C. difficile – Are your guts ever normal again?

Posted by sue6408 @sue6408, Jan 27, 2019

Does anyone know any body that has recovered from c.diff (guts back to pre-c.diff status ) . I have been negative for a year and still have bloating every time I eat anything and sporadic diarrhea. I need maternity clothing to eat and be comfortable. I have 0 appetite since I was initially infected.I am on creon 36,000 . this helps some what with bloating,I take papya&pineapple enzymes not helping, and floraster 2xday not sure about that.I have tried the FODMAP diet, I avoid many foods on that diet. I am seeing an RD, just finished an elimination diet with her. If I eat I bloat there for I am. Bottom line...are my guts ruined forever ?

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@vic83

Thank you again for your replies.
I sympathize with your situation. That is most difficult. I have read about such cases and have been terrorized.
I only had a HUGE DIARRHEA, went to the hospital 3 days later and spent a week in a private room overlooking the Gulf of Mexico. I thought "And Medicare pays for this? They did and I have very good Medigap insurance also.

I know about fecal transplant. One needs a close relative???
I am wondering if I had a different strain of C-diff.-perhaps weaker than today - so the ten days of Vancomycin did the trick, and I had no reoccurrences.
They now talk about how certain infections are more resistant to antibiotics because Doctors prescribed them unnecessarily. (How many people got it from Dentist prescription of antibiotics!!!!- My dentist sent me flowers after).
But I have googled and googled and not found any reporting on probability of having a C-diff outbreak when taking an antibiotic many years after the last outbreak. One would think someone is collecting such data. A life without antibiotics could be a problem. Of course, I am now almost 12 years older and have lung cancer which means my immune system is also weaker. So now my risk is greater.

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At one time is a company open biome used to allow people who had suffered C. difficile infection’s to bank their stool with open biome, so that they could receive their own healthy stool in FMT. The next best thing is to use a close blood relative, preferably one who lives with you, because you know their health habits, their standard of living, and any health problems they may have. You share their genes. The chance of successful FMT is much greater. However, open biome decided that this was no longer a practice that was economically sensible for them. It was far more efficient to use donors, even though that was far more dangerous to the recipient. If I had to have FMT because Zinplava failed, I would use my daughter a healthy 42-year-old whose grandparents on both sides lived into their 90s. She also eats all organic and has made responsible life choices. Interestingly, since open biome discontinued, their practice of stool banking and allowing family members to be their stool donor, FMT is often performed at home as a do it yourself procedure. It’s an enema, which is not as effective as doing it via colonoscopy, but it is reportedly very successful. There are apparently a lot of videos out there that explain how to do FMT at home. I haven’t looked at them yet because I am hoping Zinplava works for me again. It’s been a little over two weeks and so far so good. My recurrence was the result of my dentist, using an antiseptic to fill the canal. After a root canal and to control the swelling, he gave me a steroid. Avoid steroids they suppress your immune system. Between the two of them I was back in the soup of CDI.

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@sarah2324

At one time is a company open biome used to allow people who had suffered C. difficile infection’s to bank their stool with open biome, so that they could receive their own healthy stool in FMT. The next best thing is to use a close blood relative, preferably one who lives with you, because you know their health habits, their standard of living, and any health problems they may have. You share their genes. The chance of successful FMT is much greater. However, open biome decided that this was no longer a practice that was economically sensible for them. It was far more efficient to use donors, even though that was far more dangerous to the recipient. If I had to have FMT because Zinplava failed, I would use my daughter a healthy 42-year-old whose grandparents on both sides lived into their 90s. She also eats all organic and has made responsible life choices. Interestingly, since open biome discontinued, their practice of stool banking and allowing family members to be their stool donor, FMT is often performed at home as a do it yourself procedure. It’s an enema, which is not as effective as doing it via colonoscopy, but it is reportedly very successful. There are apparently a lot of videos out there that explain how to do FMT at home. I haven’t looked at them yet because I am hoping Zinplava works for me again. It’s been a little over two weeks and so far so good. My recurrence was the result of my dentist, using an antiseptic to fill the canal. After a root canal and to control the swelling, he gave me a steroid. Avoid steroids they suppress your immune system. Between the two of them I was back in the soup of CDI.

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Quote: My recurrence was the result of my dentist, using an antiseptic to fill the canal. After a root canal and to control the swelling, he gave me a steroid. Avoid steroids they suppress your immune system. Between the two of them I was back in the soup of CDI.

Oh no! What was wrong with frozen peas on cheek? Was he an Endodontist? I have had several root canals and never given steroids.
I do have a twin brother I could call on. I can't imagine implanting it at home!

Didn't know about steroids. And I just started a 6-week dose of Prednisone for severe lung breathing problem. And I have to take it with Bactrim (which is an antibiotic much less risky for C-diff) to avoid fungal lung infection that could be caused by Prednisone.
I just finished 12 days ago a ten-day course of Doxycycline for potential lung infection. So far so good. It is not one of the top five offenders but still a broad-spectrum antibiotic.
I already have lung cancer requiring ongoing treatments, so can't have more problems in lungs. I have to take medication when needed.

