New to C Diff: Will This Be the New Normal for Life??

Posted by day31 @day31, Jan 10 5:47pm

Newly diagnosed w C Diff due to “preventative antibiotics “ for a dermatology procedure 5 wks ago. I never heard of this infection before now but learned a lot from research. Med professionals saw no urgency in my earlier symptoms of high fever/diarrhea/fatigue until after 13 days, I insisted on fecal testing. Vanco worked but gave me a horrific debilitating stiff neck and shoulders after six days. I weigh hardly anything, and believe the powerful drug was brutal on my body, as neck pain went away soon after finishing Vanco. I'm wondering if I now have a reoccurrence after 1-wk off Vanco, or did I eat soft veggies too soon, as I worked to encourage positive gut health. Back on the BRAT diet but that’s not yet working. And when does nutrition take a hit, and we get another illness? Wondering too, if I'm over-hydrating which continues the watery diarrhea? I'll see a dietitian and GI specialist soon, but med staff seem clueless up til now. I miss real food and feeling like myself, which was athletic and very healthy as a retiree. Is this now the new normal, constant hyper-thinking on this? Needing to always stay near home? No more fun socializing midst great food? Is it like C Diff is “in remission “ until someday it shows up? This is all so unbelievable, maddening, sad, and honestly scary. Feel like I'm walking on eggshells yet can’t eat the yummy omelet. Any hope and guidance appreciated. Thanks, Everyone.

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day31 | @day31 | Jan 20 12:16am

I was given Vancomycin for 10 days a 125mg/4x. I found it started to take effect in two days (Yay!), but by Day 5, I had the worst stiff neck and upper back pain ever. I guess that may be a bit more common with IV forms of Vanco?? (I don't weigh much, so maybe that's a factor). Nevertheless, a lot of ice and honestly 24-30 hrs once off Vanco, the stiff neck was gone and all back to normal in that regard.

texgrand6 | @texgrand6 | Jan 26 1:41pm

In reply to @day31 "@texgrand6 Thank you so much for your kind words and ideas. I have made progress the..." + (show)

@day31 you are on the right track. Be relentless. If I feel I might have an imbalance of probiotics, I take aloe Vera in a soft gel. Clears up fast. Aloe is very healing. You might also try this. God speed.

cas924 | @cas924 | Jan 27 7:56am

In reply to @texgrand6 "@day31 you are on the right track. Be relentless. If I feel I might have an..." + (show)

@texgrand6 My gastro doc put Aloe (in any form) on my list of things to avoid (at least for a year and a half, as my gut heals) as she claims it could have a negative impact on the microbiome. Is it the aloe itself or could it be something that has known glyphosate exposure - I don’t know. Just wanted to share the info because I was surprised to find it on my “avoid” list.

day31 | @day31 | Jan 27 2:41pm

I'm unfamiliar with "aloe" in a diet. Can anyone explain further? Also I'm unfamiliar with "an imbalance of probiotics?" What is that and how does that happen?

I'm happy to report that I've had 3 wks of solid improvement (mind, body, and spirit) and I'm back to eating normally. Initially was mindful of FODMAP foods. Also I had acupuncture (3x over 3 wks) which I swear truly got me and my system back to working order so quickly. I honesty don't want to see another "prescription drug" ever again, if I have anything to say about it.

texgrand6 | @texgrand6 | Jan 28 1:54pm

In reply to @cas924 "@texgrand6 My gastro doc put Aloe (in any form) on my list of things to avoid..." + (show)

@cas924 I am surprised as well. I have had no issues with the softgels, but I understand why you don’t want to try at this point.

citron | @citron | Jan 31 8:51am

Two questions from me:

I could have c. diff but I'm waiting on results. Symptoms have developed in the past two weeks ish. When you first get it do you experience fluctuations in symptom severity? It's been dramatic but I think it's pretty early.

Also I'm very much struggling to eat. I live alone and haven't been able to clean much after surgery 3wk ago. I was already loosely following low FODMAP before all of this but now I am struggling to cook at all. Any suggestions? I'm slowly getting better but I'm already disabled (muscle issues/chronic pain) so I don't know when I'm going to be feeling better from all this. I'm hoping I'm not in for another round of antibiotics but I would be surprised if nothing shows up I'm definitely experiencing something.

@day31
Aloe is edible and you'll typically find it sold as a jelly in drinks or dessert. It's refreshing if you enjoy the texture but I don't know about health benefits.
For probiotics your gut needs a healthy balance of bacteria. Antibiotics or infection can harm your necessary bacteria so taking them orally is often recommended. Healthy people can find benefit from them especially if someone has a history of IBD. If you don't take any I suggest looking into it because you are just replacing what should be in your gut naturally. I used to take Florajen digestion recommended by PCP but I don't know if it's good for c. diff. I started taking it again 2wk ish ago and I'm not noticing much when it used to work within days. But I don't know what I'm currently experiencing either.

cas924 | @cas924 | Feb 1 8:01am

In reply to @citron "Two questions from me: I could have c. diff but I'm waiting on results. Symptoms have..." + (show)

@citron

I was diagnosed within 2 weeks of when I became infected and had mild symptoms compared to what some folks deal with. I think that is key - to get it diagnosed and treated early. The hardest part for me was dealing with the aftermath of what the c diff toxins and antibiotics did to my gut. Unfortunately I had to take Vancomycin, another antibiotic, to kill the CDiff, and that combo obliterated my microbiome. That’s when the fun started for me because I could not eat much at all and I dropped weight too quickly. I did best with chicken or beef broth and saltines. Not broth corn a can - it has too many irritating ingredients. I had to make it myself with only meat, water and salt. After taking some powerful probiotics I was able to eat more (low FODMAP) foods, and after a while it got better and better.

I pray your CDiff test comes back negative, and if it does, request a second test because there are a lot of false negatives.

citron | @citron | Feb 1 7:40pm

In reply to @cas924 "@citron I was diagnosed within 2 weeks of when I became infected and had mild symptoms..." + (show)

@cas924 It did come back negative. I think I'm sensitive to microbiome changes and that this could be because I had an appendectomy and had to take antibiotics.
I'm suddenly starting to feel better after being totally miserable. I'm not entirely sure what that is/was. I won't ignore it if it comes back but I think simply antibiotics could be a major factor. Not really much I can do if the symptoms are clearing up.
Personally I can't really handle beef. Chicken broth is good though. Chicken and rice are two of the things I tolerate best so normally I eat them often.
I've found my IBD symptoms manageable by cutting out allium, avoiding gluten and generally following low FODMAP, which was easy to do because I cook most of my meals and avoid a lot of those trigger foods anyway. Unfortunately I haven't been able to actually cook in a while.
I'm trying to not have too much health anxiety about this though there was definitely something wrong. I may be in for more antibiotics for different reasons and I keep having to come back in so it is still on my mind. I'm feeling a lot better right now and I'll take that at least.

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