C Diff experience, anyone?

[Spryte]

I want to cry.  I have been sick since mid-May.

Years ago I had recurring C Diff.  Flagyl didn’t touch it.  I finally beat it with a long term vancomycin treatment with a long taper.  At the very end, I had an adverse reaction to the vanco.  

Here I am again, darn it. 10 days of Flagyl didn’t help.  I’m trying a new drug for it.  Dificid?

Any experience/advice?

Of course I’m taking Florastor, good probiotics, Candibactin AR and BR, and drinking kombucha, etc.  

I’m so sick of this and exhausted.  Ugh.

[Kanin]

That's awful, I'm so sorry. Check out Atrantil on Amazon. It's got lots of good reviews.

[City Mouse]

I am so sorry you are dealing with this. My MIL got CDif after a stay in a rehab facility. To get rid of it, she was moved into the master bedroom at my SILs house so the she was not sharing a bathroom with anyone (to avoid anyone else getting it). It took several weeks of antibiotics, and my SIL followed her around all day long disinfecting surfaces with bleach water. The bacteria can survive on flat surfaces for several days. While in the rehab place, it seems that she kept getting reinfected. 

[Ottakee]

My DD had it and I finally convinced the GI doctor after 6 months of flare ups to do a fecal transplant.  Never had another issue and she woke up from the colonoscopy feeling better than she had in 6 months.

[Spryte]

4 minutes ago, Ottakee said:

My DD had it and I finally convinced the GI doctor after 6 months of flare ups to do a fecal transplant.  Never had another issue and she woke up from the colonoscopy feeling better than she had in 6 months.

 

Thanks.  I looked into this last go round, and we may have communicated about it then, I can’t recall.

I’m seeing a new GI in a few weeks and plan to ask.  

Did your DD know her donor or use a bank like Open Biome?  I will have to use a bank, If it’s an option for me.  I’m desperate, so I hope it is.

starting Dificid tomorrow am as soon as the pharmacy is open.

So miserable.

[Ottakee]

1 minute ago, Spryte said:

 

Thanks.  I looked into this last go round, and we may have communicated about it then, I can’t recall.

I’m seeing a new GI in a few weeks and plan to ask.  

Did your DD know her donor or use a bank like Open Biome?  I will have to use a bank, If it’s an option for me.  I’m desperate, so I hope it is.

starting Dificid tomorrow am as soon as the pharmacy is open.

So miserable.

*I* know her donor, she does not.  Donor is someone I know but didn't want my DD to know who it was.

That was 4 years ago so things are rapidly changing.  I have even head of doing a pill form now in some cases.

[Spryte]

4 minutes ago, kand said:

Our experience with it was like Ottakee’s.  Transplant was the answer and worked quickly after five months of dealing with constant relapse. Ours did not require colonoscopy.  I’m so sorry you are dealing with that again. 

 

Eta: how much florastor are you taking? 

 

Oh goodness, I’m sorry you dealt with it also.  

I have fmt questions, same ones I asked ottakee... did you guys use a bank or a known donor?  I’m so desperate.  

I’m taking two Florastors, twice a day.  In between Flagyl doses (4 hours away from Flagyl).  

Way back when, when I had months and years on end of this, I feel like I had less pain.  Tonight I’m really having some low back and front pain.  Ugh.  

[Pippen]

Dificid worked well for my family member, followed by a gradual Vanco taper. 

[Spryte]

1 minute ago, Ottakee said:

*I* know her donor, she does not.  Donor is someone I know but didn't want my DD to know who it was.

That was 4 years ago so things are rapidly changing.  I have even head of doing a pill form now in some cases.

 

Ah, ok.  Yes, years ago when I looked into this - I needed to find my own donor.  I could not find a good candidate, so we just kept treating and eventually I beat it.

No there are bank options, I think.  I hope.  

[Spryte]

1 minute ago, Pippen said:

Dificid worked well for my family member, followed by a gradual Vanco taper. 

 

That is good to hear.  Thank you.

[Spryte]

51 minutes ago, kand said:

Known donor here. I think I pm’d you years ago, but I’d be happy to give you what details I remember again. I used two florastor three times a day. I had a lot of pain with it as well. 

