Worst Ostomy Experiences

I was on holiday with my wife, the first time away after my ileostomy and growing in confidence.

We were out in a restaurant, and I was feeling pretty good about myself! I had dinner and a little dessert; everything was going well, and I decided to have some apple juice.

Well, the sugar accelerated everything, and the next thing I knew was that the bag had detached from my skin, and output was very quickly approaching the outer barrier of my bag...

I had a big mess on my hands in the middle of the restaurant. Terrifying!

Thankfully, I was able to physically hold things in place while my wife and I made it back to our hotel room, at which point I spent a good 30 minutes cleaning up and putting on a new bag.

Thank God for barrier extenders; they absolutely saved me that day.

Worst experience

May 2025

First time flying since complete abdominoperineal resection with plastic surgery reconstruction following failed chemotherapy and 28 failed rounds of intensive radiotherapy for anal squamous carcinoma.

The plane had begun taxiing on the runway, we lifted off and were likely 45 degrees into the air and climbing when I felt my colostomy bag peel away from my skin. It was like one of those slow-motion moments where I could do nothing. In real time, the smell was instant, and I am guessing I had a blockage that was released by the change in altitude and air pressure. I have never been so humiliated in my life as everyone around me was holding their noses, pointing, jeering, and being nasty. It was staggering how many people had no compassion for a truly difficult situation.
I could not move until the fasten seatbelt sign was switched off, and we were located right in the middle of the plane. I walk with a stick, so trying to walk and cover myself at the same time was horrific. Thankfully, I had the sense to pack a full change of clothes in my hand luggage. The next hurdle was trying to get changed in that tiny area when everything was covered in feces. My anxiety was through the roof, and my blood pressure was not much better. Thankfully, an Italian air steward was amazing and allowed me to stay close to the washroom. Sadly, the same thing happened on the connecting flight, but thankfully not to the same extent.
Turns out the bags I had been given were not compatible with my skin type and were causing irritation and swelling, probably the blockage! The return flights home were uneventful because I had a suitable bag fixture and no longer had a blockage. I will never forget how the general public made me feel that day. I have no notion to fly again.

How terrible! I'm so sorry that happened.

People can be so cruel. One day they will likely have their own health issues and be on the receiving end. It's too bad that grown adults don't have more compassion. Would they have acted like that if a baby's diaper had come off in the cabin?

Don't let those ignorant people rule your life. Travel if you want to travel.

I have had a few "worst" experiences in my 50 years of having an ileostomy. I recently opened a new box of Convatec drainable bags, and several have had the side of the pouch by the drain come apart. This appears to be a manufacturing defect, and I am hoping it was isolated to a single lot. The last bag came apart as I was out shopping. Luckily, I was exiting the store at the time. I made it to my truck and back home to clean up.

I was in 7th grade and not “out” to any of my friends regarding my ileostomy. I sat in a toilet stall at school to empty it and completely missed the toilet. Yes, there were others in the bathroom. I let them believe I had a diarrhea catastrophe. As if being in 7th grade isn't tough enough!

Living with Your Ostomy | Hollister

The Producer. LOL 😂

So far I've had two worst experiences, I guess. One was when I was getting out of my car and the drain plug to my urostomy bag came out, pouring urine down the front of my pants! The other was going to lunch with a friend, and after ordering, I felt something wet - I went to the men's room and the front of my pants was soaked in urine due to a wonderful bag leak! I've only been at this for 4 months!