New here and a man,hope I am not alone

[Jon]

Just was told that I have ic.My UR said that it may have been caused by previous surgerys.I am 63 years old.It started about three years ago when I had TURP sugery on my Prostate.This caused my bladder neck to contract,and I've had 5 surgerys to keep that open using lasers.My UR,and I might say this is the 4th one I have been too,that the inside of my bladder is a mess,a lot of ulcers.Waiting now to find out what my next step is,hope I hear soon,the pain is terrible.This is not for sissys.

[traceann]

I just wanted to say hello and glad you found the site! There is just tons of info here on diet, ect. --for men and women. I know you will find something useful and lots of support. And you are right, it's not for sissies, :) ! I have always been considered a "girly-girl", but I think if more of my friends knew what I have walked around with somedays, that opinion would change!!!

Take care of yourself, and keep on flopping about the site...just scads of useful stuff!

Tracey :)

[dancemomof2]

Welcome, glad you found us. Kep us posted as to what's up. There are several men on here.

[Imustpee]

Welcome Jon! Lots of support and shoulders to cry on right here.... :)
You are so right when you say this isn't for sissies..hahhahah.....if people only knew what having I.C. all my life has been like and the things I have had to give up..... :mad:

[Jon]

:) Thanks for the welcome to all of you.Tell me more about Elmiron.I think I would rather try that first,before them trying to coat the inside of my bladder with something.

[Imustpee]

There is a link here in the patient handbook on all the different types of medications for I.C... check it out...Elmiron has been a MIRACLE for me....I have had 35 bladder instills since July 2nd and what an amazing difference..I also take 4 capsules a day...

[Imustpee]

There is a link here in the patient handbook on all the different types of medications for I.C... check it out...Elmiron has been a MIRACLE for me....I have had 35 bladder instills since July 2nd and what an amazing difference..I also take 4 capsules a day...Elmiron is a protective coating for the bladder..

[traceann]

I take the Elmiron by mouth, 100mg 3 times a day. I just went on it about 2 weeks ago, and it works the same as the instillations, but obviously slower since it has to go through your system, and isn't introduced directly to your bladder first hand (that is MY understanding of it). I haven't had the instillation experience. The oral can take anywhere from 3-6 months to work (from what I have read and from what my doc has told me) and up to a year for "full" benefit, as I understand it. But, that was the route I wanted to go. Between the Ditropan (for the bladder/urethra spasms), the Elmiron and now the newly added Vistaril (antihistimine which my doc told me helps the Elmiron work, and it has anti-anxiety properties to it, which helps me sleep and only get up once or twice a night to us the bathroom, yipee!) and the diet-- as of today, I feel pretty good.

But everyone has different responses to the various meds out there, and there are probably (from what I gather on these boards) just as many combinations of them as there are people on them! :) For me the diet I am convinced has been a life saver and it is something I can do for myself, no doc required!

I know the rest of the "family" here will give you even more info and correct me if I am mistaken in anything, as I've said before it's a great community of people! Always tons of info here and there!

Take care, hope I helped a little :)

Tracey

[Imustpee]

Is Vistaril otc?

[traceann]

Nope, I got the rx from my doc after talking to him on the phone about it. And it's pretty cheap too, I only paid like 20 bucks for a 3 month supply! It makes me sleepy like Benadryl does, and the first few days I was groggy waking up, but that is going away now,a nd I have been getting some pretty good sleep (which I am soo grateful for, I was getting serioulsy loopy from lack of sleep!). I have been on it since last Thursday. So far so good! I had originally called the doc's office, told them what I wanted, and then he called me back, we discussed it, and that was when he told me he talked to a uro about it and thought we should give it a try. I take 25mg at bedtime and that's it, between my research and my doc's, he agreed at that dose too. He then told me that he'd read/been told by uro it helps the Elmiron work supposedly, so I was even more eager to give it try, since I had been taking benadryl at night after reading something here about it. I read about the Vistaril/Atarax here on the site at one of the Q&A's with the docs and he said he gives that and Elmiron to his patients. What could trying it hurt, and it was cheap! LOL :)

Tracey :)

[greghh]

Jon:

I'm a male and live in Indiana too. I was diagnosed with IC in August. I take Elavil, Visteril, and Elmiron. I'd recommend the Elavil for the pain. Do you think you have a doctor that will help with pain?

[Imustpee]

My family comes from Terre Haute...

[Babs RN]

Jon:
Welcome to ICN from snowy, yes snowy, high Desert CA! We're glad you're here!


Hugs,
Barb :grouphug:

[VickiB]

And another welcome from snowy, snowy Idaho!

No kidding, IC is not for sissys! If I had to choose between natural childbirth or a blow-out flare, I'd honestly have to give it some thought!

Vicki

[Sarojini]

Another welcome from Memphis TN :welcome:

Yeppers, IC is not for sissies at all!!!!!

I hope you can find the treatment (or combination of them) that helps you feel better soon. Hopefully you've read the ICN Patient handbook (http://www.ic-network.com/handbook) for lots of info on diagnosis, treatment and self-help strategies. there are lots of good tips there!!!!!!!

Take care and keep us updated!!1

[ICNDonna]

I'd just like to add another :welcome: to the IC Network from rainy Oregon.

I think trying Elmiron is a wise decision. For those who benefit, it's worth the wait. It can take up to six months or more to be effective so you will want to try other treatments in the meantime. You might talk to your doctor about trying an antispasmodic, such as anaspas or urispas to see if it helps. Pyridium or urispas can also be helpful, but do color urine and stain.

You'll want to give the IC diet a try as well. You'll find it in the Patient Handbook. Some of us are helped significantly by that one step --- and nearly all of us have at least some diet triggers.

Sending warm welcoming hugs,
Donna

[Jon]

Wow what a nice group of people at this site.Thanks again for all of the info. :)

[traceann]

You are very very welcome! :)

Tracey