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 group.

@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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@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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@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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@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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@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?

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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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@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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@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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@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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@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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@subie

What probiotics do you tske

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I just take a generic probiotic. Walmart brand. I also drink Clearlax (Walmart) every am (powder) and midday I eat 4-6 fiber gummies for helping to creating bulk snd helping me regulate my bowel. It’s been a little over 2years since my surgery and I have to still make sure I have fiber, stay hydrated and exercise daily. Life in my “new” normal!

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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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What probotic do you take?

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Hello, Renee. I'm Barbara. May I share my experience of c. dif with you. It all seemed to have begun with UTIs treated with antibiotics to the point that after fosfomycin I developed c. dif. I did take vancomycin but it recurred. My urologist claimed that a pessary was not being changed often enough; urology had a protocol for once a month and the gynecologist's office for every 12 weeks. The gynecologist has agreed to change the pessary every six weeks, and the urologist to not treat me with antibiotics unless necessary. After getting my last booster I ended up in the ER a second time with severe stomach pain; I was diagnosed with diverticulitis. The same medicine, Dificid, was first choice and this time I spent the $l,200 with Medicare D to purchase that prescription. It worked very well; yesterday I saw the digestive health PA who gave me some diets to study and follow. I learned two things: that a trauma l center can get lab results on c. dif within an evening, and that one can have in place an application with Merck for complimentary purchase of Dificid. I was advised by the digestive health PA that next time I require an antibiotic to ask the urologist to prescribe vancomycin along with the antibiotic for a UTI. I hope some part of this labored story may be relevant and helpful to you. It was a very challenging time, and I lost 15 pounds in the process. I hope we both can avoid a recurrence of it!

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I read your comments with interest. I'm Jerry. I have a long history of trying to kill a UTI including hospitalizations, intravenous in rehab and at home etc. I am resistant to most antibiotics but bactrim which at full strength made me sick (off to the ER). Anyway I have been on a low dose of bactrim for months which I seem to tolerate. Anyway now comes C Diff most likely because of the long term use of an antibiotic which killed all the good stuff and allowed C Diff to become an issue. I have been prescribed vancomycin which I haven't taken yet.
Do I understand that you will take vancomycin along with a UTI antibotic at the same time? This seems almost contradictory. Please let me know if my understanding is correct. many thanks

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