This puzzles me...

[MerryBerryMoose]

(I am not sure where this would go...this section seems the best fit)

...When I was first diagnosed with IC my symptoms were:

Sever burning
Frequency
Urgency associated with burning
Pelvic pain

Most trigger foods (chocolate, carbonated, caffine ect) bothered me. I couldn't ride in a car (it would agravate my symptoms). After a while I couldn't wear pants b/c the pressure on my abdoman was SO painful. The same followed with underwear (too much pressure on that general are--couldn't stand it).

I was put on Elmiron, Elivil, and Ditropan XL.

Took those religiously for about a year and my symptoms improoved greatly. Then I stopped the Elavil b/c of bad weight gain. My symptoms worsened for about 2 months then got better again. I then stopped the Dirtopan XL and Elmiron (cold turkey) becuase...well for no particular reason. Just did. That was in October. My IC is significantly better. I can eat whatever I want (spicy, carbonated, chocolate) but in sllight moderation. I can drink pretty much anything (except caffine--that always made me have to go). I am able to wear skirts, loost shorts, and some long PJ bottoms. Still no undies though

I still have mini flares after I ride in the car sometimes (burns for like 2 bathroom trips). But have not had a flare last more than 4 days in....months. My main symptom is slight frequency (3-7 bathroom trips daily) and occasinal burning.

Has anyone experienced this? Where they stop ALL bladder meds and get better. I am just at a loss because, from what I have read, when most ICers go off their meds they flare really bad.

Thoughts on this are more than welcome.


PS. I take a very high dose of Zegerid (Omeprazole/Sodium Bicarbonate) 40mg 2x daily for GERD/Bile reflux. I was told by my gastro. that was pretty much the highest dose. Could this be helping my bladder some how (since TUMS and Prelief can help with IC pain)?

[Trishann]

I am not trying to be negative but you might be doing more harm for yourself. It like taking antibotic and within a few days you start feeling better so you stop taking it, and low behold, next thing you know the sickness came back in full force, and then it is hardly to fight it.

This is something you will have to decide if you want to take a chance on it. I think most of us done that and then back on the medicine again. Whatever you decide I hope the best for you. I hope you are the one that don't have to take the medications.

Sending hugs, Trishann

[MerryBerryMoose]

I am not trying to be negative but you might be doing more harm for yourself. It like taking antibotic and within a few days you start feeling better so you stop taking it, and low behold, next thing you know the sickness came back in full force, and then it is hardly to fight it.

This is something you will have to decide if you want to take a chance on it. I think most of us done that and then back on the medicine again. Whatever you decide I hope the best for you. I hope you are the one that don't have to take the medications.

Sending hugs, Trishann

I understand the harm you may do by not taking an antibiotic through the whole dose term. But Elmiron, Elavil, and Ditropan Xl aren't antibiotics. I don't see how stoping a medication can hurt you. Given, I didn't do it the best way (which may hurt you--I don't know). I told my uro what meds I had stopped and he said if I am okay with out them I shouldn't take anything more than I really need (he actually was the one pushing to take me off the Ditropan XL and he was the one who took me off the Elavil a while back because of my weight gain).

Have you ever gone off any IC meds? And if so how long was it before you flared, if you did?

[lnseagraves]

Hey

I was on Elmiron for 9 months and then my doctor took me off it. Other than one hydro, that was all the treatment I got. I was doing REALLY well for about 1.5- 2 years after that and I didn't take anything except the occasional Uristat. Like you, I could eat ALMOST everything and as long as I stayed away from tight crotches and rough sex I was good.

I think I just have a fairly mild case, frankly, and maybe you do too. A few weeks ago, I went into a MAJOR flare and I'm still battling it now. I'm back to visiting my uro after a 1.5 year hiatus. Oh, well... such is life.

If I were you, I wouldn't go haywire off the diet. Remind yourself that you DO have that disease and its not likely to just disappear completely... but that said, I would enjoy your new found health while you have it. If there's one thing I've picked up from this forum, its that EVERYONE seems to have a major flare-up/ setback anyway... regardless if you were ULTRA careful. I would definitely stay away from any major trigger foods for you (for me, thats tomato sauce.. I haven't had a pizza or red sauce in YEARS ) But, I did eat chocolate, in small bits. I did drink soda. I did eat fruit and drink juice... I just stayed away from the REALLY high acid ones... Its a key of moderation.