What's normal in recovery, die off reaction? etc

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notheidi
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What's normal in recovery, die off reaction? etc

Postby notheidi » Tue Aug 09, 2022 9:04 pm

Oyyyy this is my first day off 14 day vanco course. I'm not feeling great. Fatigue, chills, some mild cramping and mild nausea. No D. Felt better on the vanco. Hoping things will sort themselves out. Just no fun. C diff is a long recovery. Not sure if I'm having a die off reaction or if this is post infectious IBS or symptoms brewing.
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: What's normal in recovery, die off reaction? etc

Postby NanciT » Wed Aug 10, 2022 3:23 pm

It is very individual, the main thing is if severe D returns, contact your doctor. When getting off medication, some go right back to eating their normal diet and go forward without issue. I had IBS for a long time and had to go back and forth with a bland diet never adding beef or any alcohol again....but that is just me.
We have so many posters that were 100%. The gut can take time to heal, for me it was a process. Try not to let the fear take over that it is back.

The best thing is to start slow, add new foods and see how you do

Give yourself time to heal

Take Care

NanciT

notheidi
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Posts: 266
Joined: Sun May 17, 2015 11:24 am

Re: What's normal in recovery, die off reaction? etc

Postby notheidi » Wed Aug 10, 2022 11:22 pm

Nanci, thanks for the words of encouragement.

The fatigue is a lot to deal with, body has just been through a big fight. This is a time to rest and recover. I wish I had taken 2 weeks off work. I could only afford one week and felt I had to push myself to return. I have to remind myself that even though I'm done with the antibiotics, I'm still "sick," ie body is still normalizing itself, good gut bacteria are still working on regenerating, etc.

I have been able to tolerate food quite well, with the exception of yesterday when I had to downgrade my diet for dinner for some reason.

I haven't been ready to try spicy food, broccoli, or beef (just seems like a bad idea), but I can eat everything else. I'm drinking 5 oz of kefir twice a day (down from 3 times), which is still a LOT of kefir! I'm not brave enough to make my own so this is getting expensive but for the mental comfort it's worth it.

This is just a lot to wrap my brain around. I cleaned all the surfaces I can multiple times with c diff wipes, but it's still hard not to feel like spores and danger is lurking everywhere. I wasn't around anyone because of covid, wasn't on antibiotics, etc. My doctor said the bacteria is ubiquitous. It's so weird, how am I supposed to understand that it wasn't a problem, then it became a problem, then I took antibiotics, and now it's magically not a problem but is still everywhere?! I look forward to better therapeutics and hopefully a vaccine someday because this is a lot to live with. I know that as I get further out from the infection, I will feel better if I am able to remain well, and things will slowly normalize again.
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize

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

Re: What's normal in recovery, die off reaction? etc

Postby NanciT » Thu Aug 11, 2022 10:21 am

I agree, the further you get away from treatment...the better off you will be. The fear will go away. I taught in a hospital and found myself not wanting to touch anything. It took time. I became far more cautious and continue to do so although I am not obsessive about it. I also worked through the year I had CDIFF. Although I had alot of abdominal pain after my Dificid taper, I found getting out there better for me. I did land in the ED several times that year but in the end found the Vanco taper they had me on cause LOW potassium and it became a serious issue until I was given it IV. Something all the doctors missed at the time.

Being your own advocate as you work through this "post" Cdiff time will help. Everyday you get further away and stronger the less you will think about it.

You will get there, just time

NanciT

notheidi
Regular Contributor
Posts: 266
Joined: Sun May 17, 2015 11:24 am

Re: What's normal in recovery, die off reaction? etc

Postby notheidi » Mon Aug 22, 2022 9:52 pm

[quote="NanciT"] the Vanco taper they had me on cause LOW potassium and it became a serious issue until I was given it IV. Something all the doctors missed at the time. [/quote]

Wow, I had no idea that a vanco taper can cause low potassium. I'm glad they caught that! A family member was in the cardiac unit for low P, that's serious.

PI-IBS is no joke. Twice I have upgraded my diet too soon and had return of D. This second time is particularly bad. I've had to go back to mostly liquid diet today and am waiting to see if the D becomes profuse again or whether I can make it out of this time safely. Lesson learned. I had a pint of ice cream and a bag of chips at the end of a rough week. Ugh!!! Can't digest that stuff. I was actually ok in the immediate term, just 24-48 hours later things did not go well. Basically right now I'm feeling like I did in the prodrome leading up to the c diff, so I'm waiting to see if I can recover from my dietary indiscretion or whether this is going to blow up. It seems like I am responding well to the modified liquid diet today so keeping my fingers crossed. I hate being on this diet because I feel hungry.
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize


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