View Full Version : My IC Story

11-14-2010, 10:12 AM
Hi all: I'm Carolyn from southern Ontario Canada and have been suffering with this disease for better than 10 years now. I've had every pill. patch and treatment but to no avail. My last cysto was Friday November 5 with a Dr. Ken Peters at Beaumont Hospital in Royal Oak Michigan. He confirmed that my bladder is destroyed and has to go. I sought him out with the help of Jill Osbourne, for a second opinion. My Uro, Dr. Blair Egerdie in Kitchener Ontario, knew that I was doing this and wanted me to follow-up with him afterward. I have an appointment booked for December 7 and am going to book the removal of my bladder. But, boy am I scared. The last couple of years have been torture with this disease as I've never had any remission of any kind. I take Oxycodone regularly for the pain and that just takes the edge off. Tried MS Contin but the side effects were too great. As far as diet goes, I only eat "bladder friendly" foods and drink milk and water but my bladder reacts to everything probably because of the Hunner's ulcers.
I really need to hear from someone who has undergone this surgery as I need to know what to expect. I know everyone is different!:help:

11-14-2010, 11:03 AM
Hi Carolyn and sorry to hear of your problems, but perhaps it may be the answer. Check out the thread in the forum under end stage IC and bladder removal. You may find some consolation there. Good luck to you, and please keep us all updated. There are many here who are getting to the point you are.

11-14-2010, 02:41 PM
hi carolyn
where are u from? im from indiana and although am not having my bladder out i have severe ic too.i just had an appt w dr peters a few months ago.did u like him? he reccomended interstim for me. just wanted your thoughts on him

11-14-2010, 07:29 PM
thank you for your info. I have checked out that link but just wish there were more people talking about it............safety in numbers maybe. Sure need lots of input. Thanks again

11-14-2010, 07:42 PM
Hi Caillie: I'm across the border from Detroit in Windsor. Mu Uro is about 170 miles from me in Kitchener Ontario so wanted a second opinion. Met with the nurse practitioner first at Beaumont and she insisted I see Dr. Peters and I'm glad I did. He was very professional and personable--did Csyto in the office and didn't pull any punches telling me I was in "end stage" IC and he confirmed Dr. Egerdie's diagnosis. He did say that we could try the laser cauterization of my Hunner's ulcers but there are many and I would end up with my bladder being removed anyway. Not wanting to be put through any more surgeries, trials and maybe's I've made my decision. My biggest fear is that the PFP won't go away. I have no life now so need to get on with this and have it back.:hi:

11-15-2010, 08:02 AM
Hi Carolyn,

I had my bladder removed Jan 07 2010. I am really not the norm so PLEASE do not take what I say as if it will happen to you. I have an Indiana pouch, Continent Urinary Diversion

Normally after surgery you go the ICU for overnight or a few days. I spent 5 or 6 days in ICU because my kidney's were failing.

Hospital stay is usually 7-10 days. But again, I had many complication and ended up in there almost 7 wks. The first 4 weeks while in the hospital were a blurr so I can not really share a lot there with you.

There is tons of info in the bladder removal section here on the boards. I would encourage you to read all you can possibly read of them. I read a lot of them myself while waiting to have mine removed, which were very helpful Also IC member Judith has a world of information to share she had her bladder removed years ago.

IC member Mike just had his removed a few weeks back is doing wonderful. So, he has lot of info too.

Keep us posted. Many hugs and blessings to you. If you do have questions, I will try to answer as well as I can, you can ask me anything!

11-16-2010, 04:42 AM
Sorry I have not responded sooner. My bladder came out New Years Eve of 1986 and I am very happy that I had the surgery. I will tell you that everyone's experience is different but I can say the surgery can be rougher than just having your appendix out. You need to bear in mind that they are not only operating on the urinary tract but the GI tract as well. This means that for many people it will take time for your stomach to get back to normal as well, but don't despair, once you are all healed you will be so happy that you had it done. I am about to leave for work, but will write later when I have time. Glad you found us! Just keep in the back of your mind that you will be able to regain a life, that is the best part of all of this.:)

11-16-2010, 06:00 PM
I have also been to Dr. Peters. I was wondering if anyone had ever done a hydrodistention on you? May I ask what all your symptoms are? I know many people here have gotten their lives back after having bladder removal.

11-17-2010, 03:01 PM
I was never in the ICU after any of my surgeries, it really depends on the surgeon, your health, the hospital you are in, etc. When I converted from my ileal conduit to an internal pouch the surgery was 15 1/2 hrs long and they brought me back to my room though I was in recovery for a long time.

11-18-2010, 04:30 AM
I've had many hydrodistentions over the years. Not any luck with them either. Right now the question I have is; will the pelvic floor pain be reduced or gone after this surgery. It is my greatest fear that this pain will remain. My muscles are SO tight all the time that I can hardly stand or sit and it interferes with my bodily functions. Really need some hope to cling to. Did muscle relaxers ever help anyone? Am seeing my GP tomorrow so could ask for meds as I don't see my URO until December 7. Does this, also, effect the top of the legs and the back? Feel like everything is just ballooning.............:pray:

11-18-2010, 12:11 PM
Unfortunately there is no way to tell before surgery if it will work. I can tell you that many people have a relief of their symptoms to some extent. You should ask your uro/surgeon what they think the chances are. My main problem was frequency as well as some incontinence,so once the bladder was out those problems disappeared. I did at times have urethral pain and as soon as the urethra was removed the pain from there was gone as well.