C. difficile -are your guts ever normal again ?

Posted by sue6408 @sue6408, Sun, Jan 27 12:57pm

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 ?

@losthope

Mine was caused by clindamycin and long term use of Prevacid. Ppl drugs not good for anyone who has had or has cdiff

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I take Nexium because of the GERD and Barrettes and worry about that too but the doc said I have to take it so I cut back to a half and watch what I eat. No winning. The constant gut problems ruin your life. If I didn't have the Barettes I wouldn't take it. Now have a brain tumor to deal with,ugh

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@sarasally2

it has been five years since I had a fecal transplant after having cdiff four times and my gut has never been the same, daily bloated and dirarrea. I have taken the florastor all these years and avoided antibiotics til this week and now I have to take them and am scared the cdiff will come back again so doubled the florastor. I have SIBO, diverticulitis, hiatal hernia, GERD and Barretts. The cod put me on a diet of eating just about nothing but it makes no difference.

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They wanted to do that this past time for me, if the vanco didn't straighten it out and thank god I didn't have too but I did 4 weeks of vanco meds before it started straightening itself out. That was my choice if the insurance didn't approve some med that begins with D. Now I am really glad I didn't do it. They said it would be fine

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@danab

Well one i was on was Bactrim for a lung infection but due to blood count issues they are switching me to a once a month inhalat called Pentamidine. It attacks the virus directly in the lungs. So it won't affect the blood stream. This is preventive but also should not cause cdif. I haven't started yet but we will see.

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I think we should start a list with do's and don't takes of antibiotics …. that way everyone knows the problem meds

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LOW RISK ANTIBIOTICS according to my Gastro doctor, Carl Crawford who is at NY Presbyterian, listed as #1 hospital in NYC so I am hoping he is right.

Here is the list of low risk antibiotics

doxycycline
tetracycline
bactrim
ezithromycin

I posted his list of HIGH RISK ANTIBIOTICS yesterday.

There is also some risk, he said for those who have had an initial episode of C. Diff of taking any of the following two classes of over the counter drugs for acid stomach, gas, heart burn etc.

Proton Pump Inhibitors (like Omeprazole)
H2 blockers (like Zantac)

The Gastro doctor said if you have to take one of these two antacid type drugs, well then you have to take it but avoid them if you can. Also avoid Advil /Ibuprofen because it messes with the biome. None of these are of course as serious as taking an antibiotic.

I am having some success controlling my gas with peppermint tea, Tums, and eating coconut oil when the pain comes on. All of those seem to soothe the stomach. I am terrified of messing with my intestinal biome flora with anything that might disturb it. I guess we all are.

When a doctor prescribes me any drug, I immediately google the drug's name and C.Diff. I did that when i was prescribed Zantac and saw that a Mayo study had just come out showing evidence that taking Zantac may increase risk of C. Diff relapse. I refused to take it.

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@sarasally2

it has been five years since I had a fecal transplant after having cdiff four times and my gut has never been the same, daily bloated and dirarrea. I have taken the florastor all these years and avoided antibiotics til this week and now I have to take them and am scared the cdiff will come back again so doubled the florastor. I have SIBO, diverticulitis, hiatal hernia, GERD and Barretts. The cod put me on a diet of eating just about nothing but it makes no difference.

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@sarasally2 What antibiotic are you taking now? Hopefully you will be okay since it's been 5 years since your last Cdiff episode. Please let us know how you're doing.

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I took three days of Macrobid and am having anxiety attacks worried about it. Worried about the infection and worried about the antibiotic.

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@sarasally2

I took three days of Macrobid and am having anxiety attacks worried about it. Worried about the infection and worried about the antibiotic.

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I had c. Diff for 13 months. I am prone to UTI. Macrobid is safe. ( praise the Lord)

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@sarasally2

it has been five years since I had a fecal transplant after having cdiff four times and my gut has never been the same, daily bloated and dirarrea. I have taken the florastor all these years and avoided antibiotics til this week and now I have to take them and am scared the cdiff will come back again so doubled the florastor. I have SIBO, diverticulitis, hiatal hernia, GERD and Barretts. The cod put me on a diet of eating just about nothing but it makes no difference.

