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 ?

@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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I feel your pain. I to was put on clindamycin and contracted cdiff. I lost 22 pounds in 2 months was hospitalized over thanksgiving. I am on danactiv and havie been on vancomycin for a long time. I had in twice in two months. I too can not tell what to eat. Sometimes ok but meat seems to make it flare up. I was told about fecal transplant and I did research and have decided if not improving by January that is what I will do. Good luck to you.

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@serenityva

What foods do you eat with low fermentation diet? I am on second bout of C-Diff, hospitalized 4 days over Thanksgiving, (vancomycin), yesterday found out it is back..,so my husband and I will spend Christmas alone so No one else is exposed. Very frustrating, especially since I am going to Thailand for 2 weeks after New Year’s…I have disinfected all areas in house…any tips would be greatly appreciated.

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There are lists of Low FODMAPS online you can print, but typically grains, complex starches, sugars,,etc., take longer to digest. May be useful to follow a FODMAP diet, even for a couple of months to help your gut heal post infection. Search low FODMAP and a great deal of info will come up. Also You Tube. It has really made the difference for me.

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@guthealth

There are lists of Low FODMAPS online you can print, but typically grains, complex starches, sugars,,etc., take longer to digest. May be useful to follow a FODMAP diet, even for a couple of months to help your gut heal post infection. Search low FODMAP and a great deal of info will come up. Also You Tube. It has really made the difference for me.

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Thanks so much, trying not to be discouraged…will look the FODMAP up now😍

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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Best of luck. 😀

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@serenityva

What foods do you eat with low fermentation diet? I am on second bout of C-Diff, hospitalized 4 days over Thanksgiving, (vancomycin), yesterday found out it is back..,so my husband and I will spend Christmas alone so No one else is exposed. Very frustrating, especially since I am going to Thailand for 2 weeks after New Year’s…I have disinfected all areas in house…any tips would be greatly appreciated.

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@serenityva C.diff is the most difficult thing I've ever dealt with. I've had 4 bouts of it and have taken Flagyl, 2 rounds of Vancomycin and finally the expensive med Fidaxamicin (Dificid). My first bout was in April and I went for 10 days thinking I had E.coli from romaine lettuce before the test came back positive for C.diff from the Clindamycin I had taken earlier. I finished the last med on Oct. 26th. Two months is the longest I've gone since contracting the dreadful C.diff. I too have disinfected our entire house. Clorox wipes are in all the bathrooms and I've mixed bleach with Simple Green and sprayed down so many things. Hand washing is so important and hand sanitizers do nothing to kill the C.diff spores. You mentioned you and your husband will be alone for Christmas. I was around my family during all 4 bouts of C.diff. None of my family have been infected. To be extra cautious, I never used our guest bathroom while I was sick. And we still wiped it down with Clorox. If your family members are healthy, my doctors said they had nothing to worry about. From everything I've read, our percentages of getting C.diff relapses get higher with every occurrence. So I'm very thankful that I've gone almost two months now without a relapse. I've been faithful taking the probiotic Florastor and hand washing. I will go after the first of the year for a colonoscopy. I'm actually concerned about that after everything I've been through.

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@pines

@serenityva C.diff is the most difficult thing I've ever dealt with. I've had 4 bouts of it and have taken Flagyl, 2 rounds of Vancomycin and finally the expensive med Fidaxamicin (Dificid). My first bout was in April and I went for 10 days thinking I had E.coli from romaine lettuce before the test came back positive for C.diff from the Clindamycin I had taken earlier. I finished the last med on Oct. 26th. Two months is the longest I've gone since contracting the dreadful C.diff. I too have disinfected our entire house. Clorox wipes are in all the bathrooms and I've mixed bleach with Simple Green and sprayed down so many things. Hand washing is so important and hand sanitizers do nothing to kill the C.diff spores. You mentioned you and your husband will be alone for Christmas. I was around my family during all 4 bouts of C.diff. None of my family have been infected. To be extra cautious, I never used our guest bathroom while I was sick. And we still wiped it down with Clorox. If your family members are healthy, my doctors said they had nothing to worry about. From everything I've read, our percentages of getting C.diff relapses get higher with every occurrence. So I'm very thankful that I've gone almost two months now without a relapse. I've been faithful taking the probiotic Florastor and hand washing. I will go after the first of the year for a colonoscopy. I'm actually concerned about that after everything I've been through.

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Pines@pines, thanks for the encouragement…one of my children said they are coming anyway since they are all healthy, and I only use bathroom hooked to our bedroom. I just remembered I was on clindamysin in October which might be why I came down with first bout in November. Terrified to think of dealing with this over and over…hope all goes well with colonoscopy.

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@serenityva

Pines@pines, thanks for the encouragement…one of my children said they are coming anyway since they are all healthy, and I only use bathroom hooked to our bedroom. I just remembered I was on clindamysin in October which might be why I came down with first bout in November. Terrified to think of dealing with this over and over…hope all goes well with colonoscopy.

