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.
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