Likely relapse. However,...

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DaveMal
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Likely relapse. However,...

Postby DaveMal » Sat Jun 27, 2020 5:47 pm

Greetings to all the beautiful people on this forum!

I'm a 39 year old male who developed CDI twelve days after completing a course of Clindamycin. Can you believe it!? Just over three weeks later I got the lab results and was prescribed a ten day course of Flagyl (500mg X 3 per day) by docs at a local urgent care. I know now that Flagyl is no longer recommended by the experts, but it's what I had started so I took it and symptoms improved significantly and residual discomforts continued to subside for the first few days following completion.

The last pill was taken Saturday morning and things seemed good until Wednesday evening, when all hell broke loose again. I'm certain it was a relapse given the symptoms (frequent uncontrollable WD, pains returning, racing heart, etc.). Perhaps from remaining vegetative bacteria and/or newly germinating spores. I have an appointment with a gastroenterologist but they're booked out for weeks, and I'm in the process of finding a PCP. So I returned to urgent care and received additional Flagyl. However, things seemed to begin settling a bit, so I've put off taking it for now. Things aren't normal but have been pretty calm since this morning, and I actually have some appetite back. It may come roaring back, but I'm hoping that I may have a chance of fighting off what's left without carpet bombing my gut again.

I would love any opinions you would care to share about my situation. I've been reading a lot while lurking on the forum, alternating between relieving and fueling my anxiety ;-) But my mind is a bit mush right now, so I beg your forgiveness for any redundancies or ignorance in the following questions I would like to throw out there:

1.) Do you know of cases of CDI or recurrences with full force onsets that were able to be fended off without additional antibiotics?

2.) Is there much risk to further damage of the colon if severe pain is not present?

3.) Is it possible that this episode could be something other than relapse, despite the violence of the onset? (The likes of which I have never before experienced, even from some other rather nasty "stomach bugs")

Any insights or advice you feel like sharing are appreciated. Peace and health to you :-)

David

P.S. Clindamycin is the DEVIL!

roy
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Re: Likely relapse. However,...

Postby roy » Sat Jun 27, 2020 6:36 pm

Flagyl still resolves symptoms but has quite a high relapse rate, probably 6 out of 10 dont relapse after one course.
A second round of flagyl has a very high failure rate though.
Go back and insist that Vanco or Dificid is used this time if you need more treatment.

Meds dont 100% clear c.diff, when you come off meds it's a race to regrow between good bugs and the c.diff.
While that race is going on there can be a return of mild(ish) symptoms.
That's where the 3 day rule comes in ( unless symptoms are hard and fast)
If the good bugs win and overcome c.diff the remaining symptoms resolve and the cure completes

The colon has very few pain receptors, pain is not the best indication of damage.
c.diff can cause damage without much pain being felt,
If frequent watery D returns or you pass bloody stool seek help.

D1dad
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Re: Likely relapse. However,...

Postby D1dad » Sat Jun 27, 2020 10:31 pm

I’m a flagyl club member as well. I got 10 days at the ER and then another 7 at urgent care when that didn’t work. My relapse was similar to yours, although it wasn’t really a relapse. More so the first 10 wasn’t enough. The next 7 did work but it took months for my gut to recover from the flagyl itself. That stuff is pure poison. If your blowing up the throan and or passing blood or running a fever, then I’d probably take the meds. Hopefully you won’t have to and your body will win out.

Bobbie
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Re: Likely relapse. However,...

Postby Bobbie » Sun Jun 28, 2020 12:01 am

DaveMal,
Welcome to the site. Pls read the first forum for the site's history and the rules of posting.

Clindamycin is a big c diff offender although many antibiotics can also be implicated. There are lists on the site of antibiotics most and least likely.

Try the three day rule.

Remember, the three day rule is not medical info but a rule of thumb to help get through the wait, watch, and worry stages of c diff. It is not "medical" but a rule of thumb that can be helpful.

The Three Day Rule: Don't be alarmed by mild symptoms unless you have three "bad" days in a row or if your symptoms become drastically worse. If this happens, call your doctor. Again, remember, this is just a guideline to use when you panic after one or two bad days and think, "Oh, IT'S back."

You are articulate and well informed.

Again, welcome to the site. We are here to support you.

DaveMal
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Joined: Sat Jun 27, 2020 1:24 pm

Re: Likely relapse. However,...

Postby DaveMal » Sun Jun 28, 2020 7:35 am

Thank you for the replies roy, D1dad and Bobbie. My anxiety is insame at the moment and I'm constantly second guessing myself. I won't be surprised if I end up needing more treatment, but I'm tired of taking drugs and feel I'm caught in a vicious cycle. Thank you roy for encouraging me to insist on better options. I had planned to discuss options with the urgent care doc, but spoke to him only ten seconds before he went to review my chart. Never saw him again before the assistant showed me out and I was exhausted and didn't feel comfortable making demands. I regret not doing my due diligence and finding a primary care doc. Maybe that would provide a better opportunity to better express my concerns, I don't know. I do have a practice I plan to contact tomorrow to set up a first visit.

I like the three day rule. I'm only worried because of the severity of the first 24 hours of my assumed relapse (no blood though). It has been about twenty hours since anything has happened, so I try to remain calm and see what may come and remind myself that whatever happens there are options. Thank you for the support everybody. And thank you to all those who have shared your stories, including many who have had experiences far far more harrowing than mine. You give us hope that whatever the course, there will be an end :-)

About to go to work now. I''ll check in later. Peace to you all.

David

D1dad
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Re: Likely relapse. However,...

