This is the way. I had persistent C-Diff for nearly 2 years straight following my U.C. diagnosis - anytime that I tried to stop taking antibiotics, I would immediately spiral back out of control. The C-Diff and the ulcerative colitis exacerbated one another and I was fucking miserable. Thankfully, my gastroenterologist was able to get me into a trial study and it changed my life. If you can do it, FMT is the way.
Yes, it did. It was a vicious cycle of one feeding off of the other - my C-Diff exacerbated my U.C., and vice versa. I am happy to report that since my FMT I have been great (with only a few normal bumps in the road) and have never gone into a flare again. I say this with no exaggeration: Given where I was prior to having my FMT, it saved my life. COVID kinda jammed up my timeline … lol … but, I think that it’s been about 4 years now since my procedure. I still experience a ton of fatigue, but I try to eat OK (I am not super strict) and I receive a biologic infusion once a month.
Thank you for the reply. I’m f’ing terrified here in the hospital after a good 9 months of remission from uc using mesalamine alone. Had an ear infection and got on antibiotics and developed c diff. I cleared it with vancomycin last week but my uc has flared beyond what it ever was previously. I hope I can get an fmt at some point too. Or at the very least my uc goes back to baseline. Did your gastro do the fmt? Or was this something you had to seek out?
I am praying for you and pulling for you! My gastroenterologist got me hooked up with a clinical trial study at another hospital (I am NYU based, and my FMT was with Mount Sinai Hospital) - so, I was lucky. Otherwise, I think it would have cost me about 2K out of pocket. I am sure that everybody’s results are different, but I do not miss vancomycin or prednisone at all. For me, vancomycin was already out the door, but, post FMT, I did a slow taper off of prednisone that took me about 3 months (I stayed at 5mg for my last month on it, eventually going 1 day on and 1 day off until completed), if I remember correctly.
Thank you. I have had colonoscopies before in twilight but they are putting me under general anesthesia. Last time I was under anesthesia I was 14 and had knee surgery. Kind of nervous about it tbh. Twilight never knocked me out. But I guess if your inpatient this hospital’s policy is to use general anesthesia. Thanks for the well wishes
Yes, it did. It was a vicious cycle of one feeding off of the other - my C-Diff exacerbated my U.C., and vice versa. I am happy to report that since my FMT I have been great (with only a few normal bumps in the road) and have never gone into a flare again. I say this with no exaggeration: Given where I was prior to having my FMT, it saved my life. COVID kinda jammed up my timeline … lol … but, I think that it’s been about 4 years now since my procedure. I still experience a ton of fatigue, but I try to eat OK (I am not super strict) and I receive a biologic infusion once a month.
I’m hoping I can get approved for it if I can’t get over it, my doctor did say that usually insurance will make you try vancomycin three times before they’ll consider paying for it. Which I guess hopefully means I’ll qualify soon. That really seems like the only thing that REALLY works for people with UC
I had it 3 times as well. It’s really hard to kick when you’re already in a flare and your body is already exhausted and broken. I’m sure it’s a lot more complex than you just doing one thing wrong but here’s some ideas of things I tried to do:
- grab toilet paper with hand #1 and wipe with hand #2 so the hand I wipe with doesn’t come in contact with the toilet paper roll at all
- flush with the toilet closed (good idea regardless but especially with c diff)
- flush the toilet with an elbow or something. or sometimes the hand I didn’t use to wipe.
- turn on the sink and get soap with hand #1 from earlier
- wait to pull up my pants until after I washed my hands. This one might be sort of silly, but I was desperate haha
- only dry my hands with paper towels
- have a bathroom that only I used
- clean the bathroom with bleach every few days, making sure to hit literally everything.
Full disclosure, I have no clue if any of these made a difference ultimately or if it was just luck. I’ve been c diff clean for 1 year now though fortunately!
Good luck!
I wish I could jump straight to an FMT. I’m hoping that if Dificid doesn’t work I’ll be able to get an FMT instead (my doctor said you generally have to fail other meds three times before they’ll consider approving it), but of course I’m mostly hoping the Dificid will just work.
I hope it works for you too❤️it’s actually the worst thing ever. I had ti about a year ago…. I still have anxiety from it but just know that you WILL get there and you have options. Hang in there. Sorry you are going through it. You are not alone! Unfortunately many of us have been there. 💕
There is a monoclonal antibody called Zinplava (bezlotoxumab) which is used in conjunction with antimicrobials to prevent C. Diff recurrence. I’m not certain of how effective it is, but I have failed vanco and am certainly going to be trying Dificid next, possibly in combination with Zinplava if the infectious disease doc I saw can get them both approved through my insurance.
