Had a follow-up colonoscopy 7/19, a month after a 10-day Fecal Microbacteriotherapy Transplant (FMT) procedure.
A little background...diagnosed 10/2008 with ulcerative colitis and have fought multiple flares through to remission each year since. I am on 800mg Asacal, 3 pills, 2xday. Predisone for flares as needed but losing efficacy. Hospitalized in April for IV steroids as the oral predisone was not reducing inflammation (even at 60mg).
Always wanted to try FMT so here was my chance. My gastro had zero experience with it so I saw Dr. Swaroop at UT Southwestern in Dallas. Gastro said, "try the FMT but if it doesn't produce positive results I want you on Remicade ASAP."
The UT Southwestern folks gave me their 10-day FMT protocol and I used my older brother as a donor. I made several process improvements over my 10-day experience and by Day 3/4 I was holding an entire 250ml sample 24 hours until I evacuated the next morning prior to the next day's application.
Going into the 10-day procedure I was having lingering flare symptoms even while taking oral prednisone still (remember, a few weeks prior I was hospitalized for IV steroids, which reduced my symptoms). These included blood with every BM, 4-6 BMs per day, cramping, etc. They didnt want me on prednisone during the FMT but I threw this all together quick and was still tapering off oral prednisone even into the FMT procedure week.
By the Friday of the week of my FMT I was off oral prednisone. Wrapped up the 10-day procedure that next Monday and headed home to Dallas, but I still had blood with every BM...frequency seemed to be reduced but it was hard to tell becuase I had been taking immodium that week to help me hold the FMT samples. However, 2-3 weeks after the FMT trial I had zero blood and frequency was completely normal...1-2 BM/day. I was still taking Asacal.
On to the results of the colonoscopy...up to 50cm into my colon the colon wall looked "completely healthy" (aside from previous scarring) according to my doctor. The mucous membrane was intact with no signs of inflammation. But passed 50cm the colon wall exhibited "cobblestoning", was generally ulcerated and inflammed (although currently I have no blood or typical flare symptoms, which is weird).
My doctor and I discussed this and an early theory we both had was the FMT enemas were only going so far up into my colon. The lower areas that logically would have more contact with the FMT sample appeared healthy. My gastro is going to speak with the specialists at UT Southwestern this week and get back to me. From here, I don't know what they will want to do. My gastro was very excited about
the results.
Anyway, I'm not a doctor or expert by any means. I just wanted to share what I thought was potentially promising results. It's completely possible I was just coming down off the flare anyway and the timing of the FMT procedure and my symptoms normalizing is just a cooincidence. But this is the best I've felt in a long time and I hope some of you can get there...if it takes an FMT trial than so be it. I wish I had not waited this long.
I will come back and update you all once I hear back from my doctor and the folks at UT Southwestern.
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I'll just throw out what I changed with the protocol from UT Southwestern:
-Ditch the enema bag. Messy, cumbersome, time consuming transfer, etc. I bought a bunch of fleet enemas and emptied them out, then funneled the daily sample into the bottles for application. Took 15 minutes from start to finish with far less waste.
-I took an Immodium before each application and once I started using the enema bottles, I was able to hold the samples for 24 hours all but one day from Day 3-10 (once I ditched the enema bags).
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UPDATE Just got a call from my gastro. Labs came back on the colonoscopy and just as she thought, the rectum and sigmoid (lower 50cm) showed no active inflammation (no colitis). It has been about
5 years since I could say that. Even when I felt OK "between flares", I typically had inflammatory markers in the tissue of my lower colon when scoped.
Likewise, beyond 50cm the results were as we thought...chronic, active colitis. The gastro and Dr. Swaroop at UTSW recommend I do the protocol again, but this time they want me to use at least a 400ml sample and try to take it at night so that I can hold it for an extended period of time while laying down, preferably with my feet above my head. I got a little cavalier with the protocol in dropping down to the 250ml Fleet bottles and that appears to be the big mistake. So they think this will help spread the sample past the first flexure and on to the deeper portions of the colon. Really high-tech stuff here. So there it is. I will try to follow up once I complete round 2 (no hard dates set).
Hopefully this is the FMT actually working and not some coincidence...and hopefully some of you can achieve similar results with it.
P.S. As soon as I can get the website set up I will be selling my brother's turds for fecal transplant online at
www.***.com. [img]/community/emoticons/blush.gif[/img]
Removed your link. It is against the TOS to advertise a website with the intent of selling products.Post Edited By Moderator (notsosicklygirl) : 12/29/2013 4:23:34 PM (GMT-7)