Need info on FMT procedure

If you have had or are considering an FMT please share your experiences here.
Babs
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Joined: Mon May 23, 2016 12:51 pm

Need info on FMT procedure

Postby Babs » Mon May 23, 2016 1:04 pm

Hi,
My elderly mother has been battling C-diff for a year now. She picked up the bug when she was hospitalized with pneumonia. Have to assume they gave her a potent antibiotic. She was also diagnosed with CHF. About a week after returning home she started having problems with D. The assumption was that it was being caused by the heart medications. Unfortunately no one thought it might be caused by something else. Imodium kept things in control, but eventually that failed and she went to the hospital to find out what was going on. That’s when we learned she had the C-diff. They put her on the vanco and it seemed to do the trick. Once home she continued to use the med. But after 14 days of stopping the vanco use, the D came back. She was hospitalized again and we went through the same process. Went back on the vanco for a longer stretch, but 9 days after stopping it the nasty bug came back for the 3rd time.

She didn’t need to go back to the hospital, her doctor immediately put her on the vanco taper/pulse thing. But that didn’t work. So we repeated the taper/pulse thing for a longer duration. On the advice of our primary doctor we went to consult with a GI specialist. He told us about Mom’s options. We could finish the taper/pulse course, then take 1 vanco pill a week form maintance. That seemed to work for 3 weeks. But of course it came back and now she’s back to taking a stronger dose of vanco 4 times a day for 30 days.

During the consult the GI doctor mentioned trying Dificid or do a FMT. Given Mom’s age and fragility he felt that her doing the FMT in the pill form would be easier on her. Now that the bug has returned for the 5th time he recommends that she go for the FMT treatment. Though she would really like to try the Dificid first. I called doctor’s office about that. But he’s off for a week. Won’t know till next week what his opinion is on her trying that. Otherwise it sounds like she’ll have no choice but to do the FMT treatment.

Unfortunately her GI does not do the FMT treatment with the pills. Only by colonoscopy. So Mom will need to see another doctor who does. She’s not happy about that. Aside from being elderly Mom is also blind and she doesn’t like dealing with strangers. She also doesn’t take well to not knowing what to expect ahead of time. I am posting here in the hope that someone who’s had the FMT pill treatment can walk me through the procedure so I can tell her what to expect. We tried asking current GI doctor’s nurse, but she has no knowledge of the pill treatment.

Can anyone tell me from their own experience what the procedure involves? Will Mom have to do anything to prepare for the FMT? What can she expect when she gets to the clinic? Will she have to get undressed? Will they just give her the pill to swallow and send her home? Or will she have to stick around awhile? Can she expect to have some kind of an immediate reaction to the pills? Do the pills have any adverse effects? How long does it take for the pills to work? What if they don’t work? Will they make her feel sick?

Sorry for all the questions. I know the doctor will answer most when we see him/her. But the more info I can share with Mom the more comfortable she’ll feel about going through with the treatment.

Thank you for reading and for any responses. We'd appreciate all the information we can get.

Babs

gwang
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Joined: Tue May 17, 2016 1:14 pm

Re: Need info on FMT procedure

Postby gwang » Mon May 23, 2016 1:19 pm

If the dr. is using Openbiome material then please read here: https://static1.squarespace.com/static/ ... Primer.pdf

They will probably have her discontinue her ABX 2 days prior to the pills. Start PPI's 48 hrs prior to administration. The day of the procedure they will have her test a 00 size capsule to see if she can swallow without issues. She is then told to consume about 15-30 capsules in 1 sitting (2 hrs). She will not have to undress for the pill administration.

Of course, I'm not a medical dr. so please read the link provided above for the procedure.

roy
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Re: Need info on FMT procedure

Postby roy » Mon May 23, 2016 3:06 pm

I have no personal experiance but if Moms fragile I dont think she will manage the amount or size of the capsules.
I wonder if they would consider administering them by gastroscope under sedation?
Only thinking aloud because I have never heard of it being done but its a possible alternative to an anasthetic for the colonoscopy route.
How old is your Mom?

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

Re: Need info on FMT procedure

Postby beth22 » Mon May 23, 2016 9:36 pm

I have had it done with an NG tube, but it is not the most comfortable thing. However, it is quick. That was back in 2008 though and I think most places use pills now. I also had it done via upper endoscopy along with a colonoscopy. The upper endoscopy does require sedation, however, but less than with a colonoscopy I think. Ask how big the pills are and how many need to be swallowed. Some people have no difficulty swallowing pills and others have a great deal of difficulty.

Babs
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Joined: Mon May 23, 2016 12:51 pm

Re: Need info on FMT procedure

Postby Babs » Wed May 25, 2016 7:35 pm

Thank you all for responding. Mom is 87. Right now the FMT treatment is on hold. Her doctor, or his nurse, now says that the doctor wants her to finish her current course of Vanco. Then if she still has issue she could try the Dificid. I'm getting the impression that he rather use the FMT as a last resort. Mom was pretty happy when I told her the doctor would like to wait. So I really don't know what our next step is.

Mom has been lucky in that her only symptom has been D. No stomach pain or anything like that.

I just wish there could be an end to this business. My heart goes out to everyone dealing with this nasty bug.

Babs

roy
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Re: Need info on FMT procedure

Postby roy » Wed May 25, 2016 8:13 pm

The reason I post here is that my Mom age 90 died of this in 2007.
She caught it after treatment for pneumonia.
I am still here so that I can support someone like your mom.
C.diff is very deadly for older people.
After a 5th relapse theres only around a 10% chance that meds will cure it.
Staying on meds without a break to see if its gone is a life extending option, coming off meds "to see what happens" like they did for my mom is deadly.
I doubt if dificid will be any diferent to vanco because the amount of meds she has already taken has decimated her gut flora, dificid is only superior if its used first before any other treatment.
FMT even if she has to be put out for it might have better odds for her surviving than medication.
The ideal time for FMT is 2 days after finishing her current course of vanco
You have to be her advocat and insist on her Drs keeping you informed about her condition and be activly involve in decisions about her treatment.
This needs agressive treatment and if remotley possible an FMT is probably the way to go.


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