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 ?

@patts

Wanted to lay my woes at the feet of people who understood. I was felled with a severe case of colitis. I was sent to ER ON 7/16. I tested negative for C. Diff. at that time. However m they said I had sepsis along with the colitis, so was put IV antibiotics for almost 3 days and sent home with 2 weeks of cipro and flagyl.

This whole colitis attack came out of the blue. I had felt fine up until that point. I was having some bowel issues but nothing serious, so I guess that was the start of colitis.

Now I have c. Diff. from the massive amounts of antibiotics I’ve been on. My gastro doc sent me in for quite a few fecal exams and the only thing that showed up was the c. diff. She immediately put me on 2 weeks of vancomycin.

My doc is telling me how contagious this is. I’ve been sleeping n our guest bedroom, using the guest bathroom, I have my own dinnerware and utensils, I’ve e been wearing gloves and walking around with Clorox wipes. I have one more week of the vancomycin. My hands are pretty raw from the constant washing and using the Clorox wipes.

I am missing a trip to IN for my oldest grandsons birthday. Doctor gave me a “absolutely not” on that one.

I haven’t lost weight and thankfully I feel okay and no pains. Thankfully, I’m retired so it’s no hardship staying at home.

I follow up with my doc on 9/3.

From what I’ve read, I’m really afraid of relapse because this quarantine is driving me crazy and I’m depressed. I don’t want to think this is going to keep interfering with my life!

Thanks for listening to my “oh, woe is me” tale.

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@patts I know how it feels being scared of relapse. i had to take two courses of vanco back to back. I was very very scared of relapse. I am 75 and my c. diff like yours felt like it came out of the blue, but also like you i had previously taken a bunch of antibiotics. In any case I was otherwise in pretty good health. I lost 9 lbs and like i said I was scared of relapse. A good friend who was a nurse practitioner kept reassuring me that my constitution was basically strong and so I wouldn't relapse. And i haven't and it's been 7 months. good luck to you. I think it is very promising that you haven't lost eight and feel okay and no pain.

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@annapocono

@patts I know how it feels being scared of relapse. i had to take two courses of vanco back to back. I was very very scared of relapse. I am 75 and my c. diff like yours felt like it came out of the blue, but also like you i had previously taken a bunch of antibiotics. In any case I was otherwise in pretty good health. I lost 9 lbs and like i said I was scared of relapse. A good friend who was a nurse practitioner kept reassuring me that my constitution was basically strong and so I wouldn't relapse. And i haven't and it's been 7 months. good luck to you. I think it is very promising that you haven't lost eight and feel okay and no pain.

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Thank you, Anna. I’m just a few days in to my second round of Vancomycin (this time a higher dose). I had another set of tests and should see results end of week. This has really cramped my style, lol. I hope I follow your record of no relapse!

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@patts

Thank you, Anna. I’m just a few days in to my second round of Vancomycin (this time a higher dose). I had another set of tests and should see results end of week. This has really cramped my style, lol. I hope I follow your record of no relapse!

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@patts From what my doctor said and what I have read on line, people who are pretty much recovered from c. Diff can continue to test positive for c. Diff at least for a while;
and so,as I understand it, one should not be tested for c Diff unless one has active diarrhea. Otherwise they can keep giving you vanco
When you don’t need it and when it is better to let the body do the finishing up job on it’s own. again good luck to you.

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I am over the diarrhea but I have painful constipation. I bloat so badly I look 9 months pregnant and it’s like thumping a watermelon. Anyone else?

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@nettecook

I am over the diarrhea but I have painful constipation. I bloat so badly I look 9 months pregnant and it’s like thumping a watermelon. Anyone else?

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Me too i had cdiff in june but took untill now for my belly and bloating to decrease. Its not completely gone but ive lost about 3 in across my belly button circumference. I still get some pain low on my belly like near the belly button after eating but per dr suggestion i am eating small meals every couple of hours rather than big ones. He says to much food at once irritates the gut and slows down healing.

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@nettecook

I am over the diarrhea but I have painful constipation. I bloat so badly I look 9 months pregnant and it’s like thumping a watermelon. Anyone else?

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I suffered with C-diff almost a whole year before finally being diagnosed. It took one round of vanco and one round of dificid. I finished that in February and have tested negative since. However, some days I'm sure it is back, then after several days, I feel better. It's been a constant roller coaster. I still bloat awful, it doesn't seem to matter what I eat, not eat or exercise. I am one of the few that gained over 15 pounds while suffering with it. I'm not sure why…I'm still lacking in energy and motivation…I'm wondering if something else is going on. I am 47 and have been very active and healthy up until this hit me.

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@patts

Thank you, Anna. I’m just a few days in to my second round of Vancomycin (this time a higher dose). I had another set of tests and should see results end of week. This has really cramped my style, lol. I hope I follow your record of no relapse!

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@patts I also did a second round of Vanco and even did the pulse and taper for almost six weeks. But Cdiff returned a couple weeks after finishing the taper. Dificid was the med that worked for me after my 4th bout of Cdiff. That was last October so I'm almost one year without a relapse. And believe me, I knock on wood whenever I write or say that. I still deal with terrible gas pains late at night and early morning. I wish you well and certainly understand what you're going through. Until you've gone through this dreaded Cdiff, I don't think people truly understand how debilitating it can be…. both mentally and physically.

