[Edit: 4 months out, possibly relapsing...]

Since c-diff is a disease of the "lower half", so to speak, we find that many of our members cannot refrain from discussing what comes out the bottom end. If you must do it, please do it here.
Elvish2
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[Edit: 4 months out, possibly relapsing...]

Postby Elvish2 » Fri Jul 17, 2020 11:28 pm

***Edit: I posted the below earlier today, but since then have had two episodes of urgency and M this evening, the most recent one just M with red/blood. Naturally, I'm feeling rather devastated and scared, and am pretty certain this means I'm starting to relapse (it feels like it). I have a message sent to my GI, but unsure if I'll hear back until after the weekend. I guess all I can do is wait, and I'm guessing I'll need to test and start medication again if it's positive. Does anyone have experience with taking Dificid again after a failed taper? I can't believe this is happening over 4 months post-Dificid :( ***

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Hi all,
Thought I'd post a 4-month update but put it here since I had a few potentially TMI-related questions.

I'm just over 4 months post-Dificid and doing generally fairly well, although I still have some ups and downs. My main lingering symptoms are gassiness and occasional M (usually in with a BM, occasionally by itself if I'm gassy on the toilet). This tends to stress me out as my main c-diff symptom was copious M rather than WD; however, ever since my first bout of c-diff in 2011, occasional M was kind of a new norm for me anyway sometimes. I remember reading some posts here saying that Benefiber or Metamucil was helpful in clearing up post-infectious M; does anyone have experience with this? I sent my GI a message about this and she recommended Metamucil 1 teaspoon a day in the evening, but I'm always a little hesitant to add something new into the mix.

I'm also still experiencing some of the on-off bladder pressure/irritation/pulling feeling sometimes - I'm assuming this is just part of the fallout from c-diff and Dificid, although I was hoping it would be entirely gone now that it's 4 months out. I did start taking 500mg D-Mannose daily a month or two ago (after checking with my primary care doctor), and I think it's been helping some. I also have started keeping better track of what I eat to see if there are certain triggers. The only one I've really noticed so far seems to be a certain Vitamin C supplement, oddly enough. Has anyone else experienced this, and found certain triggers or supplements that helped? In pre-pandemic days, I might have tried to get a consult with a urologist just to check up on everything, but of course seeing any kind of doctor is difficult these days. :/

Anyway, just hoping for a little feedback about dealing with lingering symptoms and anxiety several months into recovery! Has/is anyone else dealing with similar ups and downs months out?

(Forgot to say I'm also still taking 4 Florastor a day; I got the ok from my GI to cut down to 3/day, but I know from past experience this may cause some intestinal flareup, so I'm nervous about doing it, especially during an especially stressful upcoming few weeks...)
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

NanciT
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Joined: Thu Sep 18, 2014 12:01 pm

Re: [Edit: 4 months out, possibly relapsing...]

Postby NanciT » Sat Jul 18, 2020 10:00 am

Hi

I am sorry you are having a hard time. I have been on the site since 2014 with my original infection which last through 5 relapse but started with Flagyl then Vanco, Vanco taper, Dificid and then DIficid taper which finally worked. Jump forward to 2020 and I was diagnosed in march after taking Keflex. I am now over 3 months post Dificid taper.
I have only recently seen someone post they relapsed from a Dificid taper. It's something I have not seen on the site and I have been a moderator here since 2015. I don't think it's common, we have had many do well on a taper.
Even at 3 months out, I can tell you last time I had symptoms for months and still do. I also take D mannose which was advised by a Urologist I saw in 2015 after I had the terrible bladder irritation back then. I still take it.
I have good days and bad, nausea comes back, D does come back and that bladder pain is on and off. I have the experience from last time to know it took me months to recover.

Nothing is impossible, but I am hoping things are just off for you right now. My diet played a big role in recovery, I go back to eating bland when things are "off".
Hope things improve for you!
NanciT

Elvish2
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Posts: 69
Joined: Mon Jan 27, 2020 12:03 am

Re: [Edit: 4 months out, possibly relapsing...]

Postby Elvish2 » Sat Jul 18, 2020 11:43 am

Thank you, NancyT - I always appreciate your replies. We'll see how things shake out for me over the next couple of days, although I just can't really see how urgent M with blood could be anything but a relapse :/ I have been experiencing waves of nausea this time around, which I don't really remember being an issue for me before.
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

Bobbie
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Re: [Edit: 4 months out, possibly relapsing...]

Postby Bobbie » Sat Jul 18, 2020 2:18 pm

Elvish,
I doubt if you have c diff after all this time BUT I am not in the medical field. Try to follow the Three Day Rule. If it does not work, see your doctor.

We are here for you.

Elvish2
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Posts: 69
Joined: Mon Jan 27, 2020 12:03 am

Re: [Edit: 4 months out, possibly relapsing...]

Postby Elvish2 » Sat Jul 18, 2020 4:33 pm

Thank you, Bobbi. It's really helpful to have the support of people on the forum.

I got a stool test kit and will see if I can submit it this weekend, hopefully talk to my GI on Monday, and go from there.
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

Ali-Mar
Regular Contributor
Posts: 346
Joined: Sat Mar 21, 2020 4:17 pm

Re: [Edit: 4 months out, possibly relapsing...]

Postby Ali-Mar » Sat Jul 18, 2020 8:55 pm

Elvish , I am so sorry to hear you are having a bad day, I highly doubt you can relapse after 4 months. Based on CDC website most relapsed are 1-8 weeks after treatment. I relapsed after Dificid taper, but it was 2 weeks after completing the taper, i relapsed on July 4th and had FMT on July 14, 3 days ago keeping my fingers crossed.

