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 ?

@annapocono

@nettecoo, @sandyabbey @pines @ngorma25 I am sorry to hear of two cases of C diff in one family. Something we all dread. I have been super super concerned about infecting others especially my kids and grandkids and getting reinfected myself. I finally got appointments with an infectious disease specialist and a GI doctor who specialises in C. Diff. I asked a lot of questions about contagion. Here is what they both independently told me:
1. I am only contagious when I have active diarrhea. If i am colonized but do not have active diarrhea, I am not contagious.
2. As for my apartment and the spores lingering on counters etc. They said give it all a good cleaning, especially the toilet and surrounds, with a product that specifically works against C Diff (the K list at EPA website tells you which they are) , and then it is okay for any one to come to may apartment unless they are immune compromised. My little grandchildren, even the baby , are fine, they said.
3. The infectious disease expert said that C. Diff spores are spread all around and that the vast majority of people are not immune compromised and so are not made sick by them.

As for your question about whether we can get C Diff again without even taking an antibiotic –the doctors thought i probably would not get it again unless I took an antibiotic but they emphasized that I have underlying health issue (two markers in my blood that makes me somewhat immune compromised) . That made me wonder if maybe i could independent of taking an antibiotic. I have come to understand that it is really important whether or not there is some underlying condition that increases risk. I supposedly have that.

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@annapocono Thank you very much for this helpful information. I have not been to an infectious disease doctor so your experience really helps!!!

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@annapocono

@lorirenee1 Thank you for your post. Could you tell us the logic of why fresh papa and bone broth are so good for the colon; also who suggested this combo? I am working on my colon and it has gotten better recently and now i am wondering if that is because of the bone broth I drank for four days two weeks ago. what i find has really helped my gas is peppermint tea. I really encourage people to try it.

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I learned about Papaya because my mother's Filipino nurse was my mom's caregiver. My mom was wheelchair bound, and was always constipated due to being in a chair all the time. I think it was part of Filipino culture, but the nurse gave my mom papaya on a daily basis, and all her colon problems disappeared. My mom had severe constipation for months, but it all cleared with papaya. The bone broth is from my own research from a health problem I have. The doctor thought that perhaps I had an autoimmune problem, and I started researching strengthening the immune system. Within that study, I learned about the use of bone broth. It appealed to me greatly, because I learned that it was very good for leaky gut. One of my health issues was diarrhea, so I started taking it both for strengthening my immunity and stomach problems. It cleared up stomach problems really well. I never took both of these together. I mostly just use bone broth. I find it fabulous.

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@lorirenee1 Thank you for your detailed response. I will remember the papaya. I too have a problem with immunity (I have a mild case of rheumatoid arthritis and also MGUS which apparently also weakens your immune system). So I am curious what besides bone broth you use to strengthen your immunity. And if there is some particularly good website you use. I have been making bone broth too though of course it is hard to know what is helping but my colon is definitely improving. I find peppermint tea very helpful in calming maybe it is my stomach.

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What I mostly do is eat healthy and drink a lot of organic juices. I eat beets and drink organic beet juice all the time, I drink the brand Smart Juice Organic Pomegranate Juice. So delicious. Like dessert. No concentrates. Smart Juice also makes a Super Veggie Juice that is wonderful. I eat mostly chicken and fish. Little red meat. Lots of leafy greens and veggies in general. Only an occasional sweet, and then I dont even like it much. Don't eat fried food. I take Omega 3 Fatty Acid and Turmeric pills everyday. Drink green tea a lot, but I hate it. Can't stand the taste. Drink Kefir. I think that is what it is called. A natural probiotic. LIke a yogurt smoothie. Delicious and so healthy. Instead of taking probiotics. Also, sauerkraut, which is a natural probiotic. I dont use any special website. Lori Renee

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They kept testing me for c. diff also. I ended up having delayed gastric emptying. Food would sit in my stomach up to 4 hours sometimes 8 hrs. The food in my stomach that long was causing severe bloating. Simethicone helped some. I also take Creon but I had to take 3- 36000 pills. You may want to check how many you're supposed to take with each meal. Also try a good probiotic. Good luck

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@pines

@annapocono I really appreciate your post. You confirmed most of everything my GI told me last year. Another thing I've learned about Cdiff, after 4 bouts last year, is that it's made me paranoid. And I will do everything in my power not to ever take another antibiotic. I'm so susceptible to UTI's and I've even changed to a PH balanced soap that I use every single night. Those of us who have gone through Cdiff probably have the cleanest bathrooms in the neighborhood. 🙂