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@serenityva Yes, clindamycin is the #1 antibiotic causing C.diff. I know many of the others can and do bring it on, but in all that I have read clindaymcin is at the top of the list. I'm happy to hear you still have family coming for the holidays. If you read up on C.diff, you will see that you can not get the spores from hugging and touching your family and friends. The key is hand washing and keeping your bathrooms germ free, or spore free in the case of C.diff. Those spores can live for up to 5 months outside the body. I even used Clorox wipes and wiped down light switches and spray cans. Add some bleach to all your cleaners. Are you still taking vancomycin? I took it twice. The first time it was for 10 days, the last time it was the pulse and taper and I took it for 5 weeks. I was good for 3 weeks after taking it before I relapsed. The fidaximicin (Dificid) seems to be working. It was very expensive. Almost $5,000 for 20 pills. My insurance would not approve it until I had already tried Vanco. If I have any more relapses, I'm doing the fecal transplant. I'm keeping my fingers crossed and pray a lot. 🙂 Enjoy your Christmas and I wish you a healthy 2019.

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@bluebanana

I'm suffered for 7 days with what I thought was a bad case of the stomach flu until I went to my family doctor and they requested a stool sample and found from that that I had c-diff I believe this is the sickest I've ever been in my entire life

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@bluebanana How are you feeling? And what RX are you on? It took me three different RX's and 4 bouts of C.diff before one seems to be working. I took the last fidaximicin (Dificid) on Oct. 26th. My first C.diff episode was in April. And like you, I had never been so sick. The key is education so try to google and read up on things to do and what kills C.diff spores. Hand sanitizers will not kill the spores. It's important to use bleach and clorox wipes. I've never washed my hands as much. Hope you are feeling better.

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@pines

@bluebanana How are you feeling? And what RX are you on? It took me three different RX's and 4 bouts of C.diff before one seems to be working. I took the last fidaximicin (Dificid) on Oct. 26th. My first C.diff episode was in April. And like you, I had never been so sick. The key is education so try to google and read up on things to do and what kills C.diff spores. Hand sanitizers will not kill the spores. It's important to use bleach and clorox wipes. I've never washed my hands as much. Hope you are feeling better.

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I am feeling discouraged. I have been on a taper dose of vancomycin for over a months and a half. I start to feel better and then my stomach starts going crazy. I find I can not eat meat except chicken or fish. I am lactose intolerant. Can you share your food choices. I have read so much and tried to watch what I eat but nothing seems to help. Did this medication seem to be the one that helped or has it been long enough to say one way or the other. I have looked into the fecal transplant because I can not gain any weight and it has really taken a tole on my life. I am happy for you that you are getting better. I think clindamycin should have a warning due to cdiff. I work in a pharmacy and I talk to the doctors a lot and they say it should only be used as a last resort and cautiously. Thanks for listening. Merry Christmas. May the new year be better🙏🏻

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@losthope

I am feeling discouraged. I have been on a taper dose of vancomycin for over a months and a half. I start to feel better and then my stomach starts going crazy. I find I can not eat meat except chicken or fish. I am lactose intolerant. Can you share your food choices. I have read so much and tried to watch what I eat but nothing seems to help. Did this medication seem to be the one that helped or has it been long enough to say one way or the other. I have looked into the fecal transplant because I can not gain any weight and it has really taken a tole on my life. I am happy for you that you are getting better. I think clindamycin should have a warning due to cdiff. I work in a pharmacy and I talk to the doctors a lot and they say it should only be used as a last resort and cautiously. Thanks for listening. Merry Christmas. May the new year be better🙏🏻

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@losthope, I know exactly how discouraged this is. I also did the pulse and taper dose of Vanco. I was good for three weeks after going off of it. And then in October I relapsed with my 4th bout of C.diff. I was so depressed and got so sick with the 4th bout. I lost 10 pounds the first two weeks. I then convinced my insurance to approve fidaxamicin (Dificid). It's ONLY used to kill C.diff spores and does not kill the good bacteria. I have another friend who was given this after her second bout of C.diff. She was given Clindamycin by her dentist. I was given it for my 4th sinus infection. You might want to ask your doctor about fidaxamicin. It's really pricey. I think 20 pills was almost $5,000. But I've also found places that it's less expensive depending what pharmacy you use. I've also decided that I will do the fecal transplant if I have another relapse. I've looked in to Open Biome where they have the pill form. Thirty capsules are $635. It is so much less invasive. I also need to have a colonoscopy after the first of the year. And they also do the FMT using that approach. I took the last fidaxamicin on October 26th so I'm just a couple months short of two months being C.diff free. I knock on wood every time I say that. I really haven't changed my diet. I'm faithful at taking the probiotic Florastor which my gastroenterologist suggested. It's not affected by the acid in our stomach and will go directly to the colon to work on the C.diff spores that line our colons. And I'm sure you're taking all the precautions with hand washing and using bleach or Clorox wipes on everything. Keep us posted how you're doing. Wishing you well.