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Well, I tested positive again, which doesn’t surprise me as the test was taken the day after I started my second round of higher dose vanco. Still have a week to go on this round. Things have gotten better bowel wise, so I’m hoping I can take a break from this.

Mentally, I’m so over this. Being kept in the house this long is driving me crazy. The constant gloves, Clorox wipes and bleach is affecting me too— I’m a pariah!

My next gastro appointment is Wednesday. I’m sure she’ll want another test.

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@patts

Well, I tested positive again, which doesn’t surprise me as the test was taken the day after I started my second round of higher dose vanco. Still have a week to go on this round. Things have gotten better bowel wise, so I’m hoping I can take a break from this.

Mentally, I’m so over this. Being kept in the house this long is driving me crazy. The constant gloves, Clorox wipes and bleach is affecting me too— I’m a pariah!

My next gastro appointment is Wednesday. I’m sure she’ll want another test.

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@patts I’m so sorry you are still sick. I remember the feeling of “this is never going to go away!” I was so frustrated of feeling like the walking plague. My doc didn’t keep testing me. He went by my symptoms. I had 3 rounds of Vanco. My insurance wouldn’t cover Dificud. I had a FMT in Feb of this year and just now feel like I’m getting in a normal rhythm to some extent. I also have Crohns so it’s complicated. I want to give you some hope when you feel like you keep getting slammed! This group understands.

Those who are suffering from gas and bloating post c-Diff….. I’m trying this… I’m taking 100 mg stool softener every night as well as a gas-x every morning and night. My gastro prescribed Bentyl to take for the cramps. 10-20 mgs up to 4 times a day. It seems to be helping. Gas x has never helped me but I decided I was going to see. I also take 500 mg of Magnesium twice daily. Obviously, I am not having diarrhea again… 🤪. The first night I took the stool softener I had an accident in bed, so I had to play with the dose for awhile. I too am 47. 🙄

Liked by danab

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@nettecook

@patts I’m so sorry you are still sick. I remember the feeling of “this is never going to go away!” I was so frustrated of feeling like the walking plague. My doc didn’t keep testing me. He went by my symptoms. I had 3 rounds of Vanco. My insurance wouldn’t cover Dificud. I had a FMT in Feb of this year and just now feel like I’m getting in a normal rhythm to some extent. I also have Crohns so it’s complicated. I want to give you some hope when you feel like you keep getting slammed! This group understands.

Those who are suffering from gas and bloating post c-Diff….. I’m trying this… I’m taking 100 mg stool softener every night as well as a gas-x every morning and night. My gastro prescribed Bentyl to take for the cramps. 10-20 mgs up to 4 times a day. It seems to be helping. Gas x has never helped me but I decided I was going to see. I also take 500 mg of Magnesium twice daily. Obviously, I am not having diarrhea again… 🤪. The first night I took the stool softener I had an accident in bed, so I had to play with the dose for awhile. I too am 47. 🙄

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So far my docs suggest ion is helping also. Eating small meals every 2 hours.

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@nettecook

@patts I’m so sorry you are still sick. I remember the feeling of “this is never going to go away!” I was so frustrated of feeling like the walking plague. My doc didn’t keep testing me. He went by my symptoms. I had 3 rounds of Vanco. My insurance wouldn’t cover Dificud. I had a FMT in Feb of this year and just now feel like I’m getting in a normal rhythm to some extent. I also have Crohns so it’s complicated. I want to give you some hope when you feel like you keep getting slammed! This group understands.

Those who are suffering from gas and bloating post c-Diff….. I’m trying this… I’m taking 100 mg stool softener every night as well as a gas-x every morning and night. My gastro prescribed Bentyl to take for the cramps. 10-20 mgs up to 4 times a day. It seems to be helping. Gas x has never helped me but I decided I was going to see. I also take 500 mg of Magnesium twice daily. Obviously, I am not having diarrhea again… 🤪. The first night I took the stool softener I had an accident in bed, so I had to play with the dose for awhile. I too am 47. 🙄

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Thanks, Nette. I’m hoping my doc will go by the symptom too as in havent been making numerous mad dashes to the bathroom multiple times a day. I’ll happily finish my vanco prescription and see where we go from there.

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Oh my goodness, I am so sorry you have Cdiff. The worse possible thing you can have. I had it back in 2011 for a year, they obviously didn't know how to treat it then or maybe just in my local hospital which is very possible.. I had it again just a few months ago, apparently Keflex is an antibiotic that wakes it up when it is lying dormant. DO NOT HAVE KEFLEX, REMEMBER THAT OR WRITE It DOWN SOMEWHERE!! Vanco is the best anti that they have now and it cleared me up in a week and a half but I had to stay in the hospital for that week and a half, ugh!!!. I wish you the best. Awful!!!

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Definitely writing that one down!

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@patts

Definitely writing that one down!

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And Clindamycin. The one that got me was Sulfasalazine…

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@nettecook

And Clindamycin. The one that got me was Sulfasalazine…

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My Gastro Dr also mentioned Amoxicillin. I take it for dental work but he said a one day use should be fine.

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