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 ?

@suzannedee

Hi Ngorman25, so sorry younjad to battle the CDiff. I have had CDiff more times then I want to know. Since my daughter was born in 1992. I had it for a year on and off. Then got it again after a bout of antibiotics. Then years later I started getting the symptoms really bad with diarrhea and bad cramping for weeks on end. The tests were Negative which I could not believe. I would be put on Flagyl and sooner or later it would go away. This was three years of suffering with this. Running to the bathroom after eating and always needing to know where the bathrooms were near. Finally within the last month after months of on and off symptoms which I was told I most likely have IBS, I thought well I have to stop this diarrhea so I started taking Imodium. Total mistake. I knew in my own mind I had CDiff but since it kept coming back neg I went with the IBS. Total difference though between IBS is people do not go through the night. I was going about 18 to 20 times a day and night. . I was exhausted and getting very sick. Fever. Etc Felt like I had the flu. Taking the Imodium made CDiff go crazy. Went to ER and they dismissed it as the flu. Well, that was enough, as I was suffering intensely with a 102 to 103 fever for weeks. With the worst pain and diarrhea. Finally my dr said go to Orlando Health Hospital, ASAP. I walked in feeling quite sick and thought I am either going to die because they are Not getting positive test results and then they don’t treat or these people are going to help me. I had had it. Finally, the wonderful ER doc sent me up to cat scan for a scan of my colon. Then he wanted to culture of my stool which was what I would refer to green tea of the worst kind. The doc came quickly innafter the tests and said you have a bad case of colitis with CDiff and you are being admitted to critical care. Finally the test came back positive. Since I have chronic CDiff often times the tests come back negative. They put me on Flagyl and Vanco right away. I was vomiting everything I ate and still going about 10 times an hour. Horrible. After almost two weeks in the hospital I was able to eat a little which is only carb type food, everything liquid I would throw up right away. Bread stayed down. Went home on vanco now on for three weeks. Just now functioning more normal but still not perfect. I know once I go off this vanco the CDiff will return. So I have opted for the Fecal transplant. My docs have all recommended it and I am now in the first part of the process of getting ready for it. I have read of the amazing success. But wanted to ask those who have had it have you had any weight gain the transplant!!!! I would love to hear from people who have done this. I am super excited to know there is a cure as I have been suffering for a long time with many episodes of long term hanging in bathrooms and being in chronic pain. Not my favorite place to be. Let alone having to eat almost nothing to try and feel better. Thanks for any feedback and I truly feel for those who have to endure the horrible world of CDiff. Best of luck to all as there is help out there.

Jump to this post

@suzannedee I am so sorry you have been so sick. After my first bout of CDiff my test came back negative but my doc was convinced it was a false reading so he treated me 3 more times before the transplant. I think false negatives are common. I had the FMT on Feb 28 and it took at least a month until I was convinced it was gone but I still am not “normal.” I don’t feel like I have been hit by a truck anymore, energy is slowly coming back, but my bowels are unpredictable. I think I do have IBS again(I have it and Crohn’s) but the horrid CDiff seems to be fading for now. The nurse told me when I called that it takes a good while to feel good. Here is what is so strange. I did not lose weight. I also don’t lose weight from 18-20 times of diarrhea a day with Crohn’s. So strange. Vanco can cause weight gain and prednisone can cause weight gain. I was usually on prednisone with Crohn’s flares so I guess that’s it. I did not have to be admitted for CDiff. You were really very sick. I’m so sorry no one took you seriously. I’m
Also scared to hear your first bout was in 1992 and you are STILL dealing with the risk of CDiff. Ugh Good luck with the FMT. It is not a big deal at all.

REPLY
@ngorman25

@suzannedee Hi, suzannedee, today marks 4 weeks post fmt. I wish I had words of encouragement for you, but I don't! Up until two days ago, I felt really good. But on Wednesday night I started having some mucus discharge. I am still having a lot of mucus and know I have to contact my gastro doctor. I am terrified! I haven't even mentioned it to my family yet. I am so done.

Jump to this post

@ngorman25 . I have had lots of mucous. I have had only one episode of c.diff. I took vanco for 20 days and since then my bowels have been all over the place but slowing improving. Off and on I go through a mucous period — lots of it, wrapped around the stools, and also just blobs of it. My doctor was not worried about the mucous. She said that it is like the mucous from your nose when you have a cold. It is a sign of inflammation. so since ending vance I have had two big bouts of mucous lasting several days, maybe even a week. And then the mucous has disappeared. I hope yours does the same.

