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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Fidaxomicin. It must be new, because my dr thought there might be some issue with insurance, and I thought it would be expensive, too.

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In September I got both Ecoli & C-diff while traveling for the summer in our RV. Not fun! Dr. put me on Fidaxomicin, which is the drug name. Dificid is the brand name. My cost after insurance was $200, well worth it. It took awhile but eventually started feeling better after 2-3 months. Still had GI issues; diarrhea, abdominal discomfort but I kept taking a very good probiotic.
Unfortunately, I got really sick with my autoimmune issues in March which included a recurrence of C-diff. Again I was put on Fidaxomicin. The GI explained that cdiff is one of the bacteria that is always present in our GI but only causes problems when there is bad bacteria overgrowth. This is why the need for probiotics.
Fast forward to now; my GI issues are much better. I still take daily probiotics & have cleaned up my diet. I still have what GI doctor calls “ post infectious IBS” but so much better now. I can actually eat a salad now & then!
The probiotics suggested by the Dr. is Florastor.
Good luck on your GI journey!

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Profile picture for momac59 @momac59

In September I got both Ecoli & C-diff while traveling for the summer in our RV. Not fun! Dr. put me on Fidaxomicin, which is the drug name. Dificid is the brand name. My cost after insurance was $200, well worth it. It took awhile but eventually started feeling better after 2-3 months. Still had GI issues; diarrhea, abdominal discomfort but I kept taking a very good probiotic.
Unfortunately, I got really sick with my autoimmune issues in March which included a recurrence of C-diff. Again I was put on Fidaxomicin. The GI explained that cdiff is one of the bacteria that is always present in our GI but only causes problems when there is bad bacteria overgrowth. This is why the need for probiotics.
Fast forward to now; my GI issues are much better. I still take daily probiotics & have cleaned up my diet. I still have what GI doctor calls “ post infectious IBS” but so much better now. I can actually eat a salad now & then!
The probiotics suggested by the Dr. is Florastor.
Good luck on your GI journey!

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@momac59
Do you know what caused the initial C. Diff infection? Had you taken antibiotics, been hospitalized or had surgery in the preceding months?

Glad you have recovered and that the medication was more affordable than when I bought it.

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Profile picture for cas924 @cas924

@momac59
Do you know what caused the initial C. Diff infection? Had you taken antibiotics, been hospitalized or had surgery in the preceding months?

Glad you have recovered and that the medication was more affordable than when I bought it.

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@cas924
I really think my immune system was overwhelmed trying to deal with the Ecoli infection. That’s what my Doctor & I came up with. I had not been on antibiotics for a couple of years before that.

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Profile picture for texgrand6 @texgrand6

@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.

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@texgrand6 HI, I know this post is super old by now but I'm super interested! What exactly does the aloe vera soft gel do for you? What does it "clear up fast"? Thanks--

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Ok. I can tell you that when I get loose bowels , I take aloe Vera in a soft gel. I get one by Carlyle available on Amazon. I take one or two with a little kefir at night. I continue until I am better. It works really quick for me. It’s would be ok to take two softgels. Also, I take probiotics daily and increase my intake whenever I am taking antibiotics. I hope this info helps.

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Profile picture for mrsjohn101 @mrsjohn101

@chrismkc hello, keep up with your probiotics . Probiotics are temperamental. They like a cool to cold environment. Please avoid anything warm or hot for at least two hours after eating, drinking, or taking pill form probiotics. Please take your probiotics in the moring and at bed time. According to a world renowned infectious disease doctor Vancomycim does not cure C-Diff. It slows it down and gives a false negative for C-Diff. And ask your doctor about VOWST. This is not an antibiotic. It has gone a long way to help people get rid of C-Diff.
There is an Antibiotic called DIFICID.
Two pills a day for 10 days. Very expensive but effective.
I pray you find this helpful.

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@mrsjohn101
I have been on two rounds of each of these antibiotics and daily visbiome( that I keep in fridge). Feeling a little better and tolerating more foods. I meet with my gastroenterologist to determine whether to go for the Vowst spore therapy. Thank you for your advice!

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Profile picture for chrismkc @chrismkc

@mrsjohn101
I have been on two rounds of each of these antibiotics and daily visbiome( that I keep in fridge). Feeling a little better and tolerating more foods. I meet with my gastroenterologist to determine whether to go for the Vowst spore therapy. Thank you for your advice!

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@chrismkc keeping you in my thoughts and prayers

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Here are my favorite foods that I love while I've been recovering from C Diff. I'm on Day 5 of my post-vancomycin treatment and so far so good.

1. Saltine Cracker, Deli Ham, Few drops of mustard

I use Hormel Natural Choice Smoked Ham. So addicting.

2. Simple Truth Applesauce with Cinnamon

All natural sugars ; cures my sweet tooth

3. 8oz glass of chocolate milk

I use 2% Lactose Free Milk with 1 teaspoon of unsweetened cocoa powder and 2 teaspoons of cane sugar for sweetness. Gives me my calcium intake for day and craves my sweet tooth.

4. Cotton Candy Grapes

All natural sugars ; cures my sweet tooth

5. Salmon and cucumber sandwich w/mayo.

I peel the skin, deseed the cucumbers, and use 2 tablespoons of Hellman's light mayo (it's about 7G of fat) and then salt and pepper the cucumbers on white bread. So yummy.

6. Maruchan ramen instant noodle packets.

The key takeaway is to cook the noodles for a longer time to break down starches. DITCH the seasoning packet and instead season with light amount of salt and ground black pepper. If you can later tolerate Lawry's season pepper it elevates it to a higher level. Flavor profiles goes up 10 fold, but might not agree with your gut.

7. Oatmeal chocolate chip cookie (instant oats, banana, chocolate chips)

I make them with quaker oats instant oatmeal packets, mashed up bananas and a few semi-sweet milk chocolate chips for sweetness. I use 4 packets maple brown sugar packets and 2 mashed up bananas to create the dough and then sprinkle in a small amount of chocolate chips for flavor. They are not the greatest, but it is healthier alternative that cures my sweet tooth. I get the benefit of the oats and the bananas. Chocolate just exists for my sanity.

8. Turkey and light mayo sandwich w/ salt and pepper.

I use Dietz & Watson Organic Roasted Turkey Breast and Hellman's Light Mayo.

9. Oven Roasted Potatoes with Diced Cucumber Chunks (skin removed and deseeded), salt and peppered.

Great combination. Repurpose my cucumbers for something else as well.

10. For unhealthier foods (sometimes I cheat the system and eat a bowl of Lay's Chips) how I get away with it is by spacing smaller portions between the day. Instead of eating a LARGE bowl of chips, I have 3 or 4 smaller portions throughout the day. This way I'm not digesting 25G of fat and instead just 8-9 grams from one serving.

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