post-op appt. questions

[berryjona]

so ... i got the diagnosis through cysto. yesterday i had the follow-up appointment. here's what happened:

1) he said the biopsy showed "chronic, long-term inflammation."

2) he prescribed elmiron, 200 mg twice a day. what do you guys think of this dose? said it should start working within a week (which i found odd since i've read it takes months to start working).

3) prescribed elavil to be taken at bedtime (can't remember the dose). i am so tired today i may have to leave work! :loco:

4) wants me on low dose of macrobid daily, as i have had bacteria in some urine cultures.

5) says IC is not transient, i.e. not a result of UTIs.

6) said to keep taking urimar t as needed.

7) said my bladder capacity was a tad small, could hold 400 (?) and the normal is 600. does anybody know what this means?

8) said pain from cysto should go away by about 2 weeks. well, it's been 2 weeks and i'm STILL having urethral pain!!! he said my culture was negative for bacteria, though. also -- this is really gross, but i've notice my urethral area is now WHITE, whereas it was not before (pink)!!! this really bothers me. *** is it??????? i have an appt. with my gyno next week, as i have been having chronic BV. maybe it is the BV? i think i'm going to ask her to look at my "area."

9) suggested i take prelief. what is it and how does it work?

10) suggested i eat a low-acid diet.
:help:

[snowbear83]

I just had my post opperation appointment. My biopsy showed inflimation witch my doc called trigonitis... i am nto sure what that is myself....he gave me elmiron 100mg a day... my doc told me to not be suprized if it takes anywhere from 6 months to a yr to start makeing any affect on my pain.... the told me that my bladder only held less then 300cc.....when ur bladder is fullt streached out it should hold around 600cc of fluid... it took me just over a month to full recover from my cysto/ hydro/ biopsy so 2 weeks is deffinatly not enough time to heal.

[vm]

Yeah, your gut was right on the Elmiron - it does take longer than a week. It's good you knew that or you might have thrown in the towel on that one too soon! :)

If you have BV it really could be affecting your urethra and bladder. Anytime I get a yeast or bacterial vaginal infection I flare right up.

With Elavil, I had a lot of daytime sleepiness the first several days, but that generally does get better.

[Katrina]

I have heard of docs saying that if you feel better in a week in can't be from Elmiron...I really don't know what your doc was thinking?!?!? That dose is perfectly fine and getting more and more common these days.

Elavil is often a successful medicine for IC...although I haven't tried it myself I am suspecting it may make you tired and that is why he says before bedtime.

We don't know why people get IC...there are quite a few cases where a person had very few or no UTI's previous to IC diagnosis. Non the less UTI's can dammage the bladder and cause long term problems for some of us. My guess is there are multiple causes of IC...and it probably takes more than one cause to get IC.

Bladder capacity a tad small....multiple possibilities...inflammation caused it, scarred bladder, or inflammation caused a slightly shrunken bladder are possibilities.

Prelief reduces the amount of acid in food which helps to reduce the amount of acid in your urine which makes it less painful to your inflammed bladder and helps allow it to heal instead of get more dammaged from more acid.

:grouphug: I hope that helps.

[Amyinagony]

I take Elmiron 200mgs twice a day too (along with a ton of other meds and instillations). It does take a while to work. Took around 9months for me. I hope it works faster for you. I take a med similar to Elavil called disipramine, and I take that at night time too. Wishing you well and I hope the treatment plan works for you.
Take care.