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Ellen: Interstitial Cystitis with Bladder Removal

Life after My Bladder Removal

My name is Ellen. I am thirty-seven and I was diagnosed with Interstitial Cystitis (IC) in 1993. Although during my whole life I have always had to go to the bathroom a lot, this is when the pain and symptoms really started.

To make a long story short, I was sent to several doctors who could not diagnose me. I thought I was blessed when I was finally referred to an IC specialist.

For four years we tried every treatment there was: DMSO, injections of elmiron in my bladder, taking it orally…so many kinds of treatments.

When I was twenty-seven, it came to a point where we all realized nothing was working, and all I was doing was taking medication to help mask the pain. My doctor did a cystoscopy to look inside my bladder, and also euro-dynamics to measure my bladder capacity. What he found was my bladder was the size of a golf ball, and only able to hold 25cc without going into extreme pain. My bladder had shrunk, hardened, and was ulcerated. There was nothing left to do but remove my bladder completely. In the process he took out my urethra, not knowing that ten years later there would be other options of diversion than just an "Indiana Pouch", which is a bladder made inside from large and small intestines.

I have a hole in my stomach area where I use a catheter to empty my bladder. The first two years I felt like I had my life back. I could hold up to 1000 cc, and I was pain free. That did not last long.

I slowly started getting all of the IC symptoms back, and today my bladder and pelvic area are very painful. I am having incontinence two to three times a night and during the day. I am back on elmiron and injection treatments, but am not showing any improvement. I am also taking heavy pain medications every day.

Once again, my quality of life has dwindled into almost nothing. I am unable to work. I lost my fiance, who could not deal with my situation, and am on SS Disability.

My reason for writing this is to share with you all that having a cystectomy is not always a cure. Eventually the pain, and the IC, might return. Right now I am just so frustrated because my doctor never told me IC could come back in the pouch! And he never told me I could end up with such terrible incontinence. I also suffer from chronic kidney infections.

While discussing options, I was told that there is not enough intestine to make another bladder, and my only option is to have the artificial bladder taken out, and have a bag worn on the outside. Because he took my urethra out, I have no option of diversion.

I am wondering if anyone has gone through a cystectomy, and if they are experiencing the IC symptoms again, and most of all, terrible incontinence. I want to get a second opinion. I do not want to wear an outside bag, although I do wear a leg bag half the time due to the leaking.

If anyone has any advice on my situation, and knows of another specialist treating this condition, I would love to hear from you. Thank you for taking the time to read this, and please feel free to ask me anything else you'd like to know.

I feel like I have hit a dead end. My quality of life is worse than ever. I would not wish this disease on anyone. I think you all know that feeling. Keep your chin up!

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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