C. difficile – Are your guts ever normal again?
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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Yes, please do. I would be interested fo know.
For the UTI you should avoid an oral antibiotic and get the shots. Plain old, antibiotic shots like I got when I was a kid. This has been shown to avoid recurrent C. difficile infection because the anabiotic is not going through the intestinal track. As far as FMT goes, please review the warnings on the FDA website about the people who have been killed and whose lives have been greatly compromised as a result of one donor having monkeypox. Three people died right away and two others were very ill. FMT donors are people who are so desperate for money that they sell their poop. These people did not live healthy lives, and their choices are reflected in the quality of their Microbiome. This is a big business. One alternative to FMT is an infusion, called Zinplava. It works like Dificid in that it crippled toxin B and protects you while you immune system recovers. I had recurrent C. difficile in 1993 and almost died. Then, when my husband was terminally ill, they put him in a room where someone had a much more virulent version of C diff and I caught it. I tried everything for more than a year, and then found a doctor at Loyola University, who did not recommend FMT. He pointed out to me that, even though they screen for known pathogens, there are far more unknown pathogens out there. Every bad choice the donor made throughout his life is reflected in his Microbiome. Zinplava was cheaper than FMT and far safer. I recovered and was fine. I had a little IBS for about six months, but it resolved. You aren’t out of the woods because you get FMT. You can never take an antibiotic again for any reason that is orally administered. I took a mild antibiotic for 18 hours for a UTI, and suddenly i had symptoms. I was instructed to stop the antibiotic and take Dificid for one day at 12 hour dosing, then one tab the next day and wait. My body struggled but defeated the CDI. Do some research on the over-the-counter medication‘s that are damaging your micro biome almost as much as an antibiotic, things like antacids, ibuprofen, or other, NSAIDs, anti-depressants just to name a few. Ibuprofen is almost is damaging to the Microbiome as an antibiotic. I had no idea. But I’m glad I found out. I take a wide variety of probiotics, and after the initial bloating, I was greatly relieved and felt much better. I eat a high fiber diet. That is basically Mediterranean. It’s all organic and I never eat any meat, poultry, or eggs that have been treated with antibiotics. The probiotic foods I think are best are kimchi, Kiefer, yogurt, and sauerkraut. The best probiotic I have found is bio K plus extra with wellmune, 80 Billion. I also take two florastor capsules in the morning and two in the evening. And there is a very interesting scholarly article on nih.gov about how chocolate fights cholostridia in the immune system by suppressing it’s replication while at the same time feeding the really good bacteria that keep it in check.
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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1 ReactionQuote: 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.
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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1 ReactionIt's been almost five months since I got C-Diff from an antibiotic and still having a hard time. I've developed an itchy rash on my scalp that's now spreading to my stomach and lower back. My dermatologist wanted to give me steroids but I can't take them with my Glaucoma. I've tried several drug store products for for the itchiness and rash but nothing seems to help.
I also have waves of just feeling sick and weak during the day. I'm just not myself anymore. Am I not giving it enough time to heal? I'm just looking for some hope!
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1 ReactionWHAT ABOUT A STEROID SHAMPOO LIKE CLOBETASOL, NEED A SCRIPT.
ALSO FOR ITCHING GOOD OLD FASHIONED BENADRYL.
JUST A THOUGHT, FEEL BETTER. I ALSO AM GOING ON 3 MONTHS SINCE I GOT CDIFF, HAD A BOUT 20 YEARS AGO. SUPPOSEDLY IF THIS IS YOUR FIRST BOUT, THE ANTIBIOTIC MIGHT TAKE IT AWAY, HOWEVER FOR ME. I CAUGHT A BOUT OF IT 20 YEARS AGO. NOW DOCTORS TELL ME THAT SINCE THIS IS MY SECOND BOUT, THE TOXIN WILL ALWAYS COME BACK IF I NEED AN ANTIBIOTIC LETS SAY FOR PNEUMONIA. THEY TOLD ME SO EACH TIME, I NEED AN ANTIBIOTIC FOR SOMETHING ELSE. I MUST ALSO TAKE VANCOMYCIN BUT IN A LOWER DOSE WITH THE ANTIBIOTIC AND FOR 5 DAYS AFTER YOU FINISH THE OTHER ANTIBIOTIC TO HELP PREVENT THIS FROM ACTING UP.MANY SAY IT TAKES A LONG TIME , MORE SO IF YOU HAVE OTHER HEALTH ISSUES, GOT TO JUST DO ONE THING A DAY, AND THEN REST, FOR ME THE PAINS IN UPPER AND LOWER STOMACH, ARE HORRENDOUS. AND THE NAUSEA, BUT ZOFRAN HELPS THAT. THEY ALSO HAVE BENTYL FOR STOMACH CRAMPS, AND PROBIOTIC FLORASTER THERE ARE MANY MEDICAL REPORTS, THAT SAY IT HELPS TO TAKE EVERY DAY. HOWEVER ITS LIKE $40 A BOTTLE OF 100, AND YOU TAKE 2 A DAY, I JUST STARTED IT A WEEK AGO, BUT IT IS THE ONLY PROBIOTIC THAT HAS MEDICAL DOCUMENTATION ON IT HELPING CDIFF.
IM A RESPIRATORY THERAPIST, BUT THANK GOD I WORK REMOTELY. MY TOILET IS CLOSE. ITS A TERRIBLE BACTERIA TO HAVE. FEEL BETTER, KAREL
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3 ReactionsThank you for your response Karel. I got C-Diff from an antibiotic that I didn't think I needed but I trusted my doctor. I never knew you could get it from an antibiotic. I took a course of Vancomycin and then had a recurrence and was put on a taper. It hasn't come back and I pray that it never will! I hope in time I will improve. One day at a time. I pray for healing for you, Karel. Feel Better, Mary
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3 ReactionsYou probably have a fungal infection.
Are you on antibiotics for cdiff such as vancomycin?
I had the same condition but it was sores on my head, face, chest and back. The vancomycin was the cause, I was allergic and I itched like crazy.
I use dial soap, the yellow bar that’s antibacterial.
I was also prescribed metronidazole gel and tacrolimus ointment.
Cdiff makes you tired and nauseous besides, diarrhea and other symptoms.
I’m on a third round of antibiotics called difficid. My infectious disease doctor prescribed ondansetron for nausea.
If you are having these bad side effects please contact your infectious disease doctor or make an appointment with one.
I hope you feel better!
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3 ReactionsYou can also use a nizoral shampoo or CLN shampoo or sulfur 8 shampoo for your scalp.