Living with High-Risk C-Diff and Preventing Re-Infection

Posted by Faithwalker007 (Renee) @faithwalker007, Feb 13 12:53pm

My name is Renee or Faithwalker007 for those who may have met me in the Chronic Pain, Neuropathy, Addiction, and other groups having to do with CRPS type 2. I am a chronic C. Difficile patient with 5 cases of C. difficile infectious colitis under my belt. The antibiotic that I’m at now to treat it is Vancomycin. I’m at the stage of recovered, but HIGH-RISK. I guess at any time another flare can hit depending on the circumstances— hospital visit, exposure to community source (the initial cause,) illness requiring antibiotic treatment, etc.
My main issue is persuading OTHERS like nurses, doctors… to exercise PREVENTION MEASURES if I need any procedures which was a contributive cause to my last and worst case.
Does anyone else have problems like this? I have nobody to talk to about this. The subject is awkward since c diff is not exactly considered a subject for dinner time or casual conversation.

Hi @faithwalker007, I added this discussion to the Digestive Health group as well as the Infectious Diseases group. We have several discussion about C-difficile:
– What happens after C.Difficile? https://connect.mayoclinic.org/discussion/what-happens-after-c-diff/
– C-Diff, over use of antibiotics and medications that have helped me https://connect.mayoclinic.org/discussion/c-diff-over-use-of-antibitoics-and-results/
– Asymptomatic c diff carrier https://connect.mayoclinic.org/discussion/asymptomatic-c-diff-carrier/
– Trying to recover from a c. diff infection (Clostridium difficile) https://connect.mayoclinic.org/discussion/i-am-trying-to-recover-from-a-c-diff-infection-this-started-with/

However, I like the focus on prevention when living with high-risk of reinfection. I'd like to bring @sandyabbey @losthope @ngorman25 @mhi @cece55 @pines @virgo1952 @astaingegerdm and others into this discussion.

What are your prevention tips? What prevention measures have been recommended by your health care team?

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@colleenyoung

Hi @faithwalker007, I added this discussion to the Digestive Health group as well as the Infectious Diseases group. We have several discussion about C-difficile:
– What happens after C.Difficile? https://connect.mayoclinic.org/discussion/what-happens-after-c-diff/
– C-Diff, over use of antibiotics and medications that have helped me https://connect.mayoclinic.org/discussion/c-diff-over-use-of-antibitoics-and-results/
– Asymptomatic c diff carrier https://connect.mayoclinic.org/discussion/asymptomatic-c-diff-carrier/
– Trying to recover from a c. diff infection (Clostridium difficile) https://connect.mayoclinic.org/discussion/i-am-trying-to-recover-from-a-c-diff-infection-this-started-with/

However, I like the focus on prevention when living with high-risk of reinfection. I'd like to bring @sandyabbey @losthope @ngorman25 @mhi @cece55 @pines @virgo1952 @astaingegerdm and others into this discussion.

What are your prevention tips? What prevention measures have been recommended by your health care team?

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I have no health care team for my C. diff. I have been teaching myself, doing what I’ve thought best. I’ve been literally hung out to dry.

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@faithwalker007

I have no health care team for my C. diff. I have been teaching myself, doing what I’ve thought best. I’ve been literally hung out to dry.

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Hi Faithwalker007. Yeah. Getting C diff is not fun. Not sure of your c diff back story. I became infected after my colon re-section. I believe I got this bacterial infection while in the hospital, but the symptoms were so similar to my surgery/re-section post healing, the Dr did not order the test for 2 1/2 months after I came home. (By then, I was sending daily emails). I was unaware of the fact that I was in a high risk group (no info or conversation). I finally was tested (positive) and given two rounds of strong antibiotics. Since then, I am aware of the signs and have learned to document, document, document. Hopefully, I will never have to contact this Dr again regarding a possible infection. I know I am lucky to not have reoccurring infections. I am good with adding pre and probiotics (food and supplements) to my diet so I have good bacteria. I wish I had more info to share. Like me, you may get more info from the members than your medical provider. It really helped me figure out what was going on and who I should talk to. Take care. virgo52.