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@pines

@bluebanana How are you feeling? And what RX are you on? It took me three different RX's and 4 bouts of C.diff before one seems to be working. I took the last fidaximicin (Dificid) on Oct. 26th. My first C.diff episode was in April. And like you, I had never been so sick. The key is education so try to google and read up on things to do and what kills C.diff spores. Hand sanitizers will not kill the spores. It's important to use bleach and clorox wipes. I've never washed my hands as much. Hope you are feeling better.

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I am going to try the Florastor. I have been taking probiotics and drinking kiefer I still am on Vanco but getting nervous because my taper is almost done. If I eat meat my colon has spasms and I begin going to the bathroom again. I have not had diarrhea but frequently go to the bathroom. I have to use tucks because I go so often. Did you have side affects from the Florastor or the dificid? Sorry forgot to ask how are you doing? I didn’t mean to go on about myself. I am grateful I have someone to talk to who understands how much this thing changes your life and how frustrating it is to not feel like it will ever end. I hope you had a great Christmas and hope theNew Year is a great one.

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@losthope

I am going to try the Florastor. I have been taking probiotics and drinking kiefer I still am on Vanco but getting nervous because my taper is almost done. If I eat meat my colon has spasms and I begin going to the bathroom again. I have not had diarrhea but frequently go to the bathroom. I have to use tucks because I go so often. Did you have side affects from the Florastor or the dificid? Sorry forgot to ask how are you doing? I didn’t mean to go on about myself. I am grateful I have someone to talk to who understands how much this thing changes your life and how frustrating it is to not feel like it will ever end. I hope you had a great Christmas and hope theNew Year is a great one.

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@losthope I didn't have any side affects with Dificid or Florastor. I have a lot of gas when I first get up in the morning but I'm not sure if that is from the probiotic. Yesterday marked two months since I took the last Dificid. This is the longest I've gone without a C.diff episode since my first one this past April. When I finished the Vanco taper, I was good for three weeks before the 4th bout of C.diff hit. I understand completely what you are going through. It's like we live it fear with "if and when" it will hit again. You feel trapped in your own home. And unless you've had it, people don't really understand. You can say it's like having the flu, but it really isn't. It's something I wouldn't wish on my worst enemy. And to think I got it from taking Clindamycin. Something that's suppose to make you better. I, like you, was so nervous when I ended the Vanco taper. I remember we had relatives visiting us from MN over Labor Day weekend and I was so thankful that my last pill was on Labor Day. I knew I would be okay while the relatives were here. Having C.diff makes you worry about planning anything where you may have to leave your home. Please keep us updated how you're doing.

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@pines

@losthope I didn't have any side affects with Dificid or Florastor. I have a lot of gas when I first get up in the morning but I'm not sure if that is from the probiotic. Yesterday marked two months since I took the last Dificid. This is the longest I've gone without a C.diff episode since my first one this past April. When I finished the Vanco taper, I was good for three weeks before the 4th bout of C.diff hit. I understand completely what you are going through. It's like we live it fear with "if and when" it will hit again. You feel trapped in your own home. And unless you've had it, people don't really understand. You can say it's like having the flu, but it really isn't. It's something I wouldn't wish on my worst enemy. And to think I got it from taking Clindamycin. Something that's suppose to make you better. I, like you, was so nervous when I ended the Vanco taper. I remember we had relatives visiting us from MN over Labor Day weekend and I was so thankful that my last pill was on Labor Day. I knew I would be okay while the relatives were here. Having C.diff makes you worry about planning anything where you may have to leave your home. Please keep us updated how you're doing.

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@pines, with C-Diff are bowels green? Mine are…
Am on 2nd tolume round with Vancomycin, will wind it up while I am out if the country, hoping I have at least a week or two before it rears it’s ugly head again…in time to get back home.

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@serenityva

@pines, with C-Diff are bowels green? Mine are…
Am on 2nd tolume round with Vancomycin, will wind it up while I am out if the country, hoping I have at least a week or two before it rears it’s ugly head again…in time to get back home.

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@serenityva I recall you were planning a trip to Thailand after Christmas. It would be nice if your doctor would give you enough Vanco so you could stay on that during your trip. I did the Vanco taper so at the end of the 5 weeks, I was only taking one every other day. But it kept the C.diff spores at bay for three weeks after I finished it. My bowel movements (BM's) were never green as you said yours are. During a couple of the bouts that were most severe, I started having a lot of puss like BM's that were more of an orange in color. You might want to check with your doctor.

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@serenityva

@pines, with C-Diff are bowels green? Mine are…
Am on 2nd tolume round with Vancomycin, will wind it up while I am out if the country, hoping I have at least a week or two before it rears it’s ugly head again…in time to get back home.

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No green stool just small and narrow. I find I just can’t wipe myself enough gel like leaking. Going to talk to GI. The smell has gone but still a lot of bowel movements

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