With the week already off to a rocky start, I went to work Tuesday feeling pretty good. I’d finally been able to get a decent night’s sleep. I went into work early and started cranking out all the things I was behind on. Then, about 11:00 a.m. I felt an itch on my side.
In 1992 I had an ileostomy to remove my large intestines and rectum. They’d become so inflamed and covered with bleeding ulcers that there was no alternative. I remember refusing to sign the consent forms until one of the doctors came in, sat on the side of my bed, and calmly explained I was bleeding so much that if I cared to see Friday I'd let them do the surgery. It was a Wednesday, I think. Back then I didn’t know that my colitis, which at the time was called Crohn’s Disease, was actually colitis of Hermansky-Pudlak Syndrome.
Since then I’ve lived with my ostomy fairly well. While it’s occasionally very irritating, as it was on Tuesday, there’s no doubt I’d do it all over again in a heart beat. My quality of life is so much better with it than it was living with colitis that was so severe my diet was limited to ramen noodles, baby food, jello and ensure. I’d get sick to my stomach at least six to seven times a day and was constantly anemic and tired.
But, an ostomy definitely brings its own set of issues. One of them is that occasionally it leaks. Sometimes it leaks just because the seal never really took to the skin. Sometimes a little blood gets under the adhesive, creating a wet spot that eventually grows into a leak. (The stoma, or opening, is a little bud made by the end of the small bowel that sticks out on my side. It’s essentially a little ball of exposed blood vessels. Even someone without Hermansky-Pudlak Syndrome would get occasional bleeding.) And sometimes one develops little sores on the skin that can bleed and cause a leak. I’m not sure which it was Tuesday – I just knew I had to leave.
Sometimes, if the leak is very slow, I can buy myself some time by putting more surgical tape around the pouch, or packing around it with tissue. But as it grows, it itches, and is distracting.
Hoping that this would be a slow leak, I made what repairs I could in a public restroom. Within a few hours it was clear the leak was growing, and knowing it can sometimes take up to an hour to get a cab home, I decided it was time to go before the contents of my pouch had leaked onto my clothes.
For years I’ve never had to tell my employer about my ostomy because we had a private restroom where I could go and change my pouch if I needed to. I just kept extra ostomy supplies in my desk drawer. But, our new offices, posh as they may be, only have public restrooms. This is now twice I’ve had to flee home for a problem that could easily be fixed if there was just a place to do it.
The good news is I did get a lot done from home that afternoon. I felt good so I was able to stay focused and concentrate.
In 1992 I had an ileostomy to remove my large intestines and rectum. They’d become so inflamed and covered with bleeding ulcers that there was no alternative. I remember refusing to sign the consent forms until one of the doctors came in, sat on the side of my bed, and calmly explained I was bleeding so much that if I cared to see Friday I'd let them do the surgery. It was a Wednesday, I think. Back then I didn’t know that my colitis, which at the time was called Crohn’s Disease, was actually colitis of Hermansky-Pudlak Syndrome.
Since then I’ve lived with my ostomy fairly well. While it’s occasionally very irritating, as it was on Tuesday, there’s no doubt I’d do it all over again in a heart beat. My quality of life is so much better with it than it was living with colitis that was so severe my diet was limited to ramen noodles, baby food, jello and ensure. I’d get sick to my stomach at least six to seven times a day and was constantly anemic and tired.
But, an ostomy definitely brings its own set of issues. One of them is that occasionally it leaks. Sometimes it leaks just because the seal never really took to the skin. Sometimes a little blood gets under the adhesive, creating a wet spot that eventually grows into a leak. (The stoma, or opening, is a little bud made by the end of the small bowel that sticks out on my side. It’s essentially a little ball of exposed blood vessels. Even someone without Hermansky-Pudlak Syndrome would get occasional bleeding.) And sometimes one develops little sores on the skin that can bleed and cause a leak. I’m not sure which it was Tuesday – I just knew I had to leave.
Sometimes, if the leak is very slow, I can buy myself some time by putting more surgical tape around the pouch, or packing around it with tissue. But as it grows, it itches, and is distracting.
Hoping that this would be a slow leak, I made what repairs I could in a public restroom. Within a few hours it was clear the leak was growing, and knowing it can sometimes take up to an hour to get a cab home, I decided it was time to go before the contents of my pouch had leaked onto my clothes.
For years I’ve never had to tell my employer about my ostomy because we had a private restroom where I could go and change my pouch if I needed to. I just kept extra ostomy supplies in my desk drawer. But, our new offices, posh as they may be, only have public restrooms. This is now twice I’ve had to flee home for a problem that could easily be fixed if there was just a place to do it.
The good news is I did get a lot done from home that afternoon. I felt good so I was able to stay focused and concentrate.
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