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@pines I got a UTI just when i went off vancomycin. i was terrified to take an antibiotic. But I had to. The urologist seemed on top of the C. diff relapse vulnerability. I took monurol (fosftomycin) and did not relapse. Then she put me on a program to prevent any future UTI. So here is that program.
!. One ellura tablet a day .Ellura is cranberry juice . It is expensive. About a dollar a day. I bought it on amazon because i couldn't get it fast it in drug stores here in NYC. Read the reviews on Amazon. Women raving about how effective it is in warding off UTIs. I asked the doctor why not just drink cranberry juice and she said it is not as effective as this tablet.
2. Put a small pea sized amount of estrogen vaginal cream into the vagina every night for 2 weeks at the start –and then 2 or 3 times per week for maintenance. I just saw the doctor today and she said i should do that forever going forward. I know estrogen taken orally can be dangerous over the long term so I asked about the cream and she said , it does not get into the system and therefore is safe. I am 75 so the safety issue might be different for a younger woman.

I am feeling optimistic i won't get another UTI. Good luck to you and I am hoping this passed on advice might be helpful for you too.

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@annapocono

@pines I got a UTI just when i went off vancomycin. i was terrified to take an antibiotic. But I had to. The urologist seemed on top of the C. diff relapse vulnerability. I took monurol (fosftomycin) and did not relapse. Then she put me on a program to prevent any future UTI. So here is that program.
!. One ellura tablet a day .Ellura is cranberry juice . It is expensive. About a dollar a day. I bought it on amazon because i couldn't get it fast it in drug stores here in NYC. Read the reviews on Amazon. Women raving about how effective it is in warding off UTIs. I asked the doctor why not just drink cranberry juice and she said it is not as effective as this tablet.
2. Put a small pea sized amount of estrogen vaginal cream into the vagina every night for 2 weeks at the start –and then 2 or 3 times per week for maintenance. I just saw the doctor today and she said i should do that forever going forward. I know estrogen taken orally can be dangerous over the long term so I asked about the cream and she said , it does not get into the system and therefore is safe. I am 75 so the safety issue might be different for a younger woman.

I am feeling optimistic i won't get another UTI. Good luck to you and I am hoping this passed on advice might be helpful for you too.

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@annapocono My doctor also put me on estrogen cream. And she said the same thing to only use a pea size amount. But she also asked if I was using a PH balanced soap. At the time, I was not. I've since changed to one and use it every night. I'm 70 and I've taken cranberry tablets for years. But not the brand you are using. I also drink the juice. I'm also faithful taking a probiotic every single day. I've now been on Florastor or another with S. Boulardii since my GI told me to start it last fall along with the regular probiotic. I got the UTI while I was just finishing the Vanco pulse and taper. I took Macrobid. I was told to stay away from Cipro for UTI's. What estrogen cream did she put you on? I'm using Premarin but I guess there is one that's a lot less money. My co-pay for Premarin was over $80. It lasts along time since I'm only using a pea size.

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@lorirenee1

What I mostly do is eat healthy and drink a lot of organic juices. I eat beets and drink organic beet juice all the time, I drink the brand Smart Juice Organic Pomegranate Juice. So delicious. Like dessert. No concentrates. Smart Juice also makes a Super Veggie Juice that is wonderful. I eat mostly chicken and fish. Little red meat. Lots of leafy greens and veggies in general. Only an occasional sweet, and then I dont even like it much. Don't eat fried food. I take Omega 3 Fatty Acid and Turmeric pills everyday. Drink green tea a lot, but I hate it. Can't stand the taste. Drink Kefir. I think that is what it is called. A natural probiotic. LIke a yogurt smoothie. Delicious and so healthy. Instead of taking probiotics. Also, sauerkraut, which is a natural probiotic. I dont use any special website. Lori Renee

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@lorirenee1 I know what you mean about green tea. I read that peppermint tea is good for settling the stomach — and after c. diff my stomach was really queasy and full of gas. So I tried peppermint tea and it has helped lots. I don't love it. I miss coffee a lot but , you know how it is. Priority #1 is getting GI health back. Anna

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@pines

@annapocono My doctor also put me on estrogen cream. And she said the same thing to only use a pea size amount. But she also asked if I was using a PH balanced soap. At the time, I was not. I've since changed to one and use it every night. I'm 70 and I've taken cranberry tablets for years. But not the brand you are using. I also drink the juice. I'm also faithful taking a probiotic every single day. I've now been on Florastor or another with S. Boulardii since my GI told me to start it last fall along with the regular probiotic. I got the UTI while I was just finishing the Vanco pulse and taper. I took Macrobid. I was told to stay away from Cipro for UTI's. What estrogen cream did she put you on? I'm using Premarin but I guess there is one that's a lot less money. My co-pay for Premarin was over $80. It lasts along time since I'm only using a pea size.

