C. diff relapse?

Posted by patts @patts, Sep 1, 2019

How many have had a relapse. I finished my two weeks of vancomycin and believe I still have it. Did a stool sample Friday, so I guess I’ll see. Tired of isolation, Clorox and mood.

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Profile picture for euqcaj @euqcaj

I contracted C-diff after taking Clyndamycin for a dental issue. It was horrible! I truly thought I was not going to make it and neither did my husband. It has taken months to recover thoroughly. I am normally an active person who exercises 6 days a week and tries to stay healthy. This set me back immensely. I was weak for quite a while. Gradually I've improved to the point where my life has returned to "my normal". I also have a "tortuous intestine" (more intestine than needed for a person my size), which has caused me grief and constipation all my life. And actually, through this site, and sharing, I found Prunelax that has helped me more than I can say. I would never want C-diff again but I'm grateful for finding this site. When I was recovering I took pro-biotics for two months along with Miralax, (which did nothing) stool softener, etc. Nothing worked like the Prunelax. I still make sure I'm getting the proper fiber, water intake, and I am taking magnesium but I plan on dropping that when I finish the bottle. It's always a learning process and adjustments need to be made that work best for you as an individual. But as far as recovering from C- diff it took me 9 months to almost get back to the real me. I have lost 10 pounds that I can't seem to gain back and that puzzles me but I'm doing well. I hope that everyone finds what works for them. I know it can be scary and very frustrating to go through this. And initially I was just trying to survive so I understand the fear. Best wishes to all! Merry Christmas! Jacque

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Oh my goodness. Terrible. How did you get rid of the C. Diff? Flagyl, Vancomycin, Deficid? Any of these work for you?

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Profile picture for p95 @p95

Wondering if the Vancomycin failed and that's why they put you on the Dificid. Is that correct. I'm on my 3 round of antibiotics; i.e., 1st 14 days on Flagyl, 2nd 14 days on Vancomycin and started a 3rd round of Vancomycin that I'm now on day 6 of 14 and it still hasn't stopped the diarrhea and that tell-tale smell. Did the Dificid work for you?

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My first round of Vanco did not work so tried the Dificid. It obviously did not get it all even tho I felt normal again for about 4-6 weeks except for 1x daily stool that was never “normal”. Was formed but fell apart upon flushing and looked feathery is the only way I know how to describe it. And I would have to go as soon as my feet hit the floor every morning but since it was only once per day, I thought it would just take time to get back to a normal texture, and solid stool. That never happened. I think the Dificid knocked it back but didn’t kill all of it and it just simmered and grew again. Then began 2-3 trips to toilet for a couple days while experiencing that same extreme fatigue and overall sick feeling that came with the first bout back in December. Stool test positive for second time. I must say that this second bout has been much milder than first. There are good days and bad days. Your anxiety can be your worst enemy with this infection because you’re so frustrated and depleted and there’s so much “waiting to get better” time.I have no idea if this second round of stronger Vanco will cure it or not. The odds are not in my favor now b/c of my age. Seeing gastro again on Monday for more info. I pray for healing everyday and will pray for you as well.

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Profile picture for cre8tive @cre8tive

My first round of Vanco did not work so tried the Dificid. It obviously did not get it all even tho I felt normal again for about 4-6 weeks except for 1x daily stool that was never “normal”. Was formed but fell apart upon flushing and looked feathery is the only way I know how to describe it. And I would have to go as soon as my feet hit the floor every morning but since it was only once per day, I thought it would just take time to get back to a normal texture, and solid stool. That never happened. I think the Dificid knocked it back but didn’t kill all of it and it just simmered and grew again. Then began 2-3 trips to toilet for a couple days while experiencing that same extreme fatigue and overall sick feeling that came with the first bout back in December. Stool test positive for second time. I must say that this second bout has been much milder than first. There are good days and bad days. Your anxiety can be your worst enemy with this infection because you’re so frustrated and depleted and there’s so much “waiting to get better” time.I have no idea if this second round of stronger Vanco will cure it or not. The odds are not in my favor now b/c of my age. Seeing gastro again on Monday for more info. I pray for healing everyday and will pray for you as well.

