IC struggler

[Susan Osborne]

Hello. I am new to this as of a couple of days ago. I have had IC for 5 years now. I am 29 and Im a school teacher in Orlando,Florida. My symptoms are frequency 24/7. I have retention at times also. I have been taking Elmiron 100mgs twice and day and have had about 6 rounds of bladder TXs. I have not had a hydro yet b/c I am afraid of the results. My doctor says he will do it when Im ready for it. I have tries ditropan, detrol, and sanctura. All of which put me into retention for about 24 hours. Not sure why they have that effect on me. Has anyone ever had that happen to them? Probably just me. I recently tries the bladder TXs with heparin in them. Out of the 6 week TXs, I felt good for about 2 weeks. Bummer. Anyways, now I just take it one day at a time.I have had to stop working out b/c of the discomfort. I feel I eat very well. I stay away fromall acidy food and still have flare ups. Annoying. Its hard to get through the days feeling like that. I know you guys can relate. Does anyone have any suggestions for me. Thanks

Susan :)

[Sarojini]

I had the retention side effect from Detrol, Ditropan, and the Oxytrol patch (transdermal Ditropan) too. It's fairly common, I think, and it is no fun at all!!

Have you checked out our patient handbook at http://www.ic-network.com/handbook ? It has a whole section on treatments, and there may be something in there that you haven't tried but would be willing to try in addition to your current treatment regimen.

:welcome: to the ICN!!

[July]

Just saying hello! I hope you find long term effective treatment soon. I have discovered that there are a few teachers on the boards with IC. I work in the schools as a speech/language therapist. I've often wondered if there was a connection with the tendency of educators to have to wait to use the bathroom usually during school hours and holding it for extended periods of time. We are not as free to use the bathroom at any time.

Thank you for all of your hard work with America's youth!

[kadi]

Hi Susan,
I am also a teacher:) I've had IC for almost 3 years now.

Which instillations did you have? I had 6 once a week DMSO cocktail instills in Summer 2004, which were somewhat effective (really rotten in the beginning, then better the last few), then for 2004-2005, I had them once a month on Fridays. They made it possible to keep working, but barely.

Last summer, I switched over to home instillations of Heparin, Sodium Bicarb. & Marcaine. I do these about every other day. You can see my other treatments in my signature. Most days I feel okay, though I'm having a bit more trouble lately due to allergy season...

Just wanted to send a hello! And hey, just 2 more months til summer!

[Susan Osborne]

Kadi, are you symptom free since you do the instills at hom eso often or does that just enable to live somewhat comfortable? My last TXs were the haparinm, marcaine, and sodium bicarb. not much help.

susan

[rosesitty]

I had a severe reation to atarax, which caused retention. Ditropan caused anxiety and low blood sugar.

[Susan Osborne]

Thanks everyone for answering. I thought about going back to the dsoctor and having my heparin TXs done one a week or month for maintanence. B/c they did help for about a week out of the 6 week TXs. Not sure if its a good idea b/c to be honest , im not sur eif I went into remission for that week or if it was the TXs. A little confused? What would you do? Also, other than whats on the sites, anyone know of good cany treats to buy or make. Sometimes i just cant help it and want something sweet.

susan

[BellaTutu]

:welcome: to the boards :D

[BigFig]

Thanks everyone for answering. I thought about going back to the dsoctor and having my heparin TXs done one a week or month for maintanence. B/c they did help for about a week out of the 6 week TXs. Not sure if its a good idea b/c to be honest , im not sur eif I went into remission for that week or if it was the TXs. A little confused? What would you do? Also, other than whats on the sites, anyone know of good cany treats to buy or make. Sometimes i just cant help it and want something sweet.

susan

Hi Susan and :welcome: to the ICN. In regards to good candy treats to buy, if you like chocolate try carob. I eat the carob malt balls and they help with my sweet cravings. You can find them at your local grocery store (if they have a health food section) or at your local health food store. You can also buy carob on line. Just remember, we are all different on what foods we can tolerate. I know quite a few can handle ice cream. I'm sure others will chime in with their "sweet" treats.

[Susan Osborne]

thanks big fig. i'll try that.

susan