how long does one live?

[crilewis]

I have had IC for at least 5 years now. I have two beautiful children. After my son was born i have been really sick. I was told i had IC. I had bladder byopsy in 1995. I have had two HD's since and a historectomy. I have litterly been under the knife every year since. I am tired. I have been on elmiron for two years now. It has seemed to help with the hunners ulcers, but the pain never leaves. I feel like someone is stabbing my ---every time i pee. I know you don't die from IC, but is it possiable to die from the side effects?
And how long do people usually survive before they lose there bladder?
feeling helpless,
and tired.

[ICNJess]

Hi welcome to the boards!

IC is tough to deal with, and it sounds like you are a veteran. I'm so sorry you are in so much pain.

Regarding "losing your bladder" I only know of a few who have gotten to end stage IC and needed to have a cystectomy. That was after trying all the treatments available that they and their health care team decided they might benefit from. I am glad you are seeing good results with the Elmiron.

However you mentioned Hunner's Ulcers, have you tried DMSO for those? Those are certainly painful.

Maybe you can find the right kind of combination of meds to help you to a remission. That is something to look forward to.

I wish I could help you with your pain, but I'm dealing with my own and really have no good strategies other than curling up in the fetal position and crying. lmao Seriously though, I do use a heating pads, and pain meds when they are available to me.

Hang in there, we're all here for you.

Hugs and love,
Jess

P.S. Regarding the side effects and death issue, I don't really know of anyone who has died from side effects of IC.

[auntiedeb]

Hi and welcome to the boards. You are not alone and there is life with ic. I haven't seen anyone die of the side effects from ic. There are treatments out there to help you.

[vm]

Welcome and so glad you found us. hi most people with IC do not lose their bladders. Some do end up having bladder removal, but I believe that is a very, very, very small number of people and they are people who have exhausted all other treatments.

Are you on any other meds besides Elmiron?

I bet that even just finding this board will help you somewhat. That feeling of isolation and not really having anyone who can truly relate to how you feel often gets much better once you are here and make new friends who have been there. Hope to see you around.

[Kelli]

Hello and welcome to the ICN!!! Sounds like you have been through a very rough time the last 5 years! A very small percentage of people have to have their bladders removed, I think it's something like 2%. I am wondering the same things some of the others have posted so far. Have you tried anything other than Elmiron to help with the IC? Alot of people with hunners ulcers find relief with DMSO treatments. There is also heparin instillations that help with pain. Now they can also instill elmiron into the bladder. I would also suggest getting a referral to pain management. There is no reason you should have to be in constant pain every day!!! There are also alot of medications out there that are not FOR pain that will help the pain. For instance there is Neurontin. It is an antiseizure med they use for pain and also depression. Several ICers have had luck with that particular medication. If you have any more questions, please don't hesitate to ask. As for your question if anyone has died because of the side effects..... I really don't think so. But, I could be wrong!!!

[ICNDonna]

Welcome to the IC Network. You'll find a wealth of information and support here. One thing I suggest you do is to read the information in the Patient Handbook at http://www.ic-network.com./handbook/ You'll find information there about the various treatments available, as well as the IC diet. If you aren't following an IC diet, I do suggest you begin right now. Some people find significant relief from just that one step.

IC is not considered to be progressive beyond the first five years. For me, IC did its progressing in the months before I was diagnosed. I was diagnosed in 1975 and in my 29 years since diagnosis, my IC has not worsened --- in fact, I do better than at the time I was diagnosed because I have found which treatment options work best for me and which foods and drinks are a problem.

I hope you find a successful treatment soon. And as you read the boards here, remember that for every individual posting that they are in pain, there are literally hundreds out there who are not posting because they feel good and do not need the support of the boards.

When you have questions, please feel free to post them. We aren't physicians and can't give medical advice, but are happy to share our own personal experiences.

Warm welcoming hugs,
Donna

[PPP]

Hello,

I have had IC for as long as I can remember...even way back in the 60's when I was a little girl...My mom was always hollering at me for peeing my pants, peeing on something, crying about my tummy aches, etc., etc.

It hurts, I know. But you have lots to help to make you feel better, your kids for starters. I sometimes really feel left out because I never could stay pregnant..that's another story.

I had been from one dr. to another for the past 20 years trying to figure out my pain, and I got my IC dx in July, 2003. Finally!

I started on anticholinergics--strong ones first, (ick!) and then down to Levsin .125 twice a day, Imipramine 10 mg every other day, and DMSO once a week. DMSO exacerbated my symptoms at first, but really started working after about the 4th week. My urethra became very irritated from the weekly catheters, so as of last week I am down to DMSO every two weeks. I still get irritation and a lumpy feeling on a daily basis, but I think the Imipramine is helping because even though yes, it does hurt and bother me it seems that it doesn't bother me as much in my head as it did before imipramine. Now the pills are causing gastric upsets so I am sort of stuck in a nasty decision of not taking them or taking them and prilosec.

