1. < Digestive Health

What happens after C.Difficile?

Posted by dn22 @dn22, Dec 6, 2018

I got C.diff back in October (early to mid). I had taken clindamycin for BV and it didn't react well for me. I went into the ER for intense pain, bloating, and diarrhea. They found out I had a severe case of colitis, my entire bowel system was extremely inflamed. But they didn't know what type of colitis it was until my 3rd day there. Then they did the colonoscopy, endoscopy, and biopsy. So they treated me with antibiotics. Sent me home with more antibiotics. And after finishing them, and giving it a few days I felt better.

I was still more aware of my bowels, which is saying something since I have IBS already. But other than awareness, and maybe some tenderness in a way, it was normal. Then Thanksgiving came, and I ate what my family made. I had immediate diarrhea and pain. I thought it was the dairy, bc I forgot to start taking my IBS meds again. They had me stop taking them for awhile after being diagnosed with c.diff. Then I tried the food the next day, after taking my IBS meds. Same issues.

So I decided no more thanksgiving food. But the pain, bloating, twisting feeling, and pooping didn't stop. And I would get the urge, but when I went to go, it'd be a lot of gas, that was hard put to come up. When I would poop, the stool itself was very hard, and not a lot would come out.
My mother bought me stool softener. It made the stool less dry and sandpaper-like. But I still wasn't getting any relief.
So last Friday she gave me some of her Super Colon Cleanse (about 3/4-5/8 of a scoop/serving) mixed with Metamucil in a water bottle. And I drunk half the mixture. I still haven't stopped pooping. I'm pooping for hours again, just like with c.diff. No blood this time though. And the stool is pellet like.
I keep waking up to poop, or try to poop. I can't eat anything. Especially not carbs or dairy. I feel like I'm dying, but in a very different way than when I had c.diff.
I don't know what's happening. If I should go to the hospital or not. Or if c.diff has different symptoms the 2nd time around. Or if, because it was such a severe case, that my bowels were damaged somehow. I'm really just not all right, and idk what to do.

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rexsan20 | @rexsan20 | Feb 20, 2022
In reply to @rexsan20 "I had it also and was on vancomycin but I also had ulcerative colitis. For the..." + (show)
@rexsan20

I had it also and was on vancomycin but I also had ulcerative colitis. For the UV I was taking the Mesalamine. This happened last year. I just got off the Mesalmaine. No c diff has recurred. Ye Is know that c diff wears your body out. I lost 20 pounds. I have been on this robotic, Florastor. I take 2 times a day.

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not robotic.....probotic

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p95 | @p95 | Feb 21, 2022
In reply to @guthealth "Please see my other posts about this. It is not just taking antibiotics but also preventing..." + (show)
@guthealth

Please see my other posts about this. It is not just taking antibiotics but also preventing relapses through eating proper diet post antibiotics that does not produce inflammation or allows the bad bacteria to return. I took four rounds of antibiotics and it was not until I changed my diet that I stopped relapsing. Can’t emphasize this enough. Since I changed my diet, I have gained seven of the twenty pounds I lost in three months and (knock on wood) have not experienced diarrhea in twenty two days. I could see improvement within a week of starting to work with a nutritionist. I was clueless and so was my GI doctor.

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Please share how you changed your diet.

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lengel | @lengel | Feb 21, 2022
In reply to @jond "I'm on my second recurrence and I'm not on antibiotics at the moment. Waiting to see..." + (show)
@jond

I'm on my second recurrence and I'm not on antibiotics at the moment. Waiting to see a Gastro later this month. My symptoms were really bad a few weeks ago, no blood but I had the cramping the watery stools, extremely painful gas, blah blah blah... but I stepped up my intake on s. Boulardii capsules (align resistance formula thus far) and I started taking a multi-enzyme supplement with food. That combination helps with my symptoms quite a bit. Then I started drinking GT's gingerade kombucha, 16 oz a day spread out a few glugs here a few glugs there, which also has live and active s. Boulardii plus other probiotics and ginger to help with inflammation. I thought that was stuff was gross at first but it's calming down my system and giving me a little charge, so I've come to like the taste and look forward to it. Also still taking the capsules three times a day. Definitely not cured but my symptoms are much milder, like the germ is not able to proliferate as aggressively. I still need to see a doctor who will put me on the path to an FMT, and don't recommend doing probiotics instead of getting professional help. But really took the edge off for me and it's so far kept me from ER, so I wanted to share.

