1. < Infectious Diseases

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

Posted by Faithwalker007 (Renee) @faithwalker007, Feb 13, 2021

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.

Interested in more discussions like this? Go to the Infectious Diseases Support Group.

msgoose76 | @msgoose76 | Feb 15, 2021
In reply to @faithwalker007 "Thanks virgo52, as far as backstory, it’s pretty straightforward. I contracted my first case from the..." + (show)
@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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2 replies
Faithwalker007 (Renee) | @faithwalker007 | Feb 15, 2021
In reply to @msgoose76 "I pray you are doing much better by now. How did you come out with your..." + (show)
@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!

Jump to this post

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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1 reply
cece55 | @cece55 | Feb 15, 2021
In reply to @colleenyoung "Hi @faithwalker007, I added this discussion to the Digestive Health group as well as the Infectious..." + (show)
@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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Hello Colleen,

I'd like to comment on what I am doing as far as prevention for my episode of c-diff. Thank you for bringing me into the conversation. I had 10 days of Vanacomycin from my Mayo GI and was very nervous about a relapse. Mentally, I was a basket case. My GI was great and reassured me of the options that were out there, especially that Mayo was on the cutting edge of treatments for c-diff. He calmed me down. It has been two months since my diagnosis. I developed c-diff after taking Clindomycin. They need to take that drug off of the market.

I take two Florastor capsultes daily. One in the morning and one at night. I never miss. I also changed my diet. I eat totally dairy free and gluten free. I have found great substitutes for the foods that I used to eat in these categories. I also do not eat any processed foods to the best of my ability. Basically, I eat whole, fresh foods. I also have cut out sugar. Do I cheat? Yes. 🙂 Everyone needs a treat now and then but I really stick to this diet. It works for me.

I am praying that my episode was a one time occurrence for me. All my doctors are aware of the fact that I have had c-diff. I don't know what will happen if I need to go on an antibiotic. But I do know that the worry can be as bad as the infection so I am trying my best to just move forward and enjoy my life.

Blessings to all of you and stay safe,
CeCe 55

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1 reply
Erika | @erikas | Feb 15, 2021
In reply to @msgoose76 "I pray you are doing much better by now. How did you come out with your..." + (show)
@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!

Jump to this post

@msgoose76 Welcome to Mayo Clinic Connect, a place to give and get support.

You said that you are making a decision to have a Abbott Burst DR SCS. Is that for pain relief and if so, is your cause of pain?

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1 reply
ken82 | @ken82 | Feb 15, 2021
In reply to @faithwalker007 "I will not lie to you. It’s not nearly as good as the trial but I..." + (show)
@faithwalker007

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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@faithwalker007 After reading your posts through the last few months.. it has made me critically aware that Location, Location, Location is a real advantage not only in Real Estate but Medical Care.. The use of Technology brought to the front of our awareness during the Pandemic should become critical to those who live, by choice, in remote locations at advanced age....
The last appointment I had with my GI doc at Mayo MN was by phone ... and the next one will be that too... I have decent Medical Facilities here in Central Iowa.. but Mayo is just a 3 and a half hour drive away to the North.. Hearing Aids can be adjusted remotely now... so much is available through internet connections... Our connectivity is critical to our health these days... Ken

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msgoose76 | @msgoose76 | Feb 15, 2021
In reply to @erikas "@msgoose76 Welcome to Mayo Clinic Connect, a place to give and get support. You said that..." + (show)
@erikas

@msgoose76 Welcome to Mayo Clinic Connect, a place to give and get support.

You said that you are making a decision to have a Abbott Burst DR SCS. Is that for pain relief and if so, is your cause of pain?

Jump to this post

I have suffered with neuropathy for years, effects my lower back down to my feet, horrible pain. Have had 2 back surgeries, the first leaving me with a drop foot. My neuropathy effects my feet the most, lose of sensation in feet & legs. Making it difficult to feel my feet but yet they are in pain. Have also tried acupuncture, massages & physical therapy. I had the Abbott Burst trial 1/4/21, only helped about 40%. I just cannot go on living with pain & thought the permanent one may help more than the trial. I'm torn. Thanks

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virgo1952 | @virgo1952 | Feb 15, 2021

@ken82. Boy, you got that right. Having to travel to see a specialist and/or hospital becomes more difficult as we age. Decisions to live near medical facilities are important. We have been considering Sun City,Arizona (before and after the covid 19 is under control). Besides the weather and activities offered, the medical facilities and doctors are close and highly trained. I don’t want to pick a doctor and/or facility based on location instead of his/her expertise. virgo52

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woogie | @woogie | Feb 15, 2021
In reply to @faithwalker007 "Sounds like a good idea. But again, I live in rural Wyoming. I don’t even have..." + (show)
@faithwalker007

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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This is my own suggestion: There is a company called Nature's Sunshine Products, Inc. Spanish Fork, Utah 84660 . Their number is: 1-800-223-8225, http://www.naturesunshine.com I get natural cleaning products from this company. They have a wide variety of products. I have even heard of some of the things they sell from Dr. Oz. He didn't mention this company, just some of the products!
You many get some of the naturopathic remidies from them. I am sure you can. Woogie.

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minge | @minge | Sep 16, 2021
In reply to @virgo1952 "Hi Faithwalker007. Yeah. Getting C diff is not fun. Not sure of your c diff back..." + (show)
@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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what probotics are you using

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subie | @subie | Nov 21, 2021
In reply to @virgo1952 "Hi Faithwalker007. Yeah. Getting C diff is not fun. Not sure of your c diff back..." + (show)
@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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What probiotics do you tske

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