Wouldn't it be wonderful if we could go back in time to the days when we felt good and nothing in our bodies hurt...There were days when I was praying to God that I could die but it didn't work. Guess there's something I have to finish in this world first.

Find a good urologist, one that works with you, not just you popping whatever pills he prescribes. I flat out asked my urologist for DMSO. He said sure. When I experiment with new prescriptions and they bomb, I call and get other things. One thing that really helped me in the beginning was Urised. Your pee will be the color of the tidy-bowl cleaner, and you will be really thirsty, but it does have a urinary analgesic and anti-infective in it.

I haven't really been watching what I eat. But I have read that bland diet is one of the major symptom relivers of IC. I also still smoke cigarettes but I am glad that I am down to only 3-4 per day now. I know I'll die from that before dying from IC!!

Maybe you could get a prescription for Lidocaine in that little tube--I have lidocaine before each catheter and it really helps for about 4-6 hours.

I think that bladder removal would be a bad thing. My mom doesn't have a bladder anymore. She had a cystectomy five years ago due to bladder cancer. She told me that if she had the chance to do it all over again, she would do anything to help save her bladder. She never had interstitial cystitis, though. She has problems with the ostomy bag falling off and then pee sprays everywhere. They have to use part of your intestines to create the drainage tube to the stoma, so she has problems with digestion and also an inoperable hernia at the site of the stoma. Poor Mom. But she still keeps her chin up.

Sorry this is such a long post, but you sounded so upset. Each of us finds our own way to deal and a good cry sometimes does work wonders. I think crying relieves the stress of being in constant pain.

I also like to walk because that helps with the pain. Even if you could only do 15 minutes because of the peeing, maybe you could work yourself up to longer walks and that really helps those muscle spasms. Don't shovel snow--I just did--we got 8 inches in Int'l Falls last nite--shoveling does not help ic at all. At least not for me.

Don't give up and don't give in even though it is sometimes sooo hard to see the good in the day when all you feel is pain. It will get better, you will find the right medication to help you. I describe the pain as peeing acid. But it will get better because you know what disease you are dealing with now.

Try different prescriptions, you will find something to help.

You can email me if you like.
Take care and relax any way you can.

PPP

[crilewis]

THANK YOU! Talking to someone who understands makes me feel a better. my mother is trying to understand my pain also. She doesn't feel i need so many surgerys. My mom is in her 60's and is totally healthy. I hope your mother now understands the pain you endered as a child since she now has her own complacations. I have heard from one other person who lost there bladder from something else that they wish they would of kept it.

My doctor seems to generally care for how i feel. We have tryed several things, i can't remember them all. I think i will try the lidocaine idea maybe that will help with the stabbing pain. Does it help you with the burning pain when you pee? I have stopped taking my vitamins. I have noticed that about two hours after taking them (my pee is really dark) that the burning sensation is worse.

I agree with you totally on the snow shoveling. I live in michigan. I have the same problem with running and fast walking. I feel all bloated and my stomach feels like its falling to the floor. toilet
If you have any other ideas for me on things you have tryed, i would love to hear about them.
And again thank-you. cristy

[Veronica]

Hi there! I know that on day's when the pain is really bad that many of us have wondered "how sick am I? What's going on in this body of mine?" but you have to keep going!

When I first got IC I felt like curling up and doing nothing, and I thought I'd feel that way forever! All that did was make me feel worse! Once I started getting on the right nutrition tract and incorporating a few exercises (example - gentle yoga, short walks) I began to feel more healthy, more in control.

Never, ever give in to IC. It's annoying, but you can get through every day! So many ICers on this board will help you thorugh the extra tough ones! You are not alone! We are all pulling for you and sending happy thoughts your way!

Veronica

[mayray518]

Believe me, I understand your desperation. I remember begging one doctor to remove my bladder after 5 years of torture but he refused to do it. Since then I have become pain free with elavil but I can understand the frustration if nothing is working. I have known a few people who have had success with the neo bladder (made from the intestine) but there are side effects from everything. I hope you find something to help.

[tillysav]

I'm newly dx'd and did not know there was an end stage. Are there stages or degrees of IC?

[ICNDonna]

To tillysav: Some of us have IC that is more severe than others. I'm not familiar with the term "end stage" --- I believe it is used when someone has very severe IC and hasn't found any tretments to help, leaving bladder removal as about the only option.

For the vast majority of us, IC stays about the same --- most will have flares at times --- and a very few need full time pain medications.

If you're doing fairly well with your IC and have your symptoms pretty well controlled, there is no reason to think you will get worse. Live with IC is not an easy journey, but most of us can anticipate that it will stay about the same.

Gentle hugs,
Donna