My gi recommended Citrucel fiber 2 tablespoons per day, but started with one tablespoon and will add the second tablespoon after a week or so
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Elvish2
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Posts: 69
Joined: Mon Jan 27, 2020 12:03 am

Re: [Edit: 4 months out, possibly relapsing...]

Postby Elvish2 » Mon Jul 27, 2020 11:42 pm

Just updating this thread that I got back antigen negative/toxin A&B negative test results (although as mentioned in my concurrent thread in the Questions forum, I was a little concerned about the quality of the sample I submitted, but trying not to worry too much about that), as well as a negative stool test for Salmonella, Shigella, or Campylobacter, and a negative Covid test for good measure.

If all that's accurate, then I'm guessing I'm dealing with post-infectious IBS. Since the WD episodes on 7/21, I've just had a couple of small formed stools with what seem like bits of undigested food in them, until this evening when after dinner I had a large mushy/WD movement, again with some bits of undigested food (I've been trying to eat bland, mostly things like steel cut oats, brown rice, plain chicken...).

So that's spiked some anxiety in me again, and I'm probably going to need to figure out what I can take to help with these symptoms (Pepto Bismal, Metamucil [I just got some], Questran [I took this in 2011 as a chaser])... My stress levels are definitely through the roof lately with unrelated things, but I thought I was doing better until the WD this evening. Maybe I pushed it too much with a larger dinner.
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

NS789
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Posts: 65
Joined: Thu Apr 16, 2020 12:14 pm

Re: [Edit: 4 months out, possibly relapsing...]

Postby NS789 » Tue Jul 28, 2020 3:24 pm

Elvish, I'm so sorry to hear that you're not feeling well. You mention being quite stressed lately (understandably!). Is it possible that anxiety is making you run to the bathroom? Anxiety and IBS certainly go hand in hand. Perhaps some anxiety reducing options would provide you with some relief.

I, myself, am prone to anxiety that causes IBS. Lately I've been taking pure CBD oil every day and it has calmed down my bowels tremendously. I can't stop singing its praises.

Also, you seem to be taking a lot of Florastor. Maybe you could try cutting down on that a bit? In my experience, it helped for awhile but then I started having a lot of bloating and gas, and once I stopped taking it, I actually started feeling better.

You're doing all the right things by eating carefully and reaching out to your doctors. I just worry about your stress level. Take care of yourself. Stress can affect the body in so many ways.
32-year-old female. Diagnosed with C diff in March 2020. Prescribed Flagyl (10 days) then Vanco (10 days) then Dificid (twice for 10 days). Relapsed within 2 weeks everytime. Finished a 5-week Vanco taper on July 16th. Possibly relapsing again.

Elvish2
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Posts: 69
Joined: Mon Jan 27, 2020 12:03 am

Re: [Edit: 4 months out, possibly relapsing...]

Postby Elvish2 » Thu Jul 30, 2020 4:57 pm

Thanks for your comment, NS789 - my anxiety is definitely affecting things. It's hard to easily break out of the worry cycle, especially with all the other stressful things I have going on (moving, school, family issues, etc, not to mention the pandemic)! I do have a therapist, but it's only video visits at this time due to Covid, and connection issues tend to make that option kind of difficult.

Could you tell me a little more about CBD oil and the dosage you've found helpful? You're the second person to bring it up to me, and I'm thinking I should move forward and ask my doctor about it.

I just started taking Metamucil powder (starting with a very small dose) and want to see how that might affect things before starting to cut down on Florastor, but agree that too many probiotics could be the cause of issues.
2011: contracted c-diff after taking Amoxicillin and Cipro. Successfully treated with Flagyl taper. (Posts under old username, Elvish)

2020: contracted c-diff after taking Augmentin. Finished Dificid taper/pulse on 3/15.

NS789
Contributor
Posts: 65
Joined: Thu Apr 16, 2020 12:14 pm

Re: [Edit: 4 months out, possibly relapsing...]

Postby NS789 » Thu Jul 30, 2020 6:51 pm

Hi Elvish,

I currently take 0.5 ml of CBD oil but some people take a lot less than that and get relief. It's generally recommended that you start out small (even just 0.2 ml) and keep increasing over time until you feel relief.

I know a lot of people that take it just for sleep quality. Since I've started taking it, I've had some of the deepest, most restful sleeps. I have a couple of coworkers who literally only take a drop of it before bed and sleep well.

It's certainly worth discussing with your doctor. If you do a Google search, there's evidence that it helps with inflammation, IBS, anxiety, nausea, etc.

Take care.
32-year-old female. Diagnosed with C diff in March 2020. Prescribed Flagyl (10 days) then Vanco (10 days) then Dificid (twice for 10 days). Relapsed within 2 weeks everytime. Finished a 5-week Vanco taper on July 16th. Possibly relapsing again.

Ali-Mar
Regular Contributor
Posts: 346
Joined: Sat Mar 21, 2020 4:17 pm

Re: [Edit: 4 months out, possibly relapsing...]

Postby Ali-Mar » Thu Jul 30, 2020 11:39 pm

NS789, here is a stupid question; how do you normally take the CBD oil? Under the tongue ?
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

NS789
Contributor
Posts: 65
Joined: Thu Apr 16, 2020 12:14 pm

Re: [Edit: 4 months out, possibly relapsing...]

Postby NS789 » Fri Jul 31, 2020 10:03 am

Hi Ali,

Yes, the bottle I got comes with a little syringe and I just shoot the oil under my tongue. If you don't like the taste of it though, you can mix it in with a glass of juice or something. You can also get it in capsule form.
32-year-old female. Diagnosed with C diff in March 2020. Prescribed Flagyl (10 days) then Vanco (10 days) then Dificid (twice for 10 days). Relapsed within 2 weeks everytime. Finished a 5-week Vanco taper on July 16th. Possibly relapsing again.


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