C. difficile – Are your guts ever normal again?
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 ?
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@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.
@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.
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.
@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.
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?
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.
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
@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. 🤦♀️
@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?
@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!