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I think a lengthy bout of c diff forever changes the gut. When my husband’s doctors exhausted all antibiotic options, they prescribed cholestyramine powder. He started with a high dose and gradually tapered off. Finally, his diarrhea subsided. Now when his gut over reacts to something, he goes back on a very low dose and it helps a lot.

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chatticathi | @chatticathi | Feb 22, 2022
In reply to @guthealth "Please see my other posts about this. It is not just taking antibiotics but also preventing..." + (show)
@guthealth

Please see my other posts about this. It is not just taking antibiotics but also preventing relapses through eating proper diet post antibiotics that does not produce inflammation or allows the bad bacteria to return. I took four rounds of antibiotics and it was not until I changed my diet that I stopped relapsing. Can’t emphasize this enough. Since I changed my diet, I have gained seven of the twenty pounds I lost in three months and (knock on wood) have not experienced diarrhea in twenty two days. I could see improvement within a week of starting to work with a nutritionist. I was clueless and so was my GI doctor.

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What is your diet

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chatticathi | @chatticathi | Feb 22, 2022
In reply to @pines "@losthope I certainly know what you're going through. I too took Clindamycin in April for a..." + (show)
@pines

@losthope I certainly know what you're going through. I too took Clindamycin in April for a sinus infection. Two weeks later, I was diagnosed with Cdiff. I did 10 days of Flagyl. Five days after finishing the drug, Cdiff returned. I then did 10 days of Vancomycin. Again, within a week of finishing Vanco, Cdiff returned. I then did the Vanco pulse and taper for 5 weeks. I felt great for 3 weeks after finishing that round of Vanco. Then my 4th bout of Cdiff hit. It was the hardest and I lost 10 pounds in two weeks. My first stool sample came back negative so I had to wait another five days before we did another sample which was positive for Cdiff. Having FOUR bouts of this, I knew I had Cdiff even when the sample was negative. I then took the expensive med Dificid (fidaximycin). 20 pills for 10 days and the cost was almost $5,000. My copay was almost $1,000. Thankfully, there was a fund that paid part of my copay. I finished the Dificid on October 26th. So far, so good. And I knock on wood every time I say that. If Cdiff returns for a 5th time, I'll do the fecal transplant. I've looked in to Open Biome and doing the capsule form. The cost is $635. I haven't discussed this with my gastroenterologist and hope he would approve. I just pray that I'm on my way to good health. Are you doing the pulse and taper with vancomycin?

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What is pulse and taper I'm on number 6 C diff 5 * in 2021 I'm 75 years old and every time it's Vancomycin which I just did for six months I got off it I was fine two weeks later which is now I got the poops again and I'm back on the Vancomycin tomorrow I start the dificid for 10 days which I remember I had in the hospital last year that didn't work my mental state is in the toilet along with the poop I've had ulcerated colitis since 1970 and here we are I just now consider the transplant that's disgusting is that sounds to me my doctor told me yesterday no way he didn't even know where to do it or who does it I said I know more than you do because Mayo Clinic does it in Jacksonville Florida and I live in Tampa when it gets down to it I probably chicken out but I've had so many colonoscopies it probably wouldn't matter to me I'm just thankful I don't get the pain anymore but it does just squirt out of me I've lost 65 pounds since December 2020 you know I was a chubby bubby I had no problem eating but those days are over I'm keeping this weight off doctor says there is no other medicine for me I don't know if I should change doctors I've been with him for 6 years I think I probably said enough I got a lot of information from from Mayo I've always come to Mayo to educate myself but I just found out about this website a few days ago and I love it God bless you

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1 reply
pines | @pines | Feb 23, 2022
In reply to @chatticathi "What is pulse and taper I'm on number 6 C diff 5 * in 2021 I'm..." + (show)
@chatticathi