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Have you had a sucrose breath test . After the c.diff. I can no longer digest sucrose. I have to take the enzyme. This caused massive bloating. Table sugar is a a hidden ingredient in many foods.

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I had a problem with C. Diff a few years ago. It seemed every time I finished the medical treatments it would come back. They had me do Flagyl a few times and they had me try Vanco but it always came back. I ended up doing a natural treatment that I read about and I have been 3 years C. Diff free. This is what the article said to try and I followed it….. Primadophilus Optima by Nature's Way (contains 35 billion CFUs per capule) 1 capsule twice a day for 1 month then 1 capsule once a day for 2 more months, N-acetylcysteine (NAC) 600 mg 3 times a day between meals for 3 months, Deglycyrizinated Licorice (DGL) Chew 2 tablets (760 mg) 20 minutes before each meal for 3 months, Garlic Extract (I used Kyolic Reserve Aged Garlic Extract) 1 tablet (600 mg) twice a day with meals for 3 months. I have been c. dif free for 3 years. It may be worth a try for those of you that seem not to be able to shake it.

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@sue6408

I had c. Diff for 13 months. I am prone to UTI. Macrobid is safe. ( praise the Lord)

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thank you

Liked by sirgalahad

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@sue6408

I had c. Diff for 13 months. I am prone to UTI. Macrobid is safe. ( praise the Lord)

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Were you quarantined? What protocol did you use ((gloves, Clorox, own toilet, etc.)?

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@patts

Were you quarantined? What protocol did you use ((gloves, Clorox, own toilet, etc.)?

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yes, I was in the hospital four times in quarantine, they came in the room wearing gowns and masks and gloves, took them off before they went out otherwise no one in or out. My daughter cleaned the whole house down with bleach which I am highly allergic to but was in the hospital when she did it. She threw away curtains, drapes,etc Then they did the fecal transplant because nothing was working, was going to try a new drug, free from the company but I had the transplant instead. $11,000 in copays and I was never the same, sick everyday

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@sarasally2

yes, I was in the hospital four times in quarantine, they came in the room wearing gowns and masks and gloves, took them off before they went out otherwise no one in or out. My daughter cleaned the whole house down with bleach which I am highly allergic to but was in the hospital when she did it. She threw away curtains, drapes,etc Then they did the fecal transplant because nothing was working, was going to try a new drug, free from the company but I had the transplant instead. $11,000 in copays and I was never the same, sick everyday

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@sarasally2 I can sure relate except that I wasn't in the hospital during my 4 bouts of Cdiff in 2018. I've never gone through anything like it. I took Flagyl, Vancomycin twice and even did the pulse and taper for 6 weeks and finally Dificid worked for me. It's terribly expensive and I'm sure that's why the insurance doesn't cover it until I'd tried Vanco. My next alternative was going to be the FMT. All this from taking Clindamycin for a sinus infection. Every time I hear that someone I know is taking antibiotics, I cringe.

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@pines

@sarasally2 I can sure relate except that I wasn't in the hospital during my 4 bouts of Cdiff in 2018. I've never gone through anything like it. I took Flagyl, Vancomycin twice and even did the pulse and taper for 6 weeks and finally Dificid worked for me. It's terribly expensive and I'm sure that's why the insurance doesn't cover it until I'd tried Vanco. My next alternative was going to be the FMT. All this from taking Clindamycin for a sinus infection. Every time I hear that someone I know is taking antibiotics, I cringe.

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mine started from many antibiotics for a sinus infection five years ago and I recently had to take three days of an antibiotic and have been having panic attacks. I really didn't think I was going to make it. I managed to go five years without an antibiotic knowing one day I would have to. I have doubled florastor, flooded myself with water and prayed a lot. I have been dealing with a brain tumor but taking the antibiotic threw me over the brink. The fecal transplant wasn't bad but I have IBS, SIBO, diverticulitis and all kinds of gut issues

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I heard that it was reported in the New York Times that two people who were given fecal transplants died and so the FDA has cut back on the number it will allow — and if i understand it right, will only let you get one now if you are really at a terrible place. Have any of you heard this? Have any of you had a fecal transplant in last couple of months.

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