REPLY
@lindac61

I was actually taking a proton pump inhibitor (omeprazole) for 6 mo before and while taking clindamycin. I had been wanting to get off it so when I started having my “issues” before I was diagnosed with c diff I just quit the omeprazole cold turkey. I believe that it can contribute to getting c diff as it blocks the acid production. I have changed my diet since so not having the acid reflux as much. I am 3 weeks post Dificid and so far ok. 🤞 I must say that I worry every day that it is going to come back though.

Jump to this post

I have bad gas since C. Diff. My doctor tells me that all Proton pump inhibitors (omeoprazole and some others ) as well as H2Blockers (which include Zantac) increase the risk of relapse. My primary care doctor told me to take Zantac. It took me one minute on google to see that there was a Mayo study that said it increased the risk of C.Diff relapse. We need to google every med we take.

REPLY
@suzannedee

Hi Ngorman25, so sorry younjad to battle the CDiff. I have had CDiff more times then I want to know. Since my daughter was born in 1992. I had it for a year on and off. Then got it again after a bout of antibiotics. Then years later I started getting the symptoms really bad with diarrhea and bad cramping for weeks on end. The tests were Negative which I could not believe. I would be put on Flagyl and sooner or later it would go away. This was three years of suffering with this. Running to the bathroom after eating and always needing to know where the bathrooms were near. Finally within the last month after months of on and off symptoms which I was told I most likely have IBS, I thought well I have to stop this diarrhea so I started taking Imodium. Total mistake. I knew in my own mind I had CDiff but since it kept coming back neg I went with the IBS. Total difference though between IBS is people do not go through the night. I was going about 18 to 20 times a day and night. . I was exhausted and getting very sick. Fever. Etc Felt like I had the flu. Taking the Imodium made CDiff go crazy. Went to ER and they dismissed it as the flu. Well, that was enough, as I was suffering intensely with a 102 to 103 fever for weeks. With the worst pain and diarrhea. Finally my dr said go to Orlando Health Hospital, ASAP. I walked in feeling quite sick and thought I am either going to die because they are Not getting positive test results and then they don’t treat or these people are going to help me. I had had it. Finally, the wonderful ER doc sent me up to cat scan for a scan of my colon. Then he wanted to culture of my stool which was what I would refer to green tea of the worst kind. The doc came quickly innafter the tests and said you have a bad case of colitis with CDiff and you are being admitted to critical care. Finally the test came back positive. Since I have chronic CDiff often times the tests come back negative. They put me on Flagyl and Vanco right away. I was vomiting everything I ate and still going about 10 times an hour. Horrible. After almost two weeks in the hospital I was able to eat a little which is only carb type food, everything liquid I would throw up right away. Bread stayed down. Went home on vanco now on for three weeks. Just now functioning more normal but still not perfect. I know once I go off this vanco the CDiff will return. So I have opted for the Fecal transplant. My docs have all recommended it and I am now in the first part of the process of getting ready for it. I have read of the amazing success. But wanted to ask those who have had it have you had any weight gain the transplant!!!! I would love to hear from people who have done this. I am super excited to know there is a cure as I have been suffering for a long time with many episodes of long term hanging in bathrooms and being in chronic pain. Not my favorite place to be. Let alone having to eat almost nothing to try and feel better. Thanks for any feedback and I truly feel for those who have to endure the horrible world of CDiff. Best of luck to all as there is help out there.

Jump to this post

@suzannedee My heart goes out to you. I also tested negative between my 3rd and 4th bouts of Cdiff last year. I had to go almost a week before they would retest knowing that it was Cdiff. After reading up on everything I could find, I also found there was more than one test for Cdiff. It takes longer but is more accurate. I too did Flagyl, Vanco, then Vanco taper for 6 weeks and finally the expensive Dificid (fidaximicin). I had decided FMT would be the next recourse for me. Thankfully, the Dificid worked. I'm still not "normal" and realize that it could take a year or longer. I was fortunate that I made it through winter without sinus infections and needing an antibiotic. Clindamycin for one was what started this dreadful Cdiff for me. Stay positive and keep us updated after your FMT.

REPLY

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?

REPLY
@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?

Jump to this post

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.

REPLY

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

REPLY
@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

Jump to this post

@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. 🤦‍♀️

REPLY
@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. 🤦‍♀️

Jump to this post

@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?

REPLY
@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?

Jump to this post

@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!

REPLY
@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

Jump to this post

@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.

REPLY
@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. 🤦‍♀️

Jump to this post

@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

REPLY
@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.

Jump to this post

@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. 🙂

REPLY
@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!

Jump to this post

@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.

REPLY
@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.

Jump to this post

@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!

REPLY
Please login or register to post a reply.