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@virgo1952

Hi Faithwalker007. Yeah. Getting C diff is not fun. Not sure of your c diff back story. I became infected after my colon re-section. I believe I got this bacterial infection while in the hospital, but the symptoms were so similar to my surgery/re-section post healing, the Dr did not order the test for 2 1/2 months after I came home. (By then, I was sending daily emails). I was unaware of the fact that I was in a high risk group (no info or conversation). I finally was tested (positive) and given two rounds of strong antibiotics. Since then, I am aware of the signs and have learned to document, document, document. Hopefully, I will never have to contact this Dr again regarding a possible infection. I know I am lucky to not have reoccurring infections. I am good with adding pre and probiotics (food and supplements) to my diet so I have good bacteria. I wish I had more info to share. Like me, you may get more info from the members than your medical provider. It really helped me figure out what was going on and who I should talk to. Take care. virgo52.

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Thanks virgo52, as far as backstory, it’s pretty straightforward. I contracted my first case from the community, either from Deadwood at one of the casinos, or from church from a fellow member who’s son had it in Denver Children’s Hospital at the time (he was a cancer patient- fully recovered, by the way.) I proceeded to go to the doctor for three weeks and was told I had the stomach flu. Finally ended up in the hospital, severely dehydrated, dangerously low BP, low BS, and tested positive for C Diff and with infectious colitis.
I was started on Flagyl, and Doxycycline, and something else, and continued to dehydrate. It’s a blur, I’m just telling you what they told me. Because I’m epileptic, they had me pretty sedated. They were going to transfer me to Casper or Rapid City, but my bowels would not allow it. They switched me to IV Vancomycin and I began to improve. Another three or four days later, i was well enough to go home. I remained on Vancomycin for two more weeks.
Within four days, I was sick again. They started another course. 14 more days. I was okay until a few months later I received Clindamycin for a skin infection. Wham! The infectious colitis was back and I was tested. C diff was back. They tried metronidazole and the other meds. No luck. Back on Vancomycin it was. Two weeks. Knocked it out.
The next round was about two or three months later and I really don’t know if it was C diff or a stomach bug. All I know is I had severe diarrhea and my PCP said “here’s some Vanco, we are not messing with this.” I took ten days of it and it was gone.
The last round was after my DRG Spinal Cord Stimulator Insertion. I had been tested pre-op and know that I had no active C diff infection. I warned all of my doctors, nurses (pre-and post-op), anesthesiologists, everybody that I was a HIGH-RISK C DIFF PATIENT WITH 4 PREVIOUS BOUTS IN THE PREVIOUS YEAR. NOT A SOUL TOOK PRECAUTIONS OR PASSED THE WORD TO THEIR CO-WORKERS.
I went home the next day after profusely complaining to the FLOOR NURSE.
Within 48 hours, I had C Diff signs and symptoms and within the next 24 hours I had the worst full-blown case of C diff I had ever had. I was literally crawling on the floor to the bathroom for three days. I called my doctor and they started me on vancomycin AGAIN.
I have never been referred to a GI SPECIALIST. I have never been referred to INFECTIOUS DISEASE SPECIALIST. I SIMPLY DO THE RESEARCH AND MAKE SURE I’M OKAY.