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@cre8tive I, too, suffered from cdiff in 2018. Also had 3 separate relapses which brought me into March of 2019. At that time, my gastroenterologist suggested fmt which I did and so far has been successful. I, too, wondered why I wasn't offered fmt sooner? I have decided it's the drug company that produces vancomycin. I truly believe that they make the patient go through 3 rounds of vancomycin ( which for me was very expensive!) The fmt costs a lot less but they don't give a hoot about the patient! I still have not been able to gain back the 14 lbs I lost. I don't know of anyone who has been able to get the fmt after the first or second relapse. It's all about the money!

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Profile picture for cre8tive @cre8tive

My first round of Vanco did not work so tried the Dificid. It obviously did not get it all even tho I felt normal again for about 4-6 weeks except for 1x daily stool that was never “normal”. Was formed but fell apart upon flushing and looked feathery is the only way I know how to describe it. And I would have to go as soon as my feet hit the floor every morning but since it was only once per day, I thought it would just take time to get back to a normal texture, and solid stool. That never happened. I think the Dificid knocked it back but didn’t kill all of it and it just simmered and grew again. Then began 2-3 trips to toilet for a couple days while experiencing that same extreme fatigue and overall sick feeling that came with the first bout back in December. Stool test positive for second time. I must say that this second bout has been much milder than first. There are good days and bad days. Your anxiety can be your worst enemy with this infection because you’re so frustrated and depleted and there’s so much “waiting to get better” time.I have no idea if this second round of stronger Vanco will cure it or not. The odds are not in my favor now b/c of my age. Seeing gastro again on Monday for more info. I pray for healing everyday and will pray for you as well.

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Thank you for your detailed account. I am 67. As I mentioned before, the Flagyl failed and I am now on my 2nd 14 days of Vancomycin which isn't working either. I called my GI doc and begged for something to stop the diarrhea since they won't let me take any immodium. He called in Cholestyramine and Dificid. I started the Cholestyramine yesterday it seems for be firming up my stool slightly. At least after the first 2 morning movements (4:30 am and 5:00 am), I have had 5 more very small movements that stuck together (barely). I'm waiting on the pharmacy to get the Dificid in and am praying it will work. This is ruining my and my husband's life. Thank you for your prayers. I will pray for you too!

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Profile picture for ngorman25 @ngorman25

@cre8tive I, too, suffered from cdiff in 2018. Also had 3 separate relapses which brought me into March of 2019. At that time, my gastroenterologist suggested fmt which I did and so far has been successful. I, too, wondered why I wasn't offered fmt sooner? I have decided it's the drug company that produces vancomycin. I truly believe that they make the patient go through 3 rounds of vancomycin ( which for me was very expensive!) The fmt costs a lot less but they don't give a hoot about the patient! I still have not been able to gain back the 14 lbs I lost. I don't know of anyone who has been able to get the fmt after the first or second relapse. It's all about the money!

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Thank you for that information. Yes, from what I've been reading, you have to relapse at least twice before they consider FMT. This is my first bout of C. Diff. and I had no idea how awful it is for anyone going through it. After 14 days of Flagyl, and 2 - 14 day rounds of Vancomycin, my GI doc called in Dificid which I'm waiting on the pharmacy to receive. I'm just praying the Dificid will work. I'm so happy for you that the FMT worked and you've been free from the C. Diff for what 2 years now! That's great.

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Profile picture for p95 @p95

Hi, I 'm new here. I have a question about whether my C. Diff. is gone or not. I have had IBS for 10 years and the symptoms are the same except my C. Diff stool has a sickening sweet smell still. I was diagnosed with C. Diff on 1-28-22 and my GI doc started me on Flagyl (metronidazole) for 14 days. After 11 days, the cramping had stopped, but I still had diarrhea with belly distension and smelly stool so I called my GI doc and he ordered Vancomycin 250 mg 4 times a day for 14 days. I started the Vanco on 2-11-22 and am now on the 10th day of that. I had a couple of days where my first stool of the day was formed but the 4 movements afterward were diarrhea. Today, I'm back to very loose stools all morning. So basically, I've been on antibiotics for 3 weeks and have morning diarrhea with that sickening sweet smell. Usually, with my IBS, the diarrhea would stop by noon and I was fine the rest of the day until the next morning, but my stool was not that sickening sweet smell. My IBS always vacillated between diarrhea and constipation so I'm wondering if I still have the C. Diff. since now, I'm done with the diarrhea by 11 am, but my diarrhea still has that sickening smell. Anybody else experienced anything like this?