What is pulse and taper I'm on number 6 C diff 5 * in 2021 I'm 75 years old and every time it's Vancomycin which I just did for six months I got off it I was fine two weeks later which is now I got the poops again and I'm back on the Vancomycin tomorrow I start the dificid for 10 days which I remember I had in the hospital last year that didn't work my mental state is in the toilet along with the poop I've had ulcerated colitis since 1970 and here we are I just now consider the transplant that's disgusting is that sounds to me my doctor told me yesterday no way he didn't even know where to do it or who does it I said I know more than you do because Mayo Clinic does it in Jacksonville Florida and I live in Tampa when it gets down to it I probably chicken out but I've had so many colonoscopies it probably wouldn't matter to me I'm just thankful I don't get the pain anymore but it does just squirt out of me I've lost 65 pounds since December 2020 you know I was a chubby bubby I had no problem eating but those days are over I'm keeping this weight off doctor says there is no other medicine for me I don't know if I should change doctors I've been with him for 6 years I think I probably said enough I got a lot of information from from Mayo I've always come to Mayo to educate myself but I just found out about this website a few days ago and I love it God bless you

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Pulse and taper is taking Vanco over a period of time and you lower the amount you take each day. You might start with two or three a day and then go to one or two daily. And then the next week you go to one a day and then start skipping a day. But that didn't work for me. Two weeks after ending the pulse and taper, I had my 4th bout of Cdiff. The only RX that worked was taking Dificid after my 4th bout. It was terribly expensive but it worked. It's also important you take a good probiotic every day and one with Saccharomyces boulardii. (SB) It's the one probiotic that is resistant to the acid in your stomach and works in the colon where you need to get some good bacteria. I've gone through 4 back surgeries and 2019 and my 4 bouts of Cdiff was worse than going through back surgery. And it started from me taking Clindamycin for a sinus infection. They should take that RX off the market. I had another friend who got Cdiff after their dentist gave it to them prior to a root canal. She took Vanco which didn't work and then took Dificid which did work for her. She is the one who told me about Dificid.

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kaylasills | @kaylasills | Feb 23, 2022

Last visit to gastro was told of infusion that keeps cdiff from reoccurring. Bezlotoxumab injection. Fecal transplant sounds disgusting but will change your life. My gastro doc did mine.

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chatticathi | @chatticathi | Feb 23, 2022

OMG, thank you for your I don't know what to call it, passionate, knowledgeable reply, thank u, thank u, we're all in this together, I always always go to mayo to educate myself on any procedure, BUT, last week I discover the connect page, a lifesaver, and here I am, needed so badly, god has got me where I need to be, I have maybe 3 people I can talk to, bentyl takes away any cramps I get, I haven't had a movement in 3 days I still have 1 week of oral vancomycin to go and I started Difcid today for 10 days in the hospital this summer an infectious disease doctor came to see me and recommended a antibody infusion which I did over the summer, I'm still totally confused about the probiotics, is there anything you can pass on, mines 20 strains 50 billions cFU and I gotta go, I'm in sun city Florida, next to tampa,thanks for your reply

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cre8tive | @cre8tive | Feb 27, 2022
In reply to @sue6408 "See a your gastro Dr. you need another culture. C.diff. is hard to kill. It took..." + (show)
@sue6408

See a your gastro Dr. you need another culture. C.diff. is hard to kill. It took 3 rounds of different antibiotics to get rid of it. The 2 x times it came back the symptoms were a little different. Or you are negative and your gut needs to heal.

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So are u saying you did finally get rid of it after 2 reoccurrences? I’ve been terrified that now it has come back, I’d never be able to get better without doing FMT. It would give me hope to hear that someone had recovered. Please reply.

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1 reply
lengel | @lengel | Feb 28, 2022
In reply to @cre8tive "So are u saying you did finally get rid of it after 2 reoccurrences? I’ve been..." + (show)
@cre8tive

So are u saying you did finally get rid of it after 2 reoccurrences? I’ve been terrified that now it has come back, I’d never be able to get better without doing FMT. It would give me hope to hear that someone had recovered. Please reply.

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I think it’s important to remember that while symptoms may return, it might not be c diff. Because c diff can cause permanent changes to your gut, the symptoms might be caused by something else.

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