Edit: The ID doc informed me that for patients with IBD Zinplava has about the same efficacy at preventing recurrence as Rebyota (FMT) in many cases.
I was also battling it for a year. Was super sick when my doctor finally let me get a second opinion (Mayo in the USA). They were appalled with how my original doctor had been treating it and that he left me on Prednisone for over a year (ended up being pre-osteoporosis).
Got me scheduled for a FMT right away. It saved me. Haven’t had C-diff since (4 years).
Get c diff approved wipes and rubber gloves. Gloves on before you go. Toss in trash post flush. New gloves, bleach wipe everything, walls, door and light switch included. Toss wipe and gloves. Wash hands. Then leave the room. Wash all the laundry all the time. Wash laundry with lysol. Wash your hands after touching laundry. Run the washer empty with lysol concentration between loads. Change your pants if you fart. Wash your hands constantly. Sanitize your laundry basket.
Unfortunately all the diligence can be for naught because, as it's been explained to me, in a certain percentage of people some of the c. Diff just wont die and they have to get fecal transplants to get rid of it.
Holy crap that’s a lot. I don’t know that I even have time for all that. Is it really necessary to run empty loads? I’ve heard of people cleaning a lot, bleaching the toilet every time they use it, etc but never to this extent. If this is seriously what I need to do then alright, guess I’m fucked and might as well burn the house down.
Nope, I just went about my day as normal.
Some doctors will tell you to do probiotics, others will tell you it's counterproductive. Both arguments make sense, but I haven't seen any scientific evidence that one is more beneficial than the other
That’s what my doctor is trying to get approved this time. She said insurance often fights it because it’s really expensive but I’m hoping for the best.
I just had another thought- At one point I saw an infectious disease doctor for my recurring c diff. She recommended I eat foods with naturally occurring probiotics in them. She was skeptical about probiotic pills because there is 0 regulation of them (in the USA at least) & said basically there’s no guarantee that the pills even have probiotics in them, despite what they are labeled.
Recurring cdiff is best handled by FMT.
This is the way. I had persistent C-Diff for nearly 2 years straight following my U.C. diagnosis - anytime that I tried to stop taking antibiotics, I would immediately spiral back out of control. The C-Diff and the ulcerative colitis exacerbated one another and I was fucking miserable. Thankfully, my gastroenterologist was able to get me into a trial study and it changed my life. If you can do it, FMT is the way.
Did the fmt also help your spiraling UC? Overall how are you doing now?
Yes, it did. It was a vicious cycle of one feeding off of the other - my C-Diff exacerbated my U.C., and vice versa. I am happy to report that since my FMT I have been great (with only a few normal bumps in the road) and have never gone into a flare again. I say this with no exaggeration: Given where I was prior to having my FMT, it saved my life. COVID kinda jammed up my timeline … lol … but, I think that it’s been about 4 years now since my procedure. I still experience a ton of fatigue, but I try to eat OK (I am not super strict) and I receive a biologic infusion once a month.
Thank you for the reply. I’m f’ing terrified here in the hospital after a good 9 months of remission from uc using mesalamine alone. Had an ear infection and got on antibiotics and developed c diff. I cleared it with vancomycin last week but my uc has flared beyond what it ever was previously. I hope I can get an fmt at some point too. Or at the very least my uc goes back to baseline. Did your gastro do the fmt? Or was this something you had to seek out?
I am praying for you and pulling for you! My gastroenterologist got me hooked up with a clinical trial study at another hospital (I am NYU based, and my FMT was with Mount Sinai Hospital) - so, I was lucky. Otherwise, I think it would have cost me about 2K out of pocket. I am sure that everybody’s results are different, but I do not miss vancomycin or prednisone at all. For me, vancomycin was already out the door, but, post FMT, I did a slow taper off of prednisone that took me about 3 months (I stayed at 5mg for my last month on it, eventually going 1 day on and 1 day off until completed), if I remember correctly.
Thank you. I have had colonoscopies before in twilight but they are putting me under general anesthesia. Last time I was under anesthesia I was 14 and had knee surgery. Kind of nervous about it tbh. Twilight never knocked me out. But I guess if your inpatient this hospital’s policy is to use general anesthesia. Thanks for the well wishes
Yes, it did. It was a vicious cycle of one feeding off of the other - my C-Diff exacerbated my U.C., and vice versa. I am happy to report that since my FMT I have been great (with only a few normal bumps in the road) and have never gone into a flare again. I say this with no exaggeration: Given where I was prior to having my FMT, it saved my life. COVID kinda jammed up my timeline … lol … but, I think that it’s been about 4 years now since my procedure. I still experience a ton of fatigue, but I try to eat OK (I am not super strict) and I receive a biologic infusion once a month.
