I was born with Hirschsprung's disease. My first enema was at a week old. I would go as long as 4 weeks without a bowel movement. By the time I was 60, my colon had no nerve endings so the only way I could have a bowel movement was with laxatives and stool softeners. At 77 I was up to 8 laxatives and 5 stool softeners nightly and that was just to have 1 movement. Then the fall of 2020, something happened and I had no control over my colon until about noon each day. If I didn't take the pills or tried to cut back, then nothing happened. Finally a wonderful PA I saw post hemorrhoid surgery suggested I have an ileostomy. I wanted to hug her. They ran all the tests necessary and in late January, 2021, the decision was made to have the surgery. I named my future stoma Bertie, a nickname my father wanted to give me at birth.
When I joined this group I was 5 months post surgery, with no success in preventing leakage. I was on a very special diet and tried different types of barriers, with no success. Then in August, my life turned around. One day I called Hollister to speak with customer service. After telling the wonderful lady my problem, she asked me to measure the distance between the middle of Bertie and the small hole that was once my naval. When I did, she said that my problem was the fact that the barriers I was using fell over the old navel and when I laid down, the barrier was coming up and causing leakage. She sent me a larger barrier, new barrier strips, and a moldable ring. Since I changed equipment, life has been great. I no longer leak and only change twice a week. Bertie is very happy. I'm back on a regular diet. The only foods I'm not eating are large amounts of corn, popcorn, and lettuce. Next summer I am going to try corn-on-the cob.
On another subject, I started having mucus balls coming out of my rectum. My home health nurse and I named them alien turds. They don't happen often but the surgeon said they will always be around. So don't distress if you feel like you need to pass gas.
I'm so thankful I had this surgery and that I get to spend the rest of my years with Bertie.