This topic is about someone who found relief from chronic leakage after having an ileostomy due to Hirschsprung’s disease. They shared their journey and some helpful tips for others who might be facing similar challenges.

- The person was born with Hirschsprung’s disease, which caused severe constipation for many years. By the age of 77, they were taking a large number of laxatives and stool softeners daily.
- In late 2020, they began to lose bowel control each morning, and any reduction in medication stopped bowel movements entirely.
- A physician assistant suggested an ileostomy, and after completing all necessary tests, the surgery was performed in January 2021. The stoma was affectionately named “Bertie.”
- Five months after the operation, they were still experiencing constant pouch leakage despite making strict dietary changes and trying various barriers.
- A call to Hollister customer service was crucial. After measuring the distance from the stoma center to the nearby deep navel, it was discovered that the wafer edge was lifting over the old navel, causing leaks.
- Hollister provided a larger barrier/wafer, new barrier strips, and a moldable ring, all of which were Hollister products.
- With this new setup, they now only need to change the pouch twice a week, have no leakage, and have returned to a normal diet, though they still limit large amounts of corn, popcorn, and lettuce, with plans to test corn-on-the-cob later.
- They still experience intermittent rectal mucus discharge, humorously referred to as “alien turds,” because the rectum was left intact. The surgeon assured them this is harmless.

Additional insights and advice include:

- Leakage Solution: Measuring the stoma-to-navel depth or other skin contours can help identify why standard wafers might lift. Larger Hollister barriers, barrier strips, and moldable rings have solved chronic leaks for several users.
- Rectal Mucus: Leaving the rectum/anus in place after a colostomy or ileostomy often leads to periodic mucus discharge, which is normal and lifelong. Some people choose to have the rectum surgically closed to eliminate mucus, while others keep it open and empty it when needed.
- Swimming With an Ostomy: Many people with ostomies swim confidently. Suggestions include using standard pouching systems, wearing a spandex/lycra undergarment or wetsuit to hold the appliance close, choosing patterned or ruched swimwear, and focusing on personal confidence. For more details, members recommend checking specific resources on clothing and swimming with an ostomy.
- Lifestyle & Perspective: Many report life improving significantly after an ileostomy when long-standing bowel issues are resolved. Naming the stoma and sharing experiences can help build a positive outlook. It’s encouraged not to postpone activities like swimming, water aerobics, sitting in a hot tub, or traveling—an ostomy should not stop you from living life.
- Encouragement: Members offer best wishes, emphasize that every person with an ostomy has been through a lot, and celebrate finding the right products and routine that work for them.