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 ?

@angeladw

Has anyone recovered fully from CDiff? I ended up with anal fissure from cdiff all the diarrhea. I’ve had biopsy from stomach, small intestines, and colon and they are negative but my stomach cramps, a lot of gas , bloating, and diarrhea. I’m tired of feeling bad and have to stay close to a bathroom. Any Hope out there that it will get better?

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The only thing that seems to help with diarrhea and bloating is Creon (pancreatic enzymes with meals.This is an off label use ) This is an expensive drug the company has a patient assistance program. This is not a total cure for all my bloating,but it has decreased it. The diarrhea is 90% gone. I had tried the FODMAP diet for a year… this showed me some of the foods to stay away from (that cause extreme bloating) you should be on a daily probiotic such as floraster or VSL#3 . No Dr. has been able to give me any answers. Good luck,Happy Easter.

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Forgive me…I know nothing about what you have…just trying to be helpful. I have seen these two things help the gut wonderfully. Back stories on both if you want to know….but…..won't bother you with details. Eat fresh papaya. The real fruit. Every day. Also, and imperative….use bone broth. Most easily used in powdered form, and must be used with vitamin C. Put a few tablespoons of it into juices, smoothies, soups, teas,….do this at least twice. a day. It straightens out a messed up colon. Try it for a few weeks and see what happens. Get bone broth at a health food store. My colon cannot be without it. Research it. Fabulous for healthy immunity and leaky guy. Best of luck to you…. Lori Renee

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@lorirenee1

Forgive me…I know nothing about what you have…just trying to be helpful. I have seen these two things help the gut wonderfully. Back stories on both if you want to know….but…..won't bother you with details. Eat fresh papaya. The real fruit. Every day. Also, and imperative….use bone broth. Most easily used in powdered form, and must be used with vitamin C. Put a few tablespoons of it into juices, smoothies, soups, teas,….do this at least twice. a day. It straightens out a messed up colon. Try it for a few weeks and see what happens. Get bone broth at a health food store. My colon cannot be without it. Research it. Fabulous for healthy immunity and leaky guy. Best of luck to you…. Lori Renee

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@sandyabbey @pines @ngorman25 and whoever else is worried about reinfection..!😩. My mother in law had CDiff 2 years ago. She had been on antibiotics for awhile for recurrent UTI’s. Well, she is in the hospital now with it again and has not been on antibiotics. I had my FMT on Feb 28 and for the last 2 weeks I am finally feeling better. I haven’t seen my MIL in over a month. Have your docs told you that you will forever be more susceptible to getting c diff again regardless if you have been on antibiotics? I’m concerned about the future of getting c diff again out of the blue like she did as well as concerned that I could have reinfected my MIL even though I took all the safety precautions. Other family members are taking care of her now and I will definitely stay away from her. This makes me so sad because I would like to help her but I can’t. Do you all feel like you are the plague, just moments away from infecting someone? I feel like no matter how clean I make my house, c diff germs are lurking. 🤦‍♀️

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@nettecook

@sandyabbey @pines @ngorman25 and whoever else is worried about reinfection..!😩. My mother in law had CDiff 2 years ago. She had been on antibiotics for awhile for recurrent UTI’s. Well, she is in the hospital now with it again and has not been on antibiotics. I had my FMT on Feb 28 and for the last 2 weeks I am finally feeling better. I haven’t seen my MIL in over a month. Have your docs told you that you will forever be more susceptible to getting c diff again regardless if you have been on antibiotics? I’m concerned about the future of getting c diff again out of the blue like she did as well as concerned that I could have reinfected my MIL even though I took all the safety precautions. Other family members are taking care of her now and I will definitely stay away from her. This makes me so sad because I would like to help her but I can’t. Do you all feel like you are the plague, just moments away from infecting someone? I feel like no matter how clean I make my house, c diff germs are lurking. 🤦‍♀️

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@nettecook Oh I'm so sorry to hear about your mother-in-law. Do you also think you got it from her? I've not heard of any other family members giving it to each other. But I do understand how you feel about feeling like "you are the plague." I had people stay away from me for fear of getting it. Hand washing is really the key. I'm happy to hear that you are doing better after your FMT. Will your MIL be having FMT?

