Fecal Transplant - I took the plunge! PART V

I was in a focus group about fecal transplants 2 years ago:

http://news.uchicago.edu/article/2011/06/09/patients-bowel-disease-eager-test-fecal-therapy

As far as I know, the University of Chicago hasn't started any clinical trials with this yet, but it seems like they intend on doing some.

Edbar, sounds like your son had cdiff with his uc.  This is exactly what my son was dealing with.  Cdiff becomes resistant to vanco, thus, the recurrences.  No surprise your son is doing much better since doing the FTs.  The only home FT protocol for UC that I know of is:  daily for a week, then weekly for 6 months, then monthly for 6 months.  This gives the body a full year to adjust and allow colonization.  It also gives you time to modify meds if needed.

I want to point out, this may not be a cure for UC, but no doubt a viable option for remission control (adjunctive).  My son was never in remission with remicade alone....since adding home FTs, he is.  After a year or so, we hope to back him off remicade and onto something non-immune suppressing.  That said, he has had 4 strep throat infections since starting the remicade.  

Good luck to all, congrats with your son's success Edbar.       

cdiff is notorious for providing false negative test results. I find it interesting that he responded to vanco (cdiff abx) only to get it again. Sounds like recurring cdiff to me. Anyway, the FT is almost a guarantee to kick the cdiff if he had it...it can also help with the UC...so I'm not surprised your son is doing better.

Thanks for the tip on the wild oregano oil. I also read about grapefruit seed extract being used the same way. Have you heard of this? We will definitely be looking into this OR a tonsilitis.

Good luck to you and your son, feel free to contact me direct with any questions or comments on FT. My email is on my profile.

Please let us know how it goes... FT is on my mental list of things to try (if I can find a donor) if/when I next flare so I follow these posts with great interest.

I am also happy to answer any questions about my success with FT. My email is in my profile.

Stacy

Started Fecal Transplant on Jan. 19, 2012. It was something I'd previously refused to even look into, but once I did I was hooked! I went from not even wanting to consider it, to actually doing my first FT within about 3 days HAHA, not very patient with this disease and obviously willing to try ANYTHING! It is absolutely fascinating (and disgusting). I have been through a whirlwind with this disease starting in Nov. 10' up until now without ever achieving true remission. TSO helped me greatly. Went from 20-40 bloody bm's per day to 1-5 depending on what I eat and how steady I am with my supplements. TSO is wonderful, however, it was so expensive I exhausted my entire savings within 1 year. I decided to test whether or not it was even working and stopped taking it, bad idea. Not long after I was back in the hospital with 20 bloody's a day. I re-ordered TSO and took my first dose one week ago. It takes awhile to work and definitely does not give me true remission. It does keep me out of the hospital and off most meds so for that I am thankful. Anyway, back to the FT- Any suggestions? Tips, tricks? I've done 3 so far and have not seen any improvement whatsoever. I am not expecting a miracle cure but it sounds like that is what happens for some. All of the science behind it makes so much sense I just don't see how it could not work. The thought of being med free, symptom free, pain free is almost too much to imagine. Anyway, any advice or personal success stories would be VERY much appreciated. I believe i've read everything there is to read about it on this website so new info would be great!

I just read on the Facebook group "Fecal Bacteriotherapy is the Bomb" that a GI doc from the practice, Jackson Siegelbaum Gastroenterology, in Harrisburg, PA conducted a fecal transplant via colonoscopy for a UC patient. Good news...

Hi,

Edbar- Like I said above, no results yet. I've done 3 so far and have not seen a difference at all. I could say I'm tired, bloated, gassy, and crampy… but that's kinda the situation anyway haha so it's hard to really say. I'll get back to you on the exact amount :) My mom does all of the dirty work. It's a little rough of a process and we kind of jumped into this blindly. You know how desperate UC can be! The sample is put in a bag, mushed around, mixed with distilled saline water, cut the corner and insert into an enema bottle. I have a ton of perfect little enema bottles from when I'd do butyrate enemas. I then put it in and run to my bed, lie down. I've always heard that you should lie on your left side because that's the best way for things to travel up but honestly its impossible to tell. It's a process in itself just trying to not gag, keep it in, and pray pray pray! I'm usually okay at holding them in. Ive gone anywhere from 2-8 hours. I think the goal is 2+ hours to allow time for colonization! Unfortunately, I have pancolitis so I get worried about how well this will work without getting the "colonoscopy spray" (gross). I like the way you have your son move from side to side. That is kinda the approach I take, just move around and hope that it travels up! Eight years old… wow :( Poor little guy I really hope this is his answer too!

