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