a question about bladder removal

[jan38]

Hi. I have been reading some of your messages about bladder removal. Some of you have mentioned that you are in the end stages of ic. I have had it for about 7 years. Mine is at a moderate level. I was wondering does this disease get worse. Did you guys start out with severe cases or what level were you at. No doctor has ever told me what to expect in the future. I have just had a second bladde dilation and am on elmiron for a year. After that I don't know what to expect. I went for about five years with out any problems but lately I have been in a mess. I hope someone will answer by question. I will be thinking about you people who have to go through major surgery. It is to bad that most people don't even know what a bladder infection is let alone a terrible disease like this. Loving thoughts are sent your way. Take care. Janice angel

[dyno]

Janice,
I have been diagnosed with IC since 1974, and my IC has not gotten any worse. There are some cases that advance but I think the majority stay the same after the first few years. That is my understanding of it, if I am wrong I hope someone will jump in and correct me. Good luck and keep plugging away with your treatment.

Jolene grouphug

[ICNDonna]

Please try not to worry. Only a very tiny percentage of people with IC do get worse as time goes by. Most of the literature will say that IC can worsen during the first five years --- you are well beyond that point.

My IC was diagnosed in 1975 so I've had diagnosed IC for almost 29 years now --- and I have stayed about the same. I have flares at times and have had hydrodistentions at intervals during my years with IC.

If anything, I am better than at the beginning because I now know how to deal with my IC.

Sending a warm encouraging hug,
Donna

[Brea]

Hi Jan, I hope we did not scare you. I have had my IC for about 9 years,dx 7 years ago. My Dr tried to blame it on everything else before he would give me a dx of IC,,I have M.S. which affects my bladder too. I had a total hysterectomy and that didn't relieve any of my symptoms so he finally did the cysto's and biopsy to finally dx the IC. I also have cysts that are in my bladder that I was having removed every 6 months which would make my IC so much worse afterwards. my bladder capacty is only 90cc and is getting less and less as the cysts grow. And yes my IC started out not being to bad but that just lasted a year and has hit me with advenges every since. I haven't had any relief from it in over 3 years and for the last 6 or 7 months I have not been able to lay flat in a bed,,when I do and I go to move or get up it feels like the cysts are raw and stuck together and I can feel them pulling apart,so I have slept in a recliner for the last 7 months. So I think yours will probably stay the way it is....or I pray that it doesn't worsen. Hope you are having a pain free day.....Brea

[Judith]

Jan, I had IC all my life and was 30 when I finally had my bladder out. For me it got worse when I hit the teenage years and after I weaned my second child is when things got very bad. I had my bladder out when he was just about to turn 3. Very few patients need to go through the surgery. I would like to strress that I had my surgery 18 years ago, this was before Elmiron was in use, before there was Interstim or some of the other treatments now available. Who knows, maybe if I had those things available to me I may have not had have to the surgery. At any rate I am not going to beat myself up about what happened. I am very happy with the results, I am so thankful that I no longer have the horrible symptoms and that I can lead a normal life. Having your bladder out is not the end of the world, it is actually another chance to be able to live how you want to live. Judith

[Kara]

Janice,

To answer your question...For some people IC can get worse. But it usually relates to the bladder capacity (how much you can or can not hold). When the bladder is destroyed by IC and it gets too small to hold any urine, that is usually an indicator of what needs to come next. People who suffer from what we call "end stage IC" may need to consider bladder removal. It's up to your bladder's condition, how you feel daily, and the doctors that you see.

I hope that helps a little.

blink