I Started with UC, Now I’m an Ostomate and Proud

Brenda EvesIntroduction:

53 years old, mom to two, diagnosed with UC in 2001; surgery 2005. Successfully living with an ileostomy. Willing to share my story with anyone who wants to listen :-) We can live successful lives after surgery. I am a proponent of the surgery.

My Story:

Diagnosed in 2001; surgery in June 2005 for sub-total colectomy. December 2005 I had an abdominal/perineal resection thereby removing all of my colon, rectum and anus. Did it hurt … hell yes. Am I doing OK now .. yes.I have had three subsequent surgeries for strangulated hernias. I now have some pretty expensive gortex mesh surrounding my stoma with the hope of preventing any further herniation.It has been a struggle; but there are good days; many many good days. The good now outweigh the bad.I believe a supportive network is essential to surviving while waiting for surgery; as well as a strong network post surgery. Family needs to know … this disease is horrible and it is genetic they say. So what is wrong with having a colonoscopy … it might save your life.

What works for some might not work for others so I believe that as ostomates we must connect with each other and provide as much support as we can.

We can beat this disease with the only option (surgery)

and come out stronger than we started.

Talk to your ET nurse often. They have tons and tons of info and supplies, tips that none of us might have thought of.Did you know that a liquid antacid (Maalox etc) can help calm excoriated, red and raw skin? Did you know that bananas help to bulk up your stools so they aren’t so runny?The only thing that I have found as a problem for me is exercise. I would like to be able to do leg lifts and leg presses but my gortex mesh keeps me from doing those kinds of things. I get very swollen and very painful after doing those kinds of exercises. I spent a week in the hospital after exercising too much last November. I had all of the symptoms of a blockage. At the end of seven days, a tiny blockage was revealed in my small intestine … lots of warm moist clothes over my stoma; no appliance on for hours at a time finally let the blockage through and I was healed.

written by Brenda Eves

submitted in the colitis venting area

5 thoughts on “I Started with UC, Now I’m an Ostomate and Proud”

  1. Had to drop by and say that I liked what you wrote. Everyone of us who has UC or now lives without their colon have their own ways or issues that they have to contend with and though it may seem tough I think it is a way better life than living with a full case of UC…good luck with all you do.

  2. I am on Remicade and so far it has not been very promising. You made me feel better about the inevitable. Wish the insurance companies would not make us go through all this crap (literally!)
    Thanks for your story and good luck!

    1. Remicade was one of the drugs I was on prior to my surgery; in fact, there wasn’t a drug at the time that I didn’t take. Sadly none of them worked. I gained almost 90lbs on prednisone; had serious reactions to immuran … the list goes on and on.

      Being Canadian it wasn’t the insurance companies that held me back from surgery, it was the constant wait lists. Finally, my body gave out and there was no option but surgery. I was in hospital a month, received six blood transfusions, and tried to get strong enough for surgery. On the table I bled out and again needed four units of blood.

      But God had better plans for me so here I am today. An ostomate and damn proud of it.


  3. Inspirational! I have had a roller coaster ride and can’t get off prednisone. Started 6mp thee weeks ago and see my Dr this Thursday. I’m going to ask for surgery in three months if I have no let up. It is really ruining my life. I am a registered nurse and will proudly have an ileostomy over this horrible disease. My wife fully supports me. How are you doing?

  4. Hi, I am doing well. I have now had my ostomy for 10 years and I feel so much better. I wish you success and wellness in whatever road you go down.

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