How long have you been doing the FT's with him? Did you guys test the stools, do the antibiotics, ect? We did not. I've spent so much time and money already on this disease and I know my mama is safe so we just dove into it! Let me know his progress, I am VERY curious about how others do with this. It is just so interesting and exciting I can't stand waiting for results!!!

Thanks Meredith! If this rough process doesn't work were going to definitely try a more professional approach by involving a willing GI or ND. It just makes too much sense not to try it every way possible until it works :) For now though, wouldn't it be amazing to basically spend zero dollars and get 100% cured?! I spoke to a girl who believed the colon spray really didn't make a difference and was more of an irritation and hassle than anything else. It worked for her and it doesn't sound like she attributes it solely to the colon spray, but rather to the at home treatments done after. Plus, by the time they actually did the procedure the stool was old.. hmmm.

Anyway, any advice, stories, or questions are very welcome. I'm completely obsessed over this and I truly believe this could be the answer for A LOT of people!!! I mean, if it could work for a medical failure like me (docs words, not mine) then it really could work for anyone.

We've been doing the FTs for 7 weeks now. When my son was in hospital last Nov he was given prednisone and vancomycin. This seemed to help. So yes he did do the antibiotics before but that was to treat his flare. We started the FTs after the abx.

are you in Ontario?

Killcolitis & Edbar,

Pleas stay in touch with me via email as well. We are all in the same boat with young UC kids. Each of them doing FT and either on or contemplating Remi. We may also have to talk about surgery at some time...hopefully not. We have to stick together with this.

Some people see immediate results, however, those seem to be the ones who had the first FT via scope. That said, and regardless, an ongoing home enema protocol is usually in order. The UC "famous 6" that Borody put into long term remission/cured with FT, had symptoms up to 4 months during their protocol.

A one and done FT migh work for cdiff, but UC seems to be a much tougher nut to crack. The more people I talk to about this and the more literature I read, the following protocol is the one I'd suggest: Daily for a week, every other day for a week, weekly for several months, bi-weekly for several months, monthly for several months, etc. There are others who think a longer initial daily routine may be in order when not getting the first FT via scope.

Elevate the bum, allowing gravity to work for you. Watch a movie and rotate a bit to stay comfortable. Hopefully the "good flora" will be migrating during this time. My son stays down for an hour before he is off and running. He usually holds it for at least a couple hours.

Lastly, other meds will more than likely be needed for the first couple of months during the FT protocol. DON"T expect to drop all meds immediately...it is a process in which your colon needs to heal first.

Thought I'd post an update on my situation:

I've been in a relatively mild flare for the past 2 months. Started out as usual: some blood on TP occasionally, then I started going twice a day, then a bit more blood, then I couldn't fart without sharting (this is where I draw the line and where all hope for an intervention-free recovery is lost for me), the needing 4 layers of TP so my fingers wouldn't stink and get poop wet :P To now where it is mostly all bloody diarreah, with some pain during BMs and incredibly hard to control urge when a BM is incoming. Thankfully I am somehow STILL only going twice a day with no symptoms at all in between these two BMs, which is not at all the usual for me when flaring. In my previous flares by the 2 month mark I would be going 5-8 times a day with BMs so painful I'd literally be throwing up

At any rate, here's where FT comes in. Some mixed news. In the past FT has really helped me and got rid of my flare. This flare not so much.

Last month (a month into the flare, when symptoms were still manageable) I figured it's time for FT. So we did 2 transplants over the weekend. No help at all. So I did another two the next week... no help at all.

Then I realized, I wasn't laying down on my bed and turning so the poop can coat my entire colon and rectum like I did before! What a waste of time that was.

So the week after I did it proper and right after transplant I headed to bed and stayed there for somewhere between an hour and two hours, turning sides every 5 minutes. Next day my poop was completely solid with no blood at all. Bad sadly every day after that my symptoms gradually went backwards and by Wednesday it was obvious it was failing. By Friday I was at square 1 with the exact same symptoms as before the FT.

So yesterday I did a transplant, and today I will be doing another. I just came back from the bathroom (20 hours after yesterday's FT) and guess what.. completely solid, brown poop, and I could even fart normally. Some mucus but overall very little.

But I have little faith and what will happen is probably a repeat of last week. Not getting my hopes up this time.

Here's what's different from the last times when FT got rid of my flares completely: I started Apriso. And my symptoms began a month after starting Apriso (not that it's unusual, since diagnosis I've always gotten a flare around this time period). But I have reason to believe I am intolerant to mesalamines. So starting today I will stop taking Apriso for 3-7 days to see if there's improvement.

In reality that's not a great idea because then if I'm better by next week how will I know if it's because I stopped Apriso or if it was the FT that helped? But I don't care. I absolutely need this flare to go away right now because I just got a job and at the rate it's coming on I won't be able to work in a matter of weeks anyway