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@pines Interesting that we are on the same program. Reassuring! I will switch to a cheaper cranberry pill when i have more confidence that i am not about to get another UTI. The estrogen cream was Premarin — a large tube. It was expensive but not as expensive as yours. I have a supplemental insurance that must have picked up more of the cost. Why isn't medicare paying for this more completely I wonder. I also do probiotics every single day: kefir, sauerkraut, pickles, miso, tempeh etc and want to drink kombucha for he S. Boulardi but so far makes my stomach too gassy. Hoping that won't be true when i have C. Diff further in the rear view mirror. The infectious disease specialist did not want me to take probiotic pills. Because my immunity is , they say, somewhat compromised by mild RA and MGUS, she worried that the live bacteria in the powerful pills might make me sick. The amount in foods she said is more manageable. It's good to hear your story and that of everyone else. Feels good standing together. anna

Liked by pines

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@annapocono

@pines Interesting that we are on the same program. Reassuring! I will switch to a cheaper cranberry pill when i have more confidence that i am not about to get another UTI. The estrogen cream was Premarin — a large tube. It was expensive but not as expensive as yours. I have a supplemental insurance that must have picked up more of the cost. Why isn't medicare paying for this more completely I wonder. I also do probiotics every single day: kefir, sauerkraut, pickles, miso, tempeh etc and want to drink kombucha for he S. Boulardi but so far makes my stomach too gassy. Hoping that won't be true when i have C. Diff further in the rear view mirror. The infectious disease specialist did not want me to take probiotic pills. Because my immunity is , they say, somewhat compromised by mild RA and MGUS, she worried that the live bacteria in the powerful pills might make me sick. The amount in foods she said is more manageable. It's good to hear your story and that of everyone else. Feels good standing together. anna

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@annapocono I was just curious how you drink your kefir…I'm struggling trying to get it down. I also ordered miso – but to be honest, I don't even know what to do with it! About two weeks after I finished Dificid, I have become gassy, I know longer have D, and I got a negative test result, but I have the gas now that I didn't have before!

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@femalegolfer

@annapocono I was just curious how you drink your kefir…I'm struggling trying to get it down. I also ordered miso – but to be honest, I don't even know what to do with it! About two weeks after I finished Dificid, I have become gassy, I know longer have D, and I got a negative test result, but I have the gas now that I didn't have before!

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@femalegolfer I think the gas must be the results from having Cdiff. I have never had so much gas in my life. And it's worse at night or when I get up in the morning. But I also wonder if the S. Boulardii and probiotics aren't part of the reason. But I'm not going to stop them if they're helping my colon and establishing more good bacteria. I happy the Dificid worked for you. It did for me also when Flagyl and Vancomycin did not. I'm happy we have this site to share all our woes. And as Anna said, "feels good standing together." Sherry

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@pines

@femalegolfer I think the gas must be the results from having Cdiff. I have never had so much gas in my life. And it's worse at night or when I get up in the morning. But I also wonder if the S. Boulardii and probiotics aren't part of the reason. But I'm not going to stop them if they're helping my colon and establishing more good bacteria. I happy the Dificid worked for you. It did for me also when Flagyl and Vancomycin did not. I'm happy we have this site to share all our woes. And as Anna said, "feels good standing together." Sherry

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Try simethicone. It may help some with the gas

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@annapocono

@lorirenee1 I know what you mean about green tea. I read that peppermint tea is good for settling the stomach — and after c. diff my stomach was really queasy and full of gas. So I tried peppermint tea and it has helped lots. I don't love it. I miss coffee a lot but , you know how it is. Priority #1 is getting GI health back. Anna

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I cannot give up my coffee. That is my weakness. Love the stuff. Not much of a tea drinker, I am lucky because I seem to do really well if I just stick to my bone broth. If I skip it, I am sure to have the runs….this life of ours is not easy……. Lori

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@lorirenee1

I cannot give up my coffee. That is my weakness. Love the stuff. Not much of a tea drinker, I am lucky because I seem to do really well if I just stick to my bone broth. If I skip it, I am sure to have the runs….this life of ours is not easy……. Lori

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Try drinking half caf coffee. That didn't bother me

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@femalegolfer

@annapocono I was just curious how you drink your kefir…I'm struggling trying to get it down. I also ordered miso – but to be honest, I don't even know what to do with it! About two weeks after I finished Dificid, I have become gassy, I know longer have D, and I got a negative test result, but I have the gas now that I didn't have before!

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@femalegolfer I drink the kefir for breakfast as a smoothie. Here is the recipe: . One cup kefir, about 1 cup steamed fresh spinach (cooled as I think the heat my kill some of the bacteria in the kefir?), i banana, and about a tablespoon of ground ginger. you could substitute some fresh or frozen berries , or whatever, for the spinach. Just play around with things you might like in a smoothie. Hope it works cuz i gather kefir is really good for us. anna

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