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I’m curious about the cost of your Dificid? Mine was “covered” by insurance but still cost me $1300 out of pocket versus $20 for Vanco. Have you been able to get Dificid at a reasonable cost? It’s actually supposed to work better than Vanco but neither have worked for me. Just curious?

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Profile picture for p95 @p95

Hi, I 'm new here. I have a question about whether my C. Diff. is gone or not. I have had IBS for 10 years and the symptoms are the same except my C. Diff stool has a sickening sweet smell still. I was diagnosed with C. Diff on 1-28-22 and my GI doc started me on Flagyl (metronidazole) for 14 days. After 11 days, the cramping had stopped, but I still had diarrhea with belly distension and smelly stool so I called my GI doc and he ordered Vancomycin 250 mg 4 times a day for 14 days. I started the Vanco on 2-11-22 and am now on the 10th day of that. I had a couple of days where my first stool of the day was formed but the 4 movements afterward were diarrhea. Today, I'm back to very loose stools all morning. So basically, I've been on antibiotics for 3 weeks and have morning diarrhea with that sickening sweet smell. Usually, with my IBS, the diarrhea would stop by noon and I was fine the rest of the day until the next morning, but my stool was not that sickening sweet smell. My IBS always vacillated between diarrhea and constipation so I'm wondering if I still have the C. Diff. since now, I'm done with the diarrhea by 11 am, but my diarrhea still has that sickening smell. Anybody else experienced anything like this?

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My husband has had C.diff since late December. Is on 3rd round of Vanco and had one round of Dificid. The copay on Dificid was $1500. The first Vanco had a copay of $28, the second a copay of $450. When he got the 3rd prescription, his Part D drug plan said he couldn’t get a refill (even when prescribed by infectious medicine doc. Pharmacist suggested using goodRX, where we bought it for $300. His doctor sent a letter to drug plan and now they may cover it again but goodRX will be cheaper. He is now tapering slowly so hope it works. He is better, but not back to normal.

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Profile picture for cre8tive @cre8tive

I’m curious about the cost of your Dificid? Mine was “covered” by insurance but still cost me $1300 out of pocket versus $20 for Vanco. Have you been able to get Dificid at a reasonable cost? It’s actually supposed to work better than Vanco but neither have worked for me. Just curious?

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I haven't gotten the Dificid yet. It's on order at the pharmacy, but I can price a medication online with my insurance company and it says it will cost me $1,251.61 for 20 pills (10 day supply). It shows the rest $3,555.15 covered by the plan. Expensive, especially if it doesn't work.

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Profile picture for p95 @p95

Hi, I 'm new here. I have a question about whether my C. Diff. is gone or not. I have had IBS for 10 years and the symptoms are the same except my C. Diff stool has a sickening sweet smell still. I was diagnosed with C. Diff on 1-28-22 and my GI doc started me on Flagyl (metronidazole) for 14 days. After 11 days, the cramping had stopped, but I still had diarrhea with belly distension and smelly stool so I called my GI doc and he ordered Vancomycin 250 mg 4 times a day for 14 days. I started the Vanco on 2-11-22 and am now on the 10th day of that. I had a couple of days where my first stool of the day was formed but the 4 movements afterward were diarrhea. Today, I'm back to very loose stools all morning. So basically, I've been on antibiotics for 3 weeks and have morning diarrhea with that sickening sweet smell. Usually, with my IBS, the diarrhea would stop by noon and I was fine the rest of the day until the next morning, but my stool was not that sickening sweet smell. My IBS always vacillated between diarrhea and constipation so I'm wondering if I still have the C. Diff. since now, I'm done with the diarrhea by 11 am, but my diarrhea still has that sickening smell. Anybody else experienced anything like this?

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The best way to get rid of C-Diff is a fécal transplant. I read somewhere that you can buy poo pills today not certain where you can find them!🤭

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Profile picture for atina @atina

The best way to get rid of C-Diff is a fécal transplant. I read somewhere that you can buy poo pills today not certain where you can find them!🤭

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I don't think the poo pills have gotten completely through clinical trials yet. Here's a link to an article published earlier this year that I found on the internet.
https://www.science.org/content/article/pill-derived-human-feces-treats-recurrent-gut-infections

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