90 year old with recurrent C diff

[May24]

I am a caregiver of a 90 year old woman who has battled with C diff since early Feb 2017. Very long story short she has taken 2 rounds of Flagyl, 3 of Vanco with a taper dose for a month, and is now starting a third round of Dificid. She has had 6 total episodes. We are trying to get into a study that has FMT. My question is has anyone done the ORAL trial for the FMT and what does the process entail? Is there anywhere that offers the oral only? The study we are looking at right now offers a 50/50 chance of being given the oral and other process is an enema. I have read many people discuss "holding it" and am worried that she would be unable to do that. Do they put you under for the procedure? what happens if she can't hold it in given her age? Thanks for listening I had learned a lot for this site and am grateful for it

[roy]

I doubt if she could swallow the amount of pills for the oral procedure, they are very large and theres about 30 of them, its also not as effective as bottom up and can come with unwanted side effects.
Your asking this as if her Dr is trying something new, FMT is not new and is routine for some Drs, where are you in the world? Someone might be able to suggest a hospital/Dr that might do it without it being a trial.
One things certain, she is VERY ill and must be given the best option.
Is she in hospital?

[May24]

She is currently home. She has been in the hospital 3 out of the 6 times. The GI we use has never had to send someone for an FMT. I realize it is not new, however it seems not many people know too much about it. We are in Texas. Houston is where we have been trying to get the procedure done. They are still in the research stage apparently and from my understanding they either do oral or enema and we are required to pay $1500

[Julian80]

Hi may
If yall are willing to drive,there is a few docs that do them here in Austin.I would tell you the names but I think its against the rules,Im still being shoved around but I finally got an appointment with doc that offers fmt(criteria specific of course).Youre doing a good job helping her and advocating.I hope she feels better and stays that way.

[roy]

Google These Drs, FMT via colonoscopy might be better if she is fit enough to go through it.
Make sure they do not stop treating to "see what happens" they did that to my 90yo mom and she died 10 days later.




F. Lyone Hochman, MD, Houston, TX

Melvin K Lau MD and Dr Vu Nhu Nguyen MD, Round Rock, TX

[cnatra]

Hochman is at Methodist and works with Dr. DuPont on FMTs.

Dr. DuPont is a C Diff researcher at the Kelsey Foundation and still affiliated with Methodist I believe.

His son is at Memorial Hermann/UT and I believe he does FMTs as well .

Dr. Sheela Chandra at Kesley Seybold does FMTs using a screened family member.

Dr. Venodhar Julapalli in Spring does FMTs using OpenBiome.

I think there's a GI Dr. Suneal Agarwal downtown at Memorial Hermann also.

Honestly given the "reputation" of our med-center in Houston I've been disappointed with what seems to be a lack of C Diff specialists and familiarity with the latest thinking in how to treat recurrent C Diff.

[May24]

Just wanted to update we had an appointment at Scott and White in Tample, TX and the FMT pills are on backorder. She has been on Dificid 200mg twice a day for over 30 days now. My question is how long can someone stay on Dificid before it too starts to become ineffective? How long have some of you been on this? Thanks in advance for all the support

[NanciT]

I so sorry she is going through this terrible illness!!! I was on Dificid for 3 months. It was a long pulse taper and it DID work for me. We have several on the site who have been on a 30 day taper of Dificid and are also have done well.

At age 90 the concern for FMT would be the Prep and anesthesia. Speak with the GI about the Dificid taper.

Hoping all goes well on this visit.

NanciT

[georgina]

There are people who had very long courses of Dificid but most of them were young and otherwise healthy. Don't know if a very long course of Dificid is indicated for an elder as i heard it can be really harsh med to take. Although all meds can mess up your gut on the long run , vanco is more tolerable for longer courses then Dificid , side effects are almost 0.

[May24]

She is still on Dificid as of today. We have an appointment for the FMT this Friday. FINALLY!!! She will be taking the capsules as this is the way the doctor who saw her wants to proceed, given her age. I'm sure I may have several questions after but for now we are keeping fingers crossed and being very hopeful that this will work for her.

[roy]

If they do manage to source the capsuals can you ask who the provider was and post it on here please.
I hope this works for her, don't mess around if you think she is relapsing, be stern with the Dr and insist on aggressive treatment if it returns.
Good luck.

[amg]

Has she done a Dificid taper? That can be very effective in curing relapsing c diff, even after multiple relapses. IF she's tolerating the Dificid well and it has controlled her symptoms to something approximating normal, maybe that's something you can talk to her doctor about. For my daughter, who was cured by a Dificid taper after 4 relapses, the taper immediately after the regular Dificid course was 1 tablet per day for 14 days, then 1 tablet every other day for 7 more tablets.

Good luck!

[May24]

roy wrote:
> If they do manage to source the capsuals can you ask who the provider was
> and post it on here please.
> I hope this works for her, don't mess around if you think she is relapsing,
> be stern with the Dr and insist on aggressive treatment if it returns.
> Good luck.


I do not know where the capsules come from but we went to Baylor Scott and White in Temple, TX.

[May24]

Today is day 3 post FMT. She took all 30 horse pills very well and felt fine after. She has had two BM's since. Everything seems to be going ok although as her caregiver I can tell you that her BM doesn't look like her pre C diff "normal" at all……as if it was someones else's. So I guess things are going as they should!!!
I am wondering do we continue to give the Florsator or do we hold it for a while after the FMT? The doctors seem not to be able to answer

[roy]

Hope this is the cure for her.
Anything but watery D is normal so don't compare with any prior BMs.
It can take a while to all balance out.
Many Drs won't give answers about probiitics but quite a few say discontinue taking them after the FMT as they are not natural, she has just had the ultimate probiitic and you don't want to risk messing with it. (My oppinion)
I don't think there's anything official though and it's a try and see what happens thing.