Postby D1dad » Sun Jun 28, 2020 8:31 am

If your not taking florastor you may wanna give it a try, it’s worked for some and almost, almost worked for me the first time before I had to take meds. If you’ve gone twenty hrs that’s a good sign. I know when I had it I could wait 20 seconds at times. Best of luck and I totally understand. I’m on bactrim right now and am pretty much freaking out. I’m 15 months out from the hell but my worst fear of having to take an antibiotic came to fruition.

Bobbie
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Re: Likely relapse. However,...

Postby Bobbie » Sun Jun 28, 2020 11:51 am

DavidMal,
Anxiety is a hallmark symptom of c dif. Don't beat yourself up over what you haven't done but congratulate yourself on what you have done.

ER docs are a bandaid for a temporary problem. If your symptoms continue, see a GI or an ID.

NanciT
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Re: Likely relapse. However,...

Postby NanciT » Sun Jun 28, 2020 3:18 pm

Just wanted to add as Bobbie and Roy have mentioned, try to get an alternative medication from the Urgent Care center if the D continues. I would ask for Dificid, if that's a NO due to cost then Vancomycin.

I also would be looking for a GI, call around or possibly ask the Nurse at the urgent care center if she can recommend a good GI, they have all that info. Then make an appt with one.

Hope you feel better soon

NanciT

DaveMal
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Joined: Sat Jun 27, 2020 1:24 pm

Re: Likely relapse. However,...

Postby DaveMal » Sun Jun 28, 2020 6:45 pm

Thank you everybody for your messages! It really does help to get your feedback.

I am taking Florastor. Began taking it while I was waiting for the lab results, desperate for some hope of relief. It definitely seems to help me by at least tempering the severity of pain, discomfort, and smell. I also began taking an extra strength Culturelle a few days into my course of Flagyl. Whatever little bit I can do to maybe possibly help my friends fend off the baddies. it sure is getting expensive though.

I am full of regrets, but have been working on not dwelling on them, but accepting what is and learning from my mistakes and applying the lesson for a better future. The original infection for which I was prescribed the antibiotics (5 days Amoxicillin then 10 days Clindamycin, ugh) was caused by me eating like an idiot. I also have a history of alcohol abuse, which itself has compromised my gut in the first place. I can't afford to play these stupid games anymore. Sorry if I'm oversharing. These thoughts weigh on my mind these days.

I do have an appointment with a gastroenterologist July 16th which I'll keep no matter what happens in the mean time. I started making a few notes regarding what I want to ask so hopefully I won't forget any pressing concerns. I plan to choose a primary care physician as well.

Things below seem to be going south. If this trend continues and it's WD tomorrow I think I'll go ahead and call the urgent care and ask to speak to a doctor about ordering a different prescription. I'm dreading the call. I'll feel like I'm being a nuisance, and I suspect they'll feel the same. I hope they are receptive to my request.

D1dad hang in there. Remember this time you're doing your diligence in reducing the risk as much as possible. And in any case, you're informed and prepared for action now :-)

Sorry to ramble on in my posts, I don't plan to make a habit of it. You're all very kind and helpful, thank you!

David

Caligirl
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Re: Likely relapse. However,...

Postby Caligirl » Mon Jun 29, 2020 12:43 am

I had a HORRIBLE bout of c diff a little over a year and a half ago (seriously had to go to the ER in the middle of the night because the D was so bad that it put me into labor). I was prescribed 14 days of flagyl. I ended up relapsing but I’m not sure if I would have if I didn’t have to take a round of antibiotics again (infection during labor). That time I got Vanco for 10 days. A week after I finished treatment it came back. Some people say “oh it could be PI IBS”, no. This was c diff, I’m 10000% sure. But I decided to wait it out and thankfully my body was able to fight off the infection itself without treatment, and I haven’t had any issues with it ever since. Each situation is different, but I am thankful that my body was able to fight it off so I didn’t have to destroy even more of my gut flora with another round of antibiotics.

If it was me and your symptoms were getting better, I would continue with florastor and eat mild foods and see what happens. And as others have said, insist on Vanco or Difficid, you are your best advocate.

DaveMal
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Re: Likely relapse. However,...

Postby DaveMal » Mon Jun 29, 2020 9:21 am

Things are not good. My urgent care refuses to order anything for me. I'm going to try to call the GI office to see if I can speak to him. I might just have to take the Flagyl again. I can't just let this bastard destroy me while I wait. Unless anyone has another suggestion?

David

NanciT
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Re: Likely relapse. However,...

Postby NanciT » Mon Jun 29, 2020 9:44 am

If symptoms are persistent on the Flagyl I would try the GI first, or go to an ER, a different urgent care and explain the situation. CDIFF can cause dehydration and other issues and needs to be treated. I am sorry the MD does not want to help.

My advice is go somewhere else. The GI may get you in sooner if you have a chance to explain where you are at. Start there and move on if they cannot get you in.
Many doctors are doing video calls, the GI may be able to do that and then you can explain. That would be the fastest,

Good luck and let us know how you do.

NanciT

poppy86
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Re: Likely relapse. However,...

Postby poppy86 » Mon Jun 29, 2020 11:31 am

I also think vanco or dificid would be much better options. I hope you're able to get through to a doctor soon and start feeling better right away. Wishing you a speedy recovery.

DaveMal
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Joined: Sat Jun 27, 2020 1:24 pm

Re: Likely relapse. However,...

Postby DaveMal » Mon Jun 29, 2020 12:23 pm

Two weeks of Flagyl it is. Wish me luck!


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