Any nurses with Interstitial Cystitis?

Selke · Sep 22, 2006

I don't have IC, but a friend of mine does and it sounds like a miserable chronic problem. She recently found this doctor:

http://www.jmweissmd.com/

They offer a wholistic, mulitfocal approach to the problem. Maybe you can find a resource like this where you live? Good luck.

kranken_schwester · Sep 22, 2006

Hi,

I've had IC for pretty much my entire life. I'm a new nurse but have been dealing with IC for many years, at many jobs as well as in school, so here's my advice for you:

If you don't have an awesome urologist who is well-versed in IC, find one. Most uro's I've known either have no idea what IC is, or have heard of it but don't really understand it. You need to find a doctor who is knowledgeable and sympathetic, so if your doctor isn't, please keep searching.

Get an official letter from your uro stating that you have a chronic condition that necessitates frequent bathroom breaks. (I had to get such a letter in nursing school because we weren't allowed to take breaks during tests, and obviously that was not an option for me!)

My IC is much milder these days than it used to be, so I manage it through diet and drinking lots of water to keep my urine diluted. Some people have success with the medications Elmiron and Cystoprotek, and there are also Prelief tablets you can take with food that sometimes help reduce diet-related flares. Cold compresses can help too (though it's not especially convenient to hold a cold pack to your crotch at work...) as well as good old relaxation exercises. Some uro's recommend instillations of lidocaine or other meds, though I've never tried this myself as I don't think the pain of catheterization is worth the brief benefits. There's also Elavil and other tricyclic antidepressants for the pain, though the side effects have kept me away from trying that route.

Don't let anyone bully you around about your pain. IC is a silent disease, so while you may look fine from the outside, you know how much you are suffering. It's legitimate and depressing and you should feel free to tell

your employers and co-workers that you need certian accommodations in order to do your job effectively. It sounds like your IC is quite severe right now, but know that remissions do happen, and treatment can make a huge difference.

Check out http://www.ic-network.com/ if you haven't already; sometimes it really helps just to talk to other people who understand what you're feeling. Best of luck and I hope you can return to work soon.

babynurse1964 · Sep 22, 2006

Hi guys, thanks for the replies. I see an IC specialist in Greensboro NC, about a 2 hour drive for me and he has helped me a lot, but I still deal with extreme fatigue, and though I do regular bladder instills of sod. bicarb, lido, and heparin, I still have severe pain, and generalized pelvic pain.

I've been on disability for years, and want desperately to go back to work....there are so many issues facing me like possible refresher courses, and of course those ever frequent bathroom breaks, and needing to sit down. Home health seems to be the most ideal thing for me right now, I just have to be hired and hope for the best. My pain mgmt doc has written me a competency letter saying that I'm not impaired and that these are the meds I take legally with an RX as well as his number to be contacted if necessary.

The pieces are there, it's just a matter of "can I do it???"

Thanks for the help!!

ktwlpn, LPN · Sep 22, 2006

I'm new here and would really like to talk to another RN who has gone through what I have with IC, pain management issues, how you've been treated for your pain, and how do you go on and have a career with such debilitating pain, frequent urination, etc etc....if you stopped to read this post, I dont need to go on with the list of issues I deal with. Please let me know you guys are out there. I am out on disability right now and really miss doing the job that I loved so much!!
Thank you in advance, and nice to join such a wonderful forum!!
Sandy

One of my cats has just been tentatively diagnosed with feline interstitial cystitis.The vet tells me the causes and triggers are very similar to that in humans.Next week when the results of the U/A are back we'll decide what to do...They use buspar and amitriptyline in cats.Good Luck.It must be miserable-I 've had a few UTI's over the years and they are awful.I can't imagine this chronic misery.I know how unhappy my cat gets....