update- FMT scheduled!

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
code3rn
Regular Contributor
Posts: 158
Joined: Tue Jan 07, 2014 3:32 pm

update- FMT scheduled!

Postby code3rn » Thu Mar 20, 2014 12:17 am

Hi all-

Just wanted to give an update. Got C.diff postpartum after a bout of mastitis almost 5 months ago. Have been on vanco and a vanco taper and relapsed. I saw a GI doctor from Oakland today who was on one of the lists here. He was fantastic! So refreshing to talk to someone who really knows the disease inside and out. Just wanted to share what he had to say. Of course this is not a medical site and please listen to your own doctor and their advice.
He said peripartum patients contracting cdiff is growing, which makes sense by all the postpartum mothers I have found on this site. He recommended for me to increase my florastor to 2 pills 2 times a day. I know this has worked for some and for others done nothing. I'm not sure Florastor helps or harms me honestly. Secondly, he also changed my vanco taper. I have seen a similar taper if not the same exact one that others have used here. I am to take 4 doses of vanco every other day for 5 cycles, then 4 doses every third day for 5 cycles, then every fourth day for 5 cycles and finally every 5th day for 5 cycles. He says in his experience this has worked to eradicate cdiff about half the time. So for that reason he also had me schedule the FMT. Honestly, I wish I could just do the FMT and not try the taper. But since I have to wait for the donor's testing and all that, plus May 2nd was the closest date he had open, I will try the taper. I asked him about Dificid, and whether he recommended i should try it this time. He says in his experience Dificid hasn't proven to work as well as he would like for relapsing cases. So for that reason he prefers vanco. As a first line drug he says it works well, but it is so darn expensive that it just doesn't happen that way.

I also spoke to him about how bad my anxiety, depression, and sleep has been in the past few months. And In his New York native words he said, "Cdiff "effs you up"! I laughed out loud at his bluntness. He also said not to expect a miracle overnight with vanco or an FMT. That the gut truly takes many months to heal and what people can eat or tolerate varies from person to person. I know many others on this site have said and experienced the same. I asked him if I should change my job and not work in the emergency room, and he said in his opinion he wouldn't, and just to be judicious with hand washing and wearing gloves.

As far as donors go, he recommended my husband. My husband suffers from stomach issues so I am hesitant to use him. I think I will go will use my sister in law who is young and healthy and doesn't take any meds, or my aunt. He didn't have a preference between blood relative or not. He seemed confident in being able to "fix" me. He said I was the kind of patient he liked because I am "fixable". Funny because all the other doctors I have seen were frustrated with me bc I am a harder case in their eyes! I tend to go to the negative and wonder if I will be the 10% that will not be cured by FMT's. Silly I know and I need to stay positive.

He also said that FMT's as we know it will be a thing of the past in 2-5 years. The goal is to figure out exactly what bacteria sufferers are deficient in, and just replace the bacteria that way. I suppose this would be pill form? But he said it is in the works and will be seen in a few years. I thought that was interesting. Maybe similar to the "Poop pills" that are being trialed right now...
Anyway just thought I would give an update! I am still trying to stay active, eat lots and healthy to gain weight, and stay positive while I try this taper and get my donor tested. I will keep you posted on whether this taper works or not. Sending good thoughts and prayers to all those suffering with this disease right now

saraht
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Posts: 437
Joined: Mon Nov 30, 2009 6:00 am

Re: update- FMT scheduled!

Postby saraht » Thu Mar 20, 2014 12:28 am

Great news!! Glad to hear you are getting an FMT, and beat this beast down. I pray that soon they will have more figured out as far as gut flora and what we lack, and what we are missing. If, and when that day comes, I will rejoice, and dance.

Keep us updated! Keep thinking positive! I'll pray for you!!!!

-Sarah

seekingcure
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Posts: 1907
Joined: Mon Mar 25, 2013 1:28 am

Re: update- FMT scheduled!

Postby seekingcure » Thu Mar 20, 2014 1:12 am

I am so glad you found a doctor you like who is confident he can "fix" you. The Vanco taper may very well do it for you. It did for me. I was on one similar to yours, although I did have to keep starting over due to recurrent UTIs that necessitated concurrent antibiotics. Interesting that this doctor told you Dificid does not work that well for relapsing c-diff. My own GI also told me that, too; however, I know there are several on this board who were cured with it after Vanco and Flagyl treatment failed.

You sound like you are feeling much more optimistic now after your consultation with this doctor and that's wonderful news. He sounds like a "keeper."

Thank you so much for posting about everything you learned from him. Best wishes for your complete recovery. Bea
Bea

Nancy1
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Joined: Wed Jan 18, 2006 1:48 am

Re: update- FMT scheduled!

Postby Nancy1 » Thu Mar 20, 2014 2:14 am

The vanco taper that you describe was called vanco pulsing when I did it. Anyway, by whatever name, it worked for me, after 8 months of cdiff. So of course I hope it works for you too. Good luck.

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: update- FMT scheduled!

Postby beth22 » Thu Mar 20, 2014 2:16 am

Glad your visit with the doctor went well. I told you that you would like him. He did my first colonoscopy transfer and I liked him a lot, but I dont' live in northern CA, so I can't really see him as my regular GI. I think that doing the FMT despite doing the taper is a good idea. As you may have read, I did my own stool enemas at home following a course of Levaquin that I took along with vanco. Rather than waiting to see if I relapsed, I thought with my history it was more prudent to act quickly. So far so good, but I plan on doing a couple more.

Good luck and let us know how things go.

code3rn
Regular Contributor
Posts: 158
Joined: Tue Jan 07, 2014 3:32 pm

Re: update- FMT scheduled!

Postby code3rn » Thu Mar 20, 2014 10:33 am

Nancy you are right, it is pulse dosing! I always forget and call it a taper. Beth everything you had said about him was spot on, thank you for recommending him. I hope the home infusions will be successful for you!

sickofthis
Regular Contributor
Posts: 135
Joined: Wed Nov 13, 2013 9:21 am

Re: update- FMT scheduled!

Postby sickofthis » Thu Mar 20, 2014 1:57 pm

This doctor sounds amazing. I laughed so hard reading the comment "Cdiff "effs you up"!

I get the pulse dosing but what are cycles? You said "I am to take 4 doses of vanco every other day for 5 cycles, then 4 doses every third day for 5 cycles, then every fourth day for 5 cycles and finally every 5th day for 5 cycles.''

Is that weeks?


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