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@faithwalker007

Thanks virgo52, as far as backstory, it’s pretty straightforward. I contracted my first case from the community, either from Deadwood at one of the casinos, or from church from a fellow member who’s son had it in Denver Children’s Hospital at the time (he was a cancer patient- fully recovered, by the way.) I proceeded to go to the doctor for three weeks and was told I had the stomach flu. Finally ended up in the hospital, severely dehydrated, dangerously low BP, low BS, and tested positive for C Diff and with infectious colitis.
I was started on Flagyl, and Doxycycline, and something else, and continued to dehydrate. It’s a blur, I’m just telling you what they told me. Because I’m epileptic, they had me pretty sedated. They were going to transfer me to Casper or Rapid City, but my bowels would not allow it. They switched me to IV Vancomycin and I began to improve. Another three or four days later, i was well enough to go home. I remained on Vancomycin for two more weeks.
Within four days, I was sick again. They started another course. 14 more days. I was okay until a few months later I received Clindamycin for a skin infection. Wham! The infectious colitis was back and I was tested. C diff was back. They tried metronidazole and the other meds. No luck. Back on Vancomycin it was. Two weeks. Knocked it out.
The next round was about two or three months later and I really don’t know if it was C diff or a stomach bug. All I know is I had severe diarrhea and my PCP said “here’s some Vanco, we are not messing with this.” I took ten days of it and it was gone.
The last round was after my DRG Spinal Cord Stimulator Insertion. I had been tested pre-op and know that I had no active C diff infection. I warned all of my doctors, nurses (pre-and post-op), anesthesiologists, everybody that I was a HIGH-RISK C DIFF PATIENT WITH 4 PREVIOUS BOUTS IN THE PREVIOUS YEAR. NOT A SOUL TOOK PRECAUTIONS OR PASSED THE WORD TO THEIR CO-WORKERS.
I went home the next day after profusely complaining to the FLOOR NURSE.
Within 48 hours, I had C Diff signs and symptoms and within the next 24 hours I had the worst full-blown case of C diff I had ever had. I was literally crawling on the floor to the bathroom for three days. I called my doctor and they started me on vancomycin AGAIN.
I have never been referred to a GI SPECIALIST. I have never been referred to INFECTIOUS DISEASE SPECIALIST. I SIMPLY DO THE RESEARCH AND MAKE SURE I’M OKAY.

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Sorry you are going through all this. This is such a viscous cycle. I did have two bouts of c Diff and now 6 months later and still have my ups and downs and nowhere near normal. I think I am still recovering and I keep changing diets. I am currently working with a nutritionist as they do help tremendously with diet. Food is key to a good recovery and to take care of your gut and feed those good bacteria. Are you taking S Boulardii with your antibiotic? And any other probiotic? Heard bone broth speed up recovery and help heal your gut. Keep me posted and hope this would be the last one for you.

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Wow. You re’s is like the horror story that c diff can be. I’m so sorry. I didn’t want to be overly critical of MY doctor, but I felt they ignored me and I paid the price. It’s amazing, you can google “high” risk patients/situations and yet, info is not given to the patient (in my situation). The roller coaster of antibiotics (not to mention the cost) is so hard on our bodies. I think members will respond to your story and share their stories/advice with you. I did file a formal compliant, which went to the federal Medicare review board. I did this after the Risk Management Department in the hospital denied any responsibility. Not for any other reason then to insure others are treated timely and respectfully. Sometimes, you have to make a fuss to make a change. Keep digging and don’t let your medical advisors minimize your situation. V

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@mhi

Sorry you are going through all this. This is such a viscous cycle. I did have two bouts of c Diff and now 6 months later and still have my ups and downs and nowhere near normal. I think I am still recovering and I keep changing diets. I am currently working with a nutritionist as they do help tremendously with diet. Food is key to a good recovery and to take care of your gut and feed those good bacteria. Are you taking S Boulardii with your antibiotic? And any other probiotic? Heard bone broth speed up recovery and help heal your gut. Keep me posted and hope this would be the last one for you.

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I’m not active c diff at this time. I’m just lost as to what I’m supposed to do now. What happens if I get sick and need an antibiotic? I’m terrified to go on anything!

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@faithwalker007

I’m not active c diff at this time. I’m just lost as to what I’m supposed to do now. What happens if I get sick and need an antibiotic? I’m terrified to go on anything!

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Maybe consider taking herbal antibiotic if you really need any. Naturopathic doctors are good with those. Of Course depending on what the infection is.

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@mhi

Maybe consider taking herbal antibiotic if you really need any. Naturopathic doctors are good with those. Of Course depending on what the infection is.

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Sounds like a good idea. But again, I live in rural Wyoming. I don’t even have a Walmart. Where am I supposed to find a naturopathic doctor? Who or what is a naturopathic doctor? I don’t even remember seeing those in Waco, TX. We had naturopathic remedies and stores but not doctors.

