal silver enemas to reduce bacteria in the gut and silver is proven to kill abx resistant bacteria.


Today my BM was the best it has been, I would say completely normal, the diameter is getting larger, which I take as a reduction in inflamation, peanut butter consistency and all came out in one go. No mucous or blood except a tiny bit from a fissure on the TP.

I must say no medication, treatment or diet has given me this much relief regarding intestinal issues, the CFS may take longer to heal being systemic.

Wow, awesome thread....good info.

Killcolitis, thanks for thinking of us, we do you guys as well. In fact, are you still moving forward with Boston? You bring up a great point regarding the study protocol.....it calls for one FT weekly for 6 weeks???? Where did they come up with that one? I think they should consult with us and get a clue before starting:)

Hey Edbar, hope all is well, with the little man. I agree, Borody uses the 3 donor mix for improved compatibility odds.

Johnscott, I think your doing great and contributing valuable info in the process. Keep up the good work and progress.

Here are three fairly recent UC case studies that Borody reported on in a presentation he made in 2011 primarily about c diff and FT (or FMT). What's interesting is the number of FTs each case did and the length of time they did them for.

21 yr old patient with 10 yr history of severe UC failed therapies including steroid and anti-TNF therapy
Commenced FMT April 2010 and experienced immediate improvement in symptoms and lowered CRP approx one month after commencing enemas. Completed X 26 enema FMT’s.

 

23 yr male >5 yr of colitis unresponsive to immunosuppressants and anti-TNFα therapy. Symptoms prior to FMT included anal fissures, severe abdominal pain and blood diarrhoea 20-35 times daily.
Patient commenced FMT Dec 09 and markedly reduced stool frequency 15 to 1/day with no blood and resolution of abdominal pain @ 1 month after start of FMT. 9months of FMT...now 1/6 weeks

 

57y F with a 9 yr history of  refractory proctitis uncontrolled by 5-ASA, antibiotics, immunosupressants, acetarsol. 
69 ! sessions of self- infusions of FMT over several mths – from Dec 07: Colonoscopy   - no visible nor biopsy inflammation with improvement 10 mth after FMT. March 2011 – normal rectum and biopsy.
No relapse last + years , off medications

 

I have a copy of the presentation but it's a powerpoint so I don't think I can post it here. It is mostly about c diff but he does talk about UC and the three case studies.

Well I have not had the best week for FT's.

My donar is starting work earlier this week and I have not had a FT since the weekend.
I have been using the inulin instead but today my BM was not good at all. the colour is still chocolate brown and floats but was full of mucous today, some blood and very soft.



This definitely shows that I need to continue every day for much longer.

I am considering freezing a donation so I have a back up.

I am hoping that I don't have to go back to the drawing board and start again, hopefully I get a donation soon.

Johnscott, Yeah, I wouldn't freeze it. Fresher the better....6 hours max in fridge. I think the best protocol for how long to do daily FTs, is to continue until symptoms subside....then taper. I know some have lingering symptoms for a few days, others for a few months. Donor compatibility could be an issue to....a lot of factors at this point.

johnscott, I know it's hard but don't get too depressed. It's a very long road and you will no doubt have ups and downs. I'm sure the good bacteria you got in there is starting to do its job. I think you just need to get back to daily FT for a few weeks if that's possible with your donor's schedule.

I agree with killcolitis and trojen, best to use it fresh to get maximum potency. But you can use it within 6 hours in the fridge.

Post Edited (Edbar) : 4/17/2012 7:16:15 PM (GMT-6)

Thanks everyone, it is really hard not to get depressed and my back and hips are killing me too, all part and parcel of this horrid disease I suppose.

Edbar, I was worried that the poop may be bad if it was really constipated (like nuggets) or sloppy but from now on i will keep using it regardless, unless of course my donar has a belly upset.

Hopefully in the next few days my donar starts making a deposit before going off to work, it is hard relying on someone elses BM's to try and get well. I will persevere and hopefully have some better news by the end of the week.
There is no way I am giving up as it worked so well until I have had to stop the last few days.