Help! Elmiron is going right thru me!

[Crzycatlady]

Elmiron causes constant diarrhea for me... for the last several months I have noticed intact Elmiron capsules in my stools.. I finally figured out that it was the Elmiron capsules and sometimes my thyroid and progesterone hormones (in capsule form). (I know it's gross.. but ever since I had blood in my diarrhea, I have to look:mad: )

My doc, who is wonderful but doesn't know anything about IC.. (she's horrid about my ic... she's been treating my other severe health problems,) simply tells me to take my hormones an hour before Elmiron... This does not solve the problem of how and why Elmiron is going right thru me. My pharmacist says the transit time is to fast.. my diet is horrible due to IC, severe fatigue and not having any help or money. COuld my diet be doing this?

I just read about the Elmiron study that 84% of Elmiron passes thru intact. Elmiron has caused some major side effects in me, and its possible it's caused some liver damage.. I even wonder about still taking it if it is doing this. Kinda a waste of the med and money if 84% goes right thru you.:rant:

SO has anyone else had this happen??? What have you done about it? I've been emptying my nightly 200 mg Elmiron dose into water, but it's nearly impossible to do the morning dose (100 mg) that way due to nausea. (I suffer from nausea most of the day, but mornings are really bad) This does explain a lot on why sometimes I have more pain.:loco: I don't have a doc to treat my IC cause of my insurance and I've had severe health problems that required more attention then my IC.... so I'm at a loss here.
THank you for any advice or help you can give me!!!
Jenna:angel:

[tigger_gal]

can you go to a uro that knows about IC? even if you have to get a referal it would be well worth the wait.. If you beliee it is the elmiron, stop taking it and see how you do. If things straighten out then you have your answer, it is the Elmiron. I wish I had anwers for you.. You also can call your insurance company and tell them you have IC and you need to know and be approved to go to a uroligst that treats IC. good luck.

[ICNDonna]

You might try taking the elmiron a little later in the day, perhaps two hours after breakfast. That way you might be able to take it outside of the capsule. Another possibility is to purchase some empty capsules from your pharmacy and empty the elmiron into a different capsule.

Donna

[Crzycatlady]

Thank you Tigger_gal and Donna...

I don't eat breakfast due to nausea... but perhaps if I take it a few hours after I get up? THat's a good idea! I'll try that.

I tried stopping the Elmiron, but I went into a flare, (even weaning myself off of it.)

Can't see a Uro right now.. I've been to a lot of them here.. and they are mostly horrid. They don't listen to me. I have other chronic severe health conditions which most doctors don't understand, so some of the treatments they tried for IC made my other health problems worse. I have a good Uro/Gyn, but I can't see her cause I have such a huge deductable on my insurance, and I am not working right now.. due to being fired from my job because of my fatigue and brain confusion. (due in part to IC) So, I can't afford to see the Uro. This sucks.. Healthcare in America is a joke!:cussing:

So.. I'm kinda by myself on treating my IC.

[Lisa_S]

Hmm... I have been getting what seems like mucus in my stools recently. I wonder if this is actually part of the capsules? Maybe I will try taking them in water for a while.

[Crzycatlady]

Lisa, that happened to me a few years ago.. and I was on Elmiron at the time. (I've been on it for several years) I did notice blood in there also on occasion. Have you had any blood in your stools? I would tell your doc about the mucus. I dont' know if it would be from Elm or not... Elmiron has so many crazy side effects.
:cat:

[Lisa_S]

No blood, but I have been having a lot of gas.

[Lynn15]

i've had those symptoms from elimron! it got so bad (and the elmiron wasn't helping my ic) that i got off of it. i had the mucous, painful gas, blood, and diarrea on an almost daily basis. i do have ibs, so that is part of it, but since getting off the elmiron 2 months ago, i don't have these symptoms, unless i eat something that really triggers my ibs. no blood though. that's kind of disturbing that this drug may cause bloody stools. as if we don't have enough to deal with with our ic!