Fecal Matter Transplant in 12 hours!

Hey sci...wishing fantastic outcomes on this for you.

I am so excited for you!!! I have heard such amazing things about FMT, especially with C-Diff. 95%+ cure rates, and my guess is that it would be 100% with the right poop bacteria for each patient. I am also super curious about how it works for Crohn's as the research on that aspect is less clear. PLEASE keep us all posted and I hope that this is a an easy procedure for you.

So glad your big day is finally here! Good luck and keep us updated on your progress!

Just want to add my support. Really hope this works well for you.

Thanks everyone! :) It went pretty smoothly. It took longer than a regular colonoscopy (obviously). I tend to wake up during them, so they did full anesthesia. I was out before they even moved me to the other room and didn't wake up until I was in recovery. Apparently as I was coming out of it I kept stressing about my baby and wanted to make sure she wasn't too cold, lol (she and my mom hadn't been brought back yet so she wasn't even there).

I did find out from insurance, who still hadn't finished processing the pre-authorization, that it can cost up to $2,800 JUST for the transplant part. That's frustrating because when I spoke to the GI billing office, she said she didn't know since it's so new but she imagined it wouldn't cost more than a couple hundred dollars since they're already doing the colonoscopy. We couldn't reschedule because you have to do it within 30 days of your donor doing bloodwork, but some of the labs take 3 weeks to come back. We didn't even get results of two of them until the day before! But I knew my mom didn't have HIV, lol, so I wasn't too worried.

The GI doctor said that it all went well and to expect some C for the next few days. Lovely. But what bummed me out is I thought I was in remission since I went off the pred a week ago and have had no diarrhea at all, but he saw inflammation all throughout. So he wants me to meet with my regular GI in two weeks to see where we go from here. Not cool at all. I have NO desire to do Humira; I had really hoped that the higher dose and frequency of the Remicade would work. Could the inflammation be due to the c. diff. cultures and having been on vanco for months? Maybe? Pretty please? I just feel like I've been hit by a truck for a few days after each infusion, so I don't want to feel that way each week or so with Humira injections.

I'll keep everyone updated....I guess we won't know if it works until c. diff. doesn't come back for a few years. :)

Hey Scifi,
You have been very brave and I really hope the fecal transplant works. I'm so sorry to hear that you still have so much inflammation when you thought you were in remission. Crohn's disease is so sneaky and evil! You might want to do a search and read others' posts about Humira. It is possible that the Remicade just isn't working well enough and part of why you get so fatigued is because of that. Maybe you wouldn't really feel like you've been hit by a truck after each injection.
When I went to U of Chicago, Dr. Rubin, who is considered to be one of the leading experts in Crohn's, told me that when people don't respond well to Prednisone, they also tend not to respond well to biologics either, as far as bringing down inflammation. I don't know if that applies in your situation, because you did seem to feel better on the Pred. For me, he is talking about following up my surgery with three months of Flagyl and then monitoring closely with colonoscopy and fecal calprotectin tests to see if there is any return of the disease. It almost seems like there is a subset of us who do better with biologics and another who respond to antibiotics instead. I've always suspected that the mechanism for Crohn's may be different for different people, possibly really being different sources of causation of disease. That's why some people get amazing results with SCD or biologics and others do not. Clearly I am not a doctor. I'm just sharing what I learned. I just don't think that you should stay with the Remicade if it's not doing what it is supposed to do. I'm so sorry for all of your challenges. I just so wish we could fix this for all of us. My surgery is scheduled for 5:00PM tonight. I'll check in with you when I get to the other side

When I went to U of Chicago, Dr. Rubin, who is considered to be one of the leading experts in Crohn's, told me that when people don't respond well to Prednisone, they also tend not to respond well to biologics either, as far as bringing down inflammation.

I honestly am not surprised some people choose to seek out their own paths when the so-called experts don't appear to know anything. Nobody - and this will include Dr Rubin - can tell me anything about my disease, why it took the turn it did, why it didn't respond to biologics or antibiotics, etc. Because of their lack of knowledge, I'm left with a permanent ostomy as a result and I can't accept that. I refuse to acknowledge 'experts' who actually are as ignorant as anyone on this board. (Surgeons are a different story, because I couldn't learn how to perform surgery in a week.)

Anyway, good luck with surgery today, gumby. Good luck with the faecal transplant, scifigal.

I hope both of you have better outcomes than I did. Just avoid having a stoma, because it's horrible. It really is a horrible thing to be saddled with for life.

Post Edited (NiceCupOfTea) : 5/20/2014 7:07:39 AM (GMT-6)

Sorry for the misery, guys :-/

@scifigal - Sorry, I meant to say something about the inflammation. It sucks that you still have inflammation, but sadly I was not very surprised. It's quite common to have inflammation with few or subtle symptoms. And Pred is literally the ultimate symptom-suppressor, so while I was hoping you were genuinely in remission, I wasn't entirely convinced that you were.

In a nutshell, Pred is just there to get an acute flare-up under control, but the chances of it achieving a prolonged remission by itself - especially if you have been on it before - are seriously low. This is the sort of stuff that doctors don't tell their patients, who then have to find out the hard way or from other patients. Meanwhile, the next logical step is to get tested for Remicade antibodies. Beave sums it up well here: www.healingwell.com/community/default.aspx?f=17&m=3083538

@operatic - I'm just utterly worn out by it all. I think the most you can say about Crohn's is that it doesn't kill you anymore, but some days it feels like it might as well, tbh. I dunno; I suppose I'm just jaundiced, both from my own experiences and other people's experiences that I read about. I do think message boards tend to attract hard-luck cases, so I just have to hope that IBD treatment isn't as dire as it seems from HW's Crohn's and UC boards.

Well anyway, welcome to HW! >.> I hope your surgical-induced remission lasts for many more years.

Hey. Glad it went ok. I think pmedic has a point regarding the possibility that you are more prone to cdiff because of all the inflammation in your colon from the crohns which means you don't have much of a gut mucosal barrier.

I often wondered about what came first when my hubby has his first really bad flare up and was hospitalized - the crohns flare or cdiff. He wasn't on any antibiotics to cause cdiff at the time, so it is my belief that a crohns flare up caused the cdiff to take hold.

So, I think in order to keep cdiff at bay, you must get crohns into remission. So, if remicade isn't doing it, it is time to try something else. Maybe vedolizumab will be good for you? Maybe you can discuss that possibility with your doctor.

In the meantime, I hope the FT has good results and holds further cdiff recurrences at bay. I suggest adding florastor to your daily regimen to hedge your bets to keep cdiff at bay. I'm sorry about the billing stuff - but even at $2800, if it keeps cdiff away, it is totally worth it. When my husband was in serious condition in the hospital, I was ready to get my husband airlifted to a hospital that could do the FT procedure until he started responding to the remicade and getting his health back slowly. So, I understand how much it sucks to have both going on.

Good luck! I'll keep my fingers crossed for you!

PV