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@pines

@nettecook Oh I'm so sorry to hear about your mother-in-law. Do you also think you got it from her? I've not heard of any other family members giving it to each other. But I do understand how you feel about feeling like "you are the plague." I had people stay away from me for fear of getting it. Hand washing is really the key. I'm happy to hear that you are doing better after your FMT. Will your MIL be having FMT?

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@pines I don’t think I got it from her as so much time had passed. However, maybe it was dormant in me? I did take care of her when she was sick. I was on that antibiotic for 10 months and got C diff 2 weeks after getting off of it. My husband thinks I’m being a little too careful but I do not want to go through this again. If it lives in surfaces.. well, surfaces are all over your house. So much of this is trial by error and a mystery!

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@lorirenee1

Forgive me…I know nothing about what you have…just trying to be helpful. I have seen these two things help the gut wonderfully. Back stories on both if you want to know….but…..won't bother you with details. Eat fresh papaya. The real fruit. Every day. Also, and imperative….use bone broth. Most easily used in powdered form, and must be used with vitamin C. Put a few tablespoons of it into juices, smoothies, soups, teas,….do this at least twice. a day. It straightens out a messed up colon. Try it for a few weeks and see what happens. Get bone broth at a health food store. My colon cannot be without it. Research it. Fabulous for healthy immunity and leaky guy. Best of luck to you…. Lori Renee

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@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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@nettecook

@sandyabbey @pines @ngorman25 and whoever else is worried about reinfection..!😩. My mother in law had CDiff 2 years ago. She had been on antibiotics for awhile for recurrent UTI’s. Well, she is in the hospital now with it again and has not been on antibiotics. I had my FMT on Feb 28 and for the last 2 weeks I am finally feeling better. I haven’t seen my MIL in over a month. Have your docs told you that you will forever be more susceptible to getting c diff again regardless if you have been on antibiotics? I’m concerned about the future of getting c diff again out of the blue like she did as well as concerned that I could have reinfected my MIL even though I took all the safety precautions. Other family members are taking care of her now and I will definitely stay away from her. This makes me so sad because I would like to help her but I can’t. Do you all feel like you are the plague, just moments away from infecting someone? I feel like no matter how clean I make my house, c diff germs are lurking. 🤦‍♀️

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@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.

Liked by pines

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@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 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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@nettecook

@pines I don’t think I got it from her as so much time had passed. However, maybe it was dormant in me? I did take care of her when she was sick. I was on that antibiotic for 10 months and got C diff 2 weeks after getting off of it. My husband thinks I’m being a little too careful but I do not want to go through this again. If it lives in surfaces.. well, surfaces are all over your house. So much of this is trial by error and a mystery!

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@nettecook I totally understand your husband…. and I also think Cdiff makes us paranoid. I know I fear ever getting it again. Wishing you and your mother-in-law good health in 2019.

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@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 I agree with your doctor's regarding being contagious. I also​agree with you regarding peppermint tea. I looked up papaya and it does say that it's good for the colon so I probably will try it. Don't know about the bone broth. Will think more about this. As for me, I am feeling so-so. I still have mucus but no diarrhea yet! If that happens, I will have to contact my gastro doctor. I am just over 4 weeks post fmt and have an appointment on May20 (if I make it that long!). I have been trying to gain weight but no luck. I still weigh 88 pounds. So glad I found this website! Misery does indeed love company! It's the only place I feel people understand what this devastating disease is like. There's not enough exposure regarding this infection. Drives me crazy. Most of my family and friends and myself, had never heard of cdiff before last September when I went to the hospital and was diagnosed. It's like a big secret!

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@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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