 

Thank you.  I do think we talked about it years ago when I struggled.  I couldn’t find an appropriate donor, so we just kept treating with meds and eventually I seemed to beat it.

I don’t recall a lot of pain with my past rounds, at least not this consistent, hot feeling.  But it’s been a while.  It makes me feel better to hear you had pain, too.  I’m sorry you did, but glad you are over it!

This round came out of the blue.  My pet theory is that I had a salmonella infection in May and that caused an imbalance.  But... no idea.  

For tonight, I’m hanging with a heating pad.  New meds tomorrow, and I’ll text my doc about Open Biome next week.  

 

[AK_Mom4]

I had it.  Contracted after a stay in the hospital with emergency gall bladder surgery.  I won’t lie - it nearly killed me before we figured it what was wrong.  That’s not an exaggeration - it was in renal failure caused by malabsorption.

i think it was Difficid they put me on that worked.  They tried vancomycin first but I broke it in huge hives in just a few hours (lovely).  Difficid was a big pill, but I felt better after just a couple of days.  30 days to get it fully knocked, but it worked.

 

[Harriet Vane]

I'm so sorry you are sick again! 

When I was infected with C diff, I did some research, and it is my opinion that they should stop bothering with Flagyll. It doesn't work. It is considered the first line of defense primarily because it's so cheap, but it is simply not very effective. I think it just buys time for the infection to really get entrenched in your system rather than knocking it out as Vancomycin or Difficid would. I get downright angry at the passivity from the medical community on this--they should stop "giving it a try" and go directly to the drugs that are effective.

Difficid has a great track record, though. As quickly as you can possibly start on that, do so.

You are also doing the right thing with Florastor.

I will pray for you, Spryte. I'm so sorry you are so miserable.

[geodob]

What can be very helpful, is what is called 'Resistant Starch'.
This is starch that isn't digested by the small intestine.  But it is a Soluble Starch, and when it reaches the Colon. It absorbs water and turns into a Gel.
A number of different important microbiome bacteria, will only grow in this Gel.  Which they ferment in.
Where they produce some 'chemicals', important for health.   (Butyrate, Propionate and Acetate).
Studies have shown, that increasing daily intake of Resistant Starch,  can cause C-Diff to disappear from the Digestive System.

Here's a link, that outlines some common foods, that contain Resistant Starch.
https://www.healthline.com/nutrition/9-foods-high-in-resistant-starch

[BeachGal]

The food additive trehalose may be contributing to c diff infections.

Eating a wide variety of prEbiotics can help, but at this point, getting a fecal transplant from a healthy donor would probably be your best bet.

[Spryte]

Thanks.  

I’m, unfortunately, still on Flagyl.  Insurance won’t cover anything else without a pre-authorization and doc called them in on Fri night.  So I wait.  Doc called in more Flagyl while I wait, but no improvement.

Spent yesterday, all day, in the ER.  I was having pain that was reminiscent of pancreatitis.  But the CT and bloodwork looked ok.  That’s good, at least I’m not (literally) dying, though, man, it feels miserable.

DH is out of the country till Wed, so I’m counting on the kids to be helpful.  [Snort!]

I’m just so drained at this point.  We’ve had a life like a country song lately, all the Bad Things keep happening.  Gaaaaah!  

Thanks for the well wishes and ideas.  I’m off to read and research more.

 

 

[Spryte]

9 hours ago, geodob said:

What can be very helpful, is what is called 'Resistant Starch'.
This is starch that isn't digested by the small intestine.  But it is a Soluble Starch, and when it reaches the Colon. It absorbs water and turns into a Gel.
A number of different important microbiome bacteria, will only grow in this Gel.  Which they ferment in.
Where they produce some 'chemicals', important for health.   (Butyrate, Propionate and Acetate).
Studies have shown, that increasing daily intake of Resistant Starch,  can cause C-Diff to disappear from the Digestive System.

Here's a link, that outlines some common foods, that contain Resistant Starch.
https://www.healthline.com/nutrition/9-foods-high-in-resistant-starch

 

Thank you.  Some of those are among the few foods I can eat now. I will make sure to prepare them properly to optimize the benefits.

[Harriet Vane]

Spryte, I'm so sorry about this stupid pre-authorization delay. Ask your doctor to ride their tail for that authorization. C diff is nothing to play around with, as you well know.