And it's back! Or never left...

[susant]

I tested twice to make sure it was really positive... I'm just under 3 months outfrom my fmt in Tampa. I haven't felt "well" since and thought well it's just Ibs. I am now on dificid and going to Mayo Clinic next Friday. They got me in quickly when they heard my sob story. I don't want any advice or anyone to say oh you shouldn't treat because I am treating and I am going to mayo because nothing about this is normal. I'm 28 years old and should not be continuously relapsing 3 to 5 months out. I already love the mayo doctor as he got me in next week rather than making me wait until November 22nd which was their next available. Please just keep me in your thoughts as I try to end this battle with Cdiff once and for all.

[NanciT]

Susan

I am just so sorry to read this.....I had hoped all was well. Just know my thoughts are with you, sounds like you have a new excellent GI who will see you through this.
Wishing you the best with your appointment, keep us updated
NanciT

[amyc]

Good luck at Mayo! It's a great place. Sorry you have to travel so far from home, but I bet it will be worth it.

[beth22]

Other posters have gone to Mayo and had success. I wish you the same.

[georgina]

So sorry to hear that Susan , so unfair,hopefully Mayo will come up with a good plan to get you rid of this once and for all. I'll keep you in my prayers!

[Lisa33]

Oh Susan, I'm so sorry to hear this as well. I'm so glad that you are getting into Mayo rather quickly. You are right - enough is enough! Sending positive thoughts and a cure once and for all!

[susant]

Is it possible to beat this thing after fmt has failed twice now? I almost feel like I'm just pulling at straws now... at what point do I just give up? I'm sorry for the downer attitude I just have had enough...

[MKW]

Hi Susan, I'm new to this board, and recently experienced my second recurrence and am taking Vancomycin right now. The feelings of hopelessness and fear with this illness are extreme for me. There is just so much uncertainty, it's rough. It sounds like you have been through a lot with this, but you have access to top notch medical care and expertise in your near future. Try to be hopeful about that, and remember you are not alone battling this. - Melanie

[georgina]

Susan
I'm still dealing with Cdiff too , I have tried every treatment here in Romania even the naso-gastric FMT , all I have left is the colonoscopy FMT and if that doesn't work I have no other option . I guess I am left with low-grade infection since I haven't had no full blown symptoms but I have learned to live with the hard mornings and thent
to go onwith my life. I stopped thinking about how I'm never gonna be cured , about the fact that I'm going to stay that way for the rest of my life , etc and ever since I accepted that I am psychologically better. When i have my worst tummy days and anxiety and depression are trying to hit too i keep saying to myself that i have to be patient because a cure is around the corner and the day when Cdiff will be history will come soon and try to get busy with things that i like doing : shopping , playing with my dog etc. Don't lose faith Susan , go see what Mayo Clinic has to offer and keep fighting !

[beth22]

Yes, you can beat it after failed FMT. My first one failed. I had terrible SIBO after the second one and then I relapsed again after taking Cipro and had to start all over again. See what they tell you to do. Some people need more than one FMT. In Dr. Borody's practice, they do a colonoscopy FMT first and then 3 or 4 days of enemas. So, there are different ways of treating.

[Ashley20]

Im very sorry Susan, i will keep praying you can find relief from all this soon. Sounds like you found a good doctor and hopefully he has the answers to help you get rid of this. (((Hugs)))

[maxny1]

I was just looking at stats that said among recurrent CDI patients, first FMT had 81% sustained cure rate, and a second FMT yielded a 93% cure rate. So that sounds like reason for hope. https://youtu.be/CeV70YFZGXU?t=41m15s

[Lisa33]

Susan - I can't imagine your frustration with this. It's been a really rough road for you. But, never give up hope. You can beat this. The Mayo doctor may be exactly what you need to do it. Did you do bottom up and top down FMT last time? I am trying to search through your posts, but can't seem to find it. I am thinking that I remember that you did. If not, that may be something to look into with your doctor, as it has helped people with very stubborn cases.

Try to stay positive, and believe that this will someday be gone.
Lisa

[Bobbie]

Good idea. Think you are out of patience. They are supposed to be one if the experts. One of our posters went there recently with good results

-Ask the doc about adding fiber to your diet - to feed new good bacteria.

Best of luck.

Keep us posted.

[susant]

I am in Rochester now. I will see the doctor in the morning for a game plan! Hoping for the best.