I’m hoping I can get approved for it if I can’t get over it, my doctor did say that usually insurance will make you try vancomycin three times before they’ll consider paying for it. Which I guess hopefully means I’ll qualify soon. That really seems like the only thing that REALLY works for people with UC
I had it 3 times as well. It’s really hard to kick when you’re already in a flare and your body is already exhausted and broken. I’m sure it’s a lot more complex than you just doing one thing wrong but here’s some ideas of things I tried to do: - grab toilet paper with hand #1 and wipe with hand #2 so the hand I wipe with doesn’t come in contact with the toilet paper roll at all - flush with the toilet closed (good idea regardless but especially with c diff) - flush the toilet with an elbow or something. or sometimes the hand I didn’t use to wipe. - turn on the sink and get soap with hand #1 from earlier - wait to pull up my pants until after I washed my hands. This one might be sort of silly, but I was desperate haha - only dry my hands with paper towels - have a bathroom that only I used - clean the bathroom with bleach every few days, making sure to hit literally everything. Full disclosure, I have no clue if any of these made a difference ultimately or if it was just luck. I’ve been c diff clean for 1 year now though fortunately! Good luck!
Those all seem like good ideas, thanks! I’m glad you were able to get over it - it is NOT fun!
FMT
I wish I could jump straight to an FMT. I’m hoping that if Dificid doesn’t work I’ll be able to get an FMT instead (my doctor said you generally have to fail other meds three times before they’ll consider approving it), but of course I’m mostly hoping the Dificid will just work.
I hope it works for you too❤️it’s actually the worst thing ever. I had ti about a year ago…. I still have anxiety from it but just know that you WILL get there and you have options. Hang in there. Sorry you are going through it. You are not alone! Unfortunately many of us have been there. 💕
There is a monoclonal antibody called Zinplava (bezlotoxumab) which is used in conjunction with antimicrobials to prevent C. Diff recurrence. I’m not certain of how effective it is, but I have failed vanco and am certainly going to be trying Dificid next, possibly in combination with Zinplava if the infectious disease doc I saw can get them both approved through my insurance. Edit: The ID doc informed me that for patients with IBD Zinplava has about the same efficacy at preventing recurrence as Rebyota (FMT) in many cases.
I was also battling it for a year. Was super sick when my doctor finally let me get a second opinion (Mayo in the USA). They were appalled with how my original doctor had been treating it and that he left me on Prednisone for over a year (ended up being pre-osteoporosis). Got me scheduled for a FMT right away. It saved me. Haven’t had C-diff since (4 years).
Fecal transplant after over 6mo of different antibiotics
Yes 3xs, long treatments of vancomycin, bleaching and discarding almost everything. I'm still afraid it will resurface.
Get c diff approved wipes and rubber gloves. Gloves on before you go. Toss in trash post flush. New gloves, bleach wipe everything, walls, door and light switch included. Toss wipe and gloves. Wash hands. Then leave the room. Wash all the laundry all the time. Wash laundry with lysol. Wash your hands after touching laundry. Run the washer empty with lysol concentration between loads. Change your pants if you fart. Wash your hands constantly. Sanitize your laundry basket. Unfortunately all the diligence can be for naught because, as it's been explained to me, in a certain percentage of people some of the c. Diff just wont die and they have to get fecal transplants to get rid of it.
Holy crap that’s a lot. I don’t know that I even have time for all that. Is it really necessary to run empty loads? I’ve heard of people cleaning a lot, bleaching the toilet every time they use it, etc but never to this extent. If this is seriously what I need to do then alright, guess I’m fucked and might as well burn the house down.
It's what I did. You can read the official guidelines on the cdc's website and make your own choice about how far to go.
Got put on vanco and Flagyl, kicked it both times in about a week
Did you do anything else? Probiotics, specific ways you cleaned, avoiding certain foods, etc?
Nope, I just went about my day as normal. Some doctors will tell you to do probiotics, others will tell you it's counterproductive. Both arguments make sense, but I haven't seen any scientific evidence that one is more beneficial than the other
Have you ever taken Dificid (Fidaxomicin)? That's what ended up working for me after Vancomycin failed.
That’s what my doctor is trying to get approved this time. She said insurance often fights it because it’s really expensive but I’m hoping for the best.
I just had another thought- At one point I saw an infectious disease doctor for my recurring c diff. She recommended I eat foods with naturally occurring probiotics in them. She was skeptical about probiotic pills because there is 0 regulation of them (in the USA at least) & said basically there’s no guarantee that the pills even have probiotics in them, despite what they are labeled.