FMT with a Colostomy

If you have had or are considering an FMT please share your experiences here.
Roxanne
Regular User
Posts: 56
Joined: Tue Jan 24, 2017 12:10 am

FMT with a Colostomy

Postby Roxanne » Thu Jun 30, 2022 6:11 pm

I'm back, after 4 years being C-diff free. Originally, I had C-Diff for 7 long years. Dificid, kept it down, but didn't cure. Was on it for 3 years. FMT saved my life!

Long story short, not from the FMT, ended up with a colostomy. I'm back on the Dificid 2x a day, less reduction in symptoms as before. Meds go right through my shortened intestines, which could be the issue.

I'm finding nothing online about an FMT with an ostomy.

Does anyone have information about this, or can direct me?

My body can't handle another long bout of this.

Also, any current clinical trials? (I may not be accepted with an ostomy, but worth a try)

Thank you for this site, it was here I learned about FMT's, diet, and support. I wouldn't have survived without everything I learned here. Doesn't look busy as it used to be, shame.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: FMT with a Colostomy

Postby NanciT » Fri Jul 01, 2022 11:15 pm

Hello Roxanne

I am so sorry you are going through all of this. The only suggestion I can come up with is make sure you are seeing a good ID specialist. With your history being complicated and also difficult to treat I think it's important to have one on board.

Usually a Dificid taper will work and I can't imagine being on it that long. Both times I went on long 3 month tapers and it worked for me.

I hope you have excellent doctors that have experience with tough cases

Hope you feel better soon!

NanciT

Roxanne
Regular User
Posts: 56
Joined: Tue Jan 24, 2017 12:10 am

Re: FMT with a Colostomy

Postby Roxanne » Sat Jul 02, 2022 10:50 am

Thanks Nancy! Trying to get in to see ID, still waiting for the referral to go through, doctors here vs Chicago, a world of difference for the worse. GI Dr out of country.

I talked to the Dificid company, no information on having an ostomy with it. Pills go right through me, many come out whole. Found a government site, about crushing the Dificid, said it's good for 2 hours at room temperature. Can me mixed with applesauce, water, Ensure. So getting a pill crusher this morning, and hoping will slow the progression down.

Dificid does have a child's formula, you mix with liquid, 40mg, so I would have to take 5 doses 2x a day, to get 200 mg. I know insurance would never pay it.

Call in to C-Diff foundation, I can't find any information about an FMT with an ostomy, I would think it can be done

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: FMT with a Colostomy

Postby NanciT » Sat Jul 02, 2022 6:23 pm

Your case is compicated. Having an ID on board is really important even if you have to travel, then can do video's after that.

It is very TOUGH having a difficult case.

Hope you get in soon


Take Care

NanciT

lcondo
Brand New Poster
Posts: 1
Joined: Fri Feb 04, 2022 8:22 am

Re: FMT with a Colostomy

Postby lcondo » Tue Jul 05, 2022 3:24 pm

If I remember you are in Florida
Please there are a lot of hospitals including Mayo in Florida .
Please call Mayo.
Lidia

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: FMT with a Colostomy

Postby roy » Tue Jul 05, 2022 4:16 pm

Hi lidia
Your old ID is Lid49.
Best to use that if you can.

Roxanne
Regular User
Posts: 56
Joined: Tue Jan 24, 2017 12:10 am

Re: FMT with a Colostomy

Postby Roxanne » Tue Jul 05, 2022 11:22 pm

I have an injured right foot, can't drive distance and alone in this horrible state. The local hospital, I found out today stopped FMT's, because some people brought in their donor poop in, and they got ill Arghhhh Why didn't they just allow from the bank, so now everyone suffers.

I'm calling the hospital administrator tomorrow, see if this can be reversed.

GI Dr won't see me, because the hospital won't allow FMT's Still waiting for ID to get the referral. I just want to move back to Chicago, medical care here, and everything else is horrible.


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