Thank you for visiting the ICN Support Forum. We are so happy that you found us! The ICN Support Forum is home to 50,000 patients who have participated in our 24/7 support system. However, to protect the privacy of our members, members of the public can not read posts unless you have registered first.
It's easy to register! Just click the "sign up" button in the upper right corner of the page. Make sure you use a correct email address because we'll send you an email to confirm that you are a real person!! We also screen all new applicants to verify that they aren't bots or spammers! If you have any problems, please feel free to send a quick email to: [email protected]!
I'm using Uracyst. It has changed everything. I haven't had a flare since I started on it in February 2011. I can eat more things without problems, but I do notice that the more I stray from the IC diet, the sooner I need to instill again. Still no coffee or chocolate or tomatoes for me, but apples, white chocolate, and fake coffee are definitely back on the menu again. I can also eat risky things once in a while without difficulty.
Uracyst is not available in the U.S. but you can purchase it without a doctors prescription in Canada and carry it across the border. The company can not mail it across the border though. You can either order it direct from the company or through a Canadian pharmacy.
Onset of symptoms: June 2010 Initial symptoms: No frequency or urgency, only pain! pain!! pain!!! Diagnosis: September 2010 Current status: Fabulous. I'm feeling 90% of normal.
Current Treatment
Gluten-free diet
TUMS and Prelief with acidic foods
Alkalinizing drops with acidic drinks
Elmiron for replenishment of the bladder lining
Dom-Oxybutynin for bladder spasm
Past Treatment
URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization
Just before I log off to go to sleep, I'll chime in.
I've had five instills with uracyst now, done in the hospital, so I don't have to pay for it.
The cath hurts like a bee, and my nurse doesn't use lidocaine or anything, so that's probably something you should ask for as a topical numbing agent.
I haven't noticed any difference for frequency or pain, but my urgency is SIGNIFICANTLY less!
21 years old
dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy
♥ looking for a way or medication to help stop spasms ♥
Hi I've been having this instill for past 3 months & slowly but surely it has been helping. Still flare but my bladder generally bothers me less. Hoping it continues to improve!!
Hi I've been having this instill for past 3 months & slowly but surely it has been helping. Still flare but my bladder generally bothers me less. Hoping it continues to improve!!
May I ask what symptoms it's been helping you with?
I'm hoping my instills will just help more over time
21 years old
dx: severe OAB, mild/moderate IC, depression, PTSD, agoraphobia, chronic fatigue, IBS, peripheral neuropathy
♥ looking for a way or medication to help stop spasms ♥
Polygon, you are right. That catheter hurts like a bee and it always makes my bladder spasm much worse for the next day or two. I've been wondering if the Uracyst helps but the catheterization hinders so I don't get the full benefit of the Uracyst. I'm going to try a lo-friction catheter next time. I wonder if it might help you as well.
Onset of symptoms: June 2010 Initial symptoms: No frequency or urgency, only pain! pain!! pain!!! Diagnosis: September 2010 Current status: Fabulous. I'm feeling 90% of normal.
Current Treatment
Gluten-free diet
TUMS and Prelief with acidic foods
Alkalinizing drops with acidic drinks
Elmiron for replenishment of the bladder lining
Dom-Oxybutynin for bladder spasm
Past Treatment
URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization
Hi Polygon- my main problems are frequency daily & both burning of the urethra & urgency when flaring. I didnt have issues with cathing at first but then had a different nurse who couldnt cath me for 20mins!!! Needless to say that instill did not work as well as my urethra stung & i flared for 2weeks afterwards!! Have had another instill with my original nurse since & cathing made me irritated for a few days but then I was able to go on holiday/ drank some alcohol & ate a few naughty things & hardly noticed my bladder. I do still feel my bladder some days- but it annoys me rather than making me feel stressed & depressed!! I do still have issues with sex though. Hoping it improves!!
Comment