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***Fecal Transplant Update - One Year Later***

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Ulcerative Colitis
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Posted 4/9/2014 6:52 PM (GMT 0)
A few weeks from now will mark the 1-year point from my first stab at a 10-day Fecal Microbacteriotherapy Transplant (FMT) procedure (self-applied using my brother's samples). Technically mid-May will mark 12 months but I get busy and forget to post on here so I figured I'd do it now while its on my mind.

Here's a link to my original post:

https://www.healingwell.com/community/default.aspx?f=38&m=2799459

As far as my current situation goes I have the following to report.

-My gastro wanted me to do another FMT procedure with higher volume samples to reach the deeper parts of my colon but I never got around to that.

-I have been off all meds since June 2013, including steriods.

-I never got around to starting up a special diet after my FMT and quite frankly have been eating like crap for 11 months.

-My stress levels in life/work (excluding the latest happening with my UC) are higher than ever - honestly, this has been the longest year of my life both professionally and personally.

HOWEVER, I have been symptom free since the procedure. This is the longest I've gone without symptoms after I originally was diagnosed in 2008 BY FAR, not to mention this remission is not drug induced. I go 1-2 times a day very regularly. No blood or cramping. No urgency. From a functionality standpoint I appear to have a normal (i.e. disgusting) male digestive pattern.

Who knows what the cause of this terrible syndrome is or if there is one magic bullet cure or many treatment possibilities, etc. I know FMT hasn't worked for everybody and who is to say I won't flare up again someday? But as a fellow sufferer I would encourage any of you who are at the end of your rope to at least try the FMT once to see if it makes a difference.

I plan to have a follow up colonoscopy here in a couple months. I felt better last year soon after the procedure but my doctor said there was still inflammation past 30cm on my follow up colonoscopy. So i will let you guys know what the follow up results are.

Good luck!

Posted 4/9/2014 7:36 PM (GMT 0)
Glad to hear it worked for you. I always consider this an option and will definitely think about doing it if I have any kind of significant, long lasting flare ever again.
Posted 4/9/2014 7:43 PM (GMT 0)
Some people aren't going to believe I'm saying this but try to eat as health as you can. You don't have to make a cult out of it. If you want to eat McDonalds one day then do it. I also think you should do whatever you can to keep the stress levels as low as possible. It's great that you are where you are but if you should have a relapse there's no guarantee that another FT will help.
Posted 4/9/2014 8:06 PM (GMT 0)
Pretty amazing and thanks for sharing. Always inspired by these kind of stories. Looks like the microbial balance has been restored. FecalTransplantWithUc posted a similar story recently, but he was in a pretty dire situation and three days away from surgery.

A few questions for ya:

1) What kind of diet did your donor (brother) eat?
2) Are you doing anymore FMTs for maintenance or was this just a one time deal?

Thanks in advance.
Posted 4/10/2014 10:01 AM (GMT 0)
StealthGuardian,

My donor ate a high fiber diet for 2 weeks prior to the 10-day procedure. It may have been a little more specified than that but I don't recall the specifics. We were given a protocol to follow from UT Southwestern.

And no, I have not done any additional procedures. Like I said, I plan on following up with my gastro in the near future and checking in with the folks at UT Southwestern and I'll see what they say.

To be honest, I'm not super stoked to go back in for colonoscopy work because I don't want to risk throwing off the balance of the microbiome I have working now. But I know it's a necessity. Either way I'll update the board.
Posted 4/10/2014 12:26 PM (GMT 0)
1) There was an interesting post started by LondonLurker recently about other less invasive ways of determining inflammation and severity of disease. Fecal calprotectin seems to be a emerging as a gold marker for IBD inflammation. Interesting paper here that gives the benefits and downsides of the marker - scroll down to the conclusion for a quick summary. For residual inflammation, crp and maybe even a sig scope might do the trick.

I don't like the idea of a full scope either, as a few here have flared after solid remissions. Kind of like big bad wolf trying to blow the house down. Let's hope your microbiome is as strong as bricks now. ;)

2) It is interesting your brother ate a high fiber diet. IMO, the diet, environment and stress level of the donor seems to make or break the success rate of FMTs. If the American Gut Project tells us anything about the thousands of samples people are sending in, it's that fiber less diets are associated with less microbial diversity and more pathogenic bacteria. Kudos to your bother for eating well before the FMT.
Posted 5/2/2014 6:55 PM (GMT 0)
Good to hear you are still doing well. I hope you remain cured for ever. Very inspiring for the rest of us who are thinking about or doing the Fecal Transplantations.
Posted 5/13/2014 10:52 PM (GMT 0)
Congratulations UC_Hater! I can also say I have also been healthy without necessarily having a healthy diet, although my donor also made an effort to eat a higher fiber diet along with fermented foods. In the nearly 34 months since my grand remission, I eat McDonald's Hamburgers at least a few times a week. I often use one near my house as my home office. With having a healthy and more diverse diet is a good thing, it doesn't seem to be absolutely necessary to beat Ulcerative Colitis (and have it stay beaten) once you make it past the tipping point.
Posted 5/14/2014 12:14 AM (GMT 0)
McDonalds seems to be the gold standard for testing if FMT cures one's UC or not.

Very fascinating. I'd pig out as well for old times sake and then get back on track. :)

Wouldn't mind throwing a vanilla coke or two in there... :D

*drools*
Posted 5/14/2014 6:56 AM (GMT 0)
ahhh Mcdonalds *drools*
Why do you guys talk about food :( lots of us here are on pred/steroids and already craving food...
Posted 5/14/2014 12:19 PM (GMT 0)
How bad was your colitis before you did the fecal transplant? Average time between flareups?
Posted 5/14/2014 2:21 PM (GMT 0)
McDonalds mmmmmm, strange thing about me, the best time for me to eat at McD's is when i'm flaring. I think since it is such crap over processed food my intestine can more easily suck some calories out of it as it shoots through at light speed, where normal healthy food I don't get hardly any calories from - I always assumed it was because non-processed food takes more time and energy to breakdown. I never eat the fries but a Big Mac and a side burger makes for a decent meal, the same goes for Toxic Belch (Taco Bell) soft tacos. I'm not saying I get great formed BM's from eating it, but it doesn't seem to pass through any worse or faster when I'm flaring and I think I get a little more calories from eating it over a more "healthy option". But when I'm not flaring I wouldn't ever really consider eating there, I mean seriously a $4 crap burger, I would rather eat something tasty when i'm allowed.
Posted 5/14/2014 5:55 PM (GMT 0)
Dead pleased for you UC_Hater
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