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@vic83

Quote: My recurrence was the result of my dentist, using an antiseptic to fill the canal. After a root canal and to control the swelling, he gave me a steroid. Avoid steroids they suppress your immune system. Between the two of them I was back in the soup of CDI.

Oh no! What was wrong with frozen peas on cheek? Was he an Endodontist? I have had several root canals and never given steroids.
I do have a twin brother I could call on. I can't imagine implanting it at home!

Didn't know about steroids. And I just started a 6-week dose of Prednisone for severe lung breathing problem. And I have to take it with Bactrim (which is an antibiotic much less risky for C-diff) to avoid fungal lung infection that could be caused by Prednisone.
I just finished 12 days ago a ten-day course of Doxycycline for potential lung infection. So far so good. It is not one of the top five offenders but still a broad-spectrum antibiotic.
I already have lung cancer requiring ongoing treatments, so can't have more problems in lungs. I have to take medication when needed.

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Your situation is a lot more complicated than mine. I got a broad-spectrum anabiotic in 1993 for a sinus infection. I didn’t realize until I was in the emergency room on Thanksgiving night that the diarrhea was an infection. I didn’t lose my colon and I didn’t die. Back then the infection was not as hyper virulent as the current version. It did take seven months to resolve on vancomycin though, and I had to leave law school for a term to lower my stress. In 1994 I didn’t know how vulnerable I was and I was routinely given antibiotics for various infections. I also used ibuprofen as a painkiller, and at one time took an SSRI antidepressant. I didn’t realize until recently that those were damaging. I was also kind of hooked on diet soda. That’s bad for the Microbiome. I contracted a hypervigilant version of CDI when my husband was in the hospital for end-of-life care. They put him in a room where someone had this infection and at that time I didn’t realize that hand sanitizer wouldn’t kill it and that it was some thing you ingested. I brought a sandwich to encourage my husband to eat. And then I had a much more complicated problem. It didn’t resolve for 14 months and I ended up doing a lot of research online for methods for a resolving this. I found a doctor after listening to a panel discussion on this infection on a website called contagion live. They were talking about treatment options, including FMT. A new infusion called bezlotoxumab was getting good results. It is made by Merck pharmaceuticals and it is called Zinplava. It worked for me. It took a long time for the IBS to go away, but it did. I told the endodontist that I could not take antibiotics so he did not prescribe them. He prescribed ibuprofen and a low-dose steroid to reduce swelling. They both worked well, but they suppressed my immune system. So I set up another infusion after recovering on Dificid which resolved my symptoms and gave my microbiome several weeks to recover. I stopped the Dificid after the infusion and except for a little scare, the infusion is holding up. It’s fully active for 19 days and then fades. It does what Dificid does, cripples toxin B. It doesn’t rebuild the immune system. So I’m working on that with probiotics, a vegetable intensive diet, no artificial anything, no pain killers. I just found a doctor in Chicago who is researching microbiome rebuilding. Also a new vaccine is in stage 2 clinical trials for CDI. And rather than FMT, there are trials of propagating, good bacteria outside of the human micro biome. They extract and isolate the good bacteria and then replicate it. So what you get aren’t the bad habits/lifestyle of an impoverished FMT donor, you just get the good bacteria in as diverse a colony as they can provide. I’m interested in that as a treatment option and sign me up for the vaccination. I am a very healthy person except for this infection. I am almost 70. I was overweight, but decided to fix that by starting a walking program. It worked. I joined a nice gym and work out with a personal trainer twice a week. I can do 20 push-ups and dead lift 100 pounds. I cycle, swim, hike and play endless hours of pickleball, usually without injury. After reading your challenges, I know my life is truly blessed, and I will pray for you. Hang in there. The human body is pretty amazing. Do you have 100% got this

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IHello,
I just had a fecal transplant and it was not successful. They didn't tell me that I had to hold the liquid in for 12 hours, so all the liquid came out when I went to the bathroom and when I got dressed to come home. I am 75 yrs. old and have had this on and off for 7 months. Have tried Vancomycin and Dificid. Didn't work. I would suggest the transplant, but make sure all
info is given to you. Also, my Gastroenterologist nicked his finger while in the process. Yikes!!. I will try again using another Doctor.

I

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I had C-diff about 10 years ago due to an antibiotic that was prescribed to treat an infection. I suffered for about a month taking several different antibiotics for the C-diff. None worked. I finally landed in ICU where they gave me the "big guns" antibiotic and started to recover the next day. I recovered fairly fast and have never had another bout with C-diff. My gastrointestinal doctor suggested I take ALIGN probiotic daily (sold at Costco and we buy it when it is on sale) and at the beginning of my recovery I drank a lot of Kefir and ate a lot of yogurt. To this day, I continue to take ALIGN daily.
Everyone is different, but thankfully this worked for me.

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