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I suggest you google and see the closest one that can offer like virtual visit and maybe if you are in need for an antibiotic you might want to explore other options like herbal antimicrobial maybe it can be shipped to you. Read about naturopathic I know I worked with one and I got a good support while fighting c Diff in addition to my antibiotic therapy. Please keep me posted with what you find!

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@faithwalker007

Thanks virgo52, as far as backstory, it’s pretty straightforward. I contracted my first case from the community, either from Deadwood at one of the casinos, or from church from a fellow member who’s son had it in Denver Children’s Hospital at the time (he was a cancer patient- fully recovered, by the way.) I proceeded to go to the doctor for three weeks and was told I had the stomach flu. Finally ended up in the hospital, severely dehydrated, dangerously low BP, low BS, and tested positive for C Diff and with infectious colitis.
I was started on Flagyl, and Doxycycline, and something else, and continued to dehydrate. It’s a blur, I’m just telling you what they told me. Because I’m epileptic, they had me pretty sedated. They were going to transfer me to Casper or Rapid City, but my bowels would not allow it. They switched me to IV Vancomycin and I began to improve. Another three or four days later, i was well enough to go home. I remained on Vancomycin for two more weeks.
Within four days, I was sick again. They started another course. 14 more days. I was okay until a few months later I received Clindamycin for a skin infection. Wham! The infectious colitis was back and I was tested. C diff was back. They tried metronidazole and the other meds. No luck. Back on Vancomycin it was. Two weeks. Knocked it out.
The next round was about two or three months later and I really don’t know if it was C diff or a stomach bug. All I know is I had severe diarrhea and my PCP said “here’s some Vanco, we are not messing with this.” I took ten days of it and it was gone.
The last round was after my DRG Spinal Cord Stimulator Insertion. I had been tested pre-op and know that I had no active C diff infection. I warned all of my doctors, nurses (pre-and post-op), anesthesiologists, everybody that I was a HIGH-RISK C DIFF PATIENT WITH 4 PREVIOUS BOUTS IN THE PREVIOUS YEAR. NOT A SOUL TOOK PRECAUTIONS OR PASSED THE WORD TO THEIR CO-WORKERS.
I went home the next day after profusely complaining to the FLOOR NURSE.
Within 48 hours, I had C Diff signs and symptoms and within the next 24 hours I had the worst full-blown case of C diff I had ever had. I was literally crawling on the floor to the bathroom for three days. I called my doctor and they started me on vancomycin AGAIN.
I have never been referred to a GI SPECIALIST. I have never been referred to INFECTIOUS DISEASE SPECIALIST. I SIMPLY DO THE RESEARCH AND MAKE SURE I’M OKAY.

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I pray you are doing much better by now. How did you come out with your DRG SCS Insertion? I had the trial Abbott Burst DR SCS, trying to decide whether or not to have the permanent one inserted, BOG DECISION! Good luck!

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@msgoose76

I pray you are doing much better by now. How did you come out with your DRG SCS Insertion? I had the trial Abbott Burst DR SCS, trying to decide whether or not to have the permanent one inserted, BOG DECISION! Good luck!

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I will not lie to you. It’s not nearly as good as the trial but I believe that is due to an arrogant, know it all, SOB of a neurosurgeon who didn’t listen to a word I said. He just wanted a profit of the lead he used, “the one he designed.”
If you have a neurosurgeon that uses the information obtained in the trial, inserts the correct lead or leads you need where you need them and you are PATIENT during the initial programming phase, it will benefit you.

Do not expect miracles. Expect treatment. Do not expect your pain to vanish, expect it to be managed like you are having done right now.

And communicate with your Abbott person. Build a relationship with whomever it is. He or she will be the most valuable person to you. Learn about your system inside and out, and you will benefit. Don’t and you won’t.

I will say this: if you don’t have a mental health counselor or psychiatrist to help you through your pain management especially if you are getting a SCS, find one. The emotional toll that enduring pain that warrants one is overloading on the psyche and it helps to vent to someone who knows nothing about you but words on a page. If you weren’t required to talk to one before your trial, stop now and see one. A SCS is not an easy thing to manage or live with.

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