6 months c-diff free, painful bladder symptoms persisting

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

6 months c-diff free, painful bladder symptoms persisting

Postby Elvish2 » Wed Sep 23, 2020 3:54 pm

Hi all,
At this point, I'm 6 months + 1 week out from finishing Dificid (hooray!). I had a colonoscopy at the beginning of this month that came back clear of any signs of UC or residual damage from c-diff, so that was a relief. Basically any M flare-ups I've had can be explained by stress-induced IBS at this point. I still have some symptoms like gassiness, but nothing too terrible.

What I've been having more ups and downs with, however, has been continued bladder-related symptoms. I've mentioned this before on the boards and done some searching, and started taking D-Mannose, 500mg/day, for the past several months (okayed by my Primary Care Physician), although not always consistently. This seems to help some, but because there's some delay in symptoms flaring up when skipping D-Mannose or eating potentially triggering foods, it's hard to say how much or what exactly helps or triggers. Some days I feel fairly normal; other times (like recently) I have discomfort/pressure whenever my bladder is at all full, and worse when I sit down, bend over, strain at all when going to the bathroom, and (sorry if TMI) have sex.

I had a video appointment with one of my PCPs about a month ago, and she agreed with my main PCP that it sounds like "bladder spasms"/painful bladder syndrome - I wasn't exactly clear if that was along the same lines as Interstitial Cystitis? She prescribed Elmiron to take short-term, and told me that I should know within a week or so if it was helping, and we could go from there re: a urologist referral. I wanted to wait until at least after my colonoscopy to start it, and as yet haven't started it due to all the listed potential side effects and conflicting things I've read about length of time needed on it. :/

I guess my question is, has anyone else dealt with developing painful bladder syndrome (using this as a blanket term) after c-diff, and having it persist for many months? And what has helped you? I'm thinking of messaging the PCP to see if I could get a urologist referral without taking the Elmiron first. As you all know, it's especially hard and exhausting to get answers lately when in-person visits are avoided if at all possible. Research has showed that a combination of D-Mannose, careful diet, and antihistamines should help, so maybe I need to get more serious about trying all of those consistently.

Thanks for any advice or resources you can point me to!
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
Long Time Contributor
Posts: 2811
Joined: Thu Sep 18, 2014 12:01 pm

Re: 6 months c-diff free, painful bladder symptoms persisting

Postby NanciT » Wed Sep 23, 2020 5:45 pm

Hi there

There are MANY of us on the site that ended up with painful bladder issues post Vanco or Dificid. I see a Urologist and I highly suggest seeing one and explain the medications you took. I actually went to "Drugs.com" online and printed out the side effects of both medications. My urologist was surprised but put it in my chart it was clearly an irritant. It took a long time, I was sent to PT for Pelvic Floor Dysfunction and that did help.

I tried several things including a heating pad and Quell which is a tens unit and that helped me the most(Quellrelief.com). As far as medication, please be careful. Look up ELMIRON before taking. There are other medications but best discussed with Urologist.
I take D mannose, 4/day. Unfortunately I got a bad UTI recently and I am back in the battle with CDIFF again.
I had backed off the D mannose and I wont do that again.

If you put bladder in the search bar we have several threads on this. I will tell you I finally did get through it, although my symptoms have returned on the Dificid taper I am working through

Take Care

NanciT

Spike
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Joined: Sun Dec 08, 2019 12:20 pm

Re: 6 months c-diff free, painful bladder symptoms persisting

Postby Spike » Wed Sep 23, 2020 7:55 pm

I was also going to mention like Nanci about PT. When I went through active c diff I had horrible bladder problem that actual gave me the c diff from them trying to treat a bladder problem with antibiotic which I now find wasnt. The bladder issue got worse with c diff. It was my back all along. I am a PT myself and didn't even recognize my signs and through putting my heads together with another close PT and mentor we figured it out. So through some back manipulations and stretching routine I and now bladder free and dealing with aftermath of c diff that could have been prevented. Sigh in hind sight. So maybe find a good pelvic floor therapist and rule that out/in?

Elvish2
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Posts: 75
Joined: Mon Jan 27, 2020 12:03 am

Re: 6 months c-diff free, painful bladder symptoms persisting

Postby Elvish2 » Thu Sep 24, 2020 12:47 pm

Thanks for the insight, Nanci and Spike! I've definitely scoured the forum for possibly pertinent advice. Continuing to have to advocate for myself and do my own research (rather than just trusting the doctors) can be exhausting. But I'm going to push for a urologist referral (and hold off on the Elmiron) and see what happens. I'm in Southern California, so we're still pretty locked down here; hopefully I'll be able to get physical therapist appointments if that's needed.
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.

Elvish2
Contributor
Posts: 75
Joined: Mon Jan 27, 2020 12:03 am

Re: 6 months c-diff free, painful bladder symptoms persisting

Postby Elvish2 » Wed Oct 14, 2020 3:25 pm

Just a little update to this that I did get a urologist appointment for about a month from now, and I recently started a diet that's supposed to help with painful bladder symptoms to see if that helps in the meantime (I'm guessing the urologist would want me to try that anyway). Bladder symptoms seem to be easing off since starting, but the gassiness/occasional m has increased. I can't win! :| Dealing with it all had been exhausting and depressing, but I'm hoping for more steady days in the near future.

I'd like to start to ease off on the Florastor since I'm still taking 4/day, but know there will be some gut adjustments with that and hate to throw myself another curveball.
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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Joined: Sat Aug 06, 2005 8:00 pm

Re: 6 months c-diff free, painful bladder symptoms persisting

Postby Bobbie » Fri Oct 16, 2020 2:51 pm

Elvish2,

Sorry u are still having problems. You could have IC - Interstitial Cystitis. I developed it during my first bout with c diff. - and still have it. Do a search for UTI hints. One medicine (Elmiron ) has been linked to eye problems. See NancyT’s post. Mention this to the uro as I am not a doc.

Tylenol and heating pads have helped me the most.

Let us know what the uro says. Best wishes,


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