Hi everyone! I’m Roger, Sean’s stoma. Some of you have asked if all stomas act like me or if I’m just a stubborn brat.
Well, let me tell you the story of how I came to be.
Most people have a healthy digestive system, including a small intestine, large intestine, and colon. This system helps them intake, digest, and break down food, absorb water and nutrients, and remove all the stuff we don’t want or need from our bodies.
Unfortunately, some people have faulty systems, which can cause mild to severe symptoms, including:
- Belly pain
- “The Overachiever” (aka too much activity)
- “Clogged Pipes” (aka not enough activity)
- Urgency (aka when you gotta go, you gotta go)
Long term symptoms can result in:
- Poor nutrition
- Bone loss
- Blood clots
- Blocked bowels
- A hole in your colon
- A rapid widening of your colon
- A higher risk of colon cancer
Many of these symptoms are often treatable with medicine, but sometimes can result in hospitalization and even death. Faulty systems may be the result of one of the following:
Irritable Bowl Syndrome (“IBS”) which is a functional problem. Tests won’t show any physical reason for your symptoms.
Irritable Bowl Disease (“IBD”) which is a structural problem. That means physical damage causes your symptoms.
If you have IBD, it can be one the following:
Ulcerative Colitis – which attacks the colon specifically.
Crohn’s Disease – which can attack anywhere along the entire digestive tract.
In 1999, Sean was diagnosed with Ulcerative Colitis, and his large intestine and colon were so sick, the doctors couldn’t find a med that would help him, so they had to be remove both of them completely.
Fortunately, his small intestine worked fine, so it took over for the large intestine and Sean did pretty well for a decade or so.
But then, Sean’s small intestine started getting sick, and the doctor’s discovered that Sean had developed Crohn’s disease as well. (Or perhaps it always was Crohn’s disease. Who knows?)
For a few years, Sean got infusions that helped keep most of his symptoms at bay, but in 2021, things got soooo bad, the doctors had to do more surgery, and that’s when I was born:
The doctors removed the piece of sickly small intestine, then made me, Roger, to help Sean get rid of the yucky stuff while his small intestine healed from the operation. At the time of surgery, the doctors weren’t sure if I would be permanent or not.
Most stomas behave: they stay put, right where they were created, and after their body buddy adjusts, everyone goes on to live a relatively normal life. So, after Sean learned all the tricks of the trade, he thought he’d just have to give me a new frock every few days and all would be well.
But not me. Nope, stomas like me aren’t content to stay where we’re put. We want to stretch our wings and see how far we can get in life, so I started to grow, and grow, and get farther out of Sean’s body and into the great big wide world.
Unfortunately, my yearning to be free causes problems for Sean. Consequently, he tries to coax me back inside and keep me in place with special belts and straps, so he can move about more freely and leave the house without worry.
When he puts the belts on, I can’t see anything….
…and all that stuff I try to help him get rid of gets in my face and and on his skin!
Fortunately, (for Sean, anyway) the doctors ran some tests and determined Sean’s small intestine was healthier than they thought so, next month, I am going bye-bye and all Sean will have left to remember me by is a little scar on his oversized belly.
I am sad to be going, but I know I helped Sean get better, and this world (and pouch) is just too small to contain a big personality like me, so I will return to doing inside work, where I can make a bigger impact from behind the scenes.
Did you know:
Having your whole colon removed is called a Colectomy. (That’s what Sean had.)
Stomas made from their large intestine are called Colostomies.
Stomas made from the small intestine are called Ileostomies. (That’s what Sean has.)
Ileostomies are more active then Colostomies. (But they don’t lose weight because of it, dammit!)
People with ostomies of either kind are called Ostomates.
You may know an Ostomate and not even know you know an Ostomate.
Ostomates who love spaghetti are called Pastomates. (Just kidding!)
Ostomates who love the Academy Awards are called Oscarmates (There I go again!)
Ostmates who kiss members of the same sex are called Ostagay-tes. (OK. Last one. I’ll stop!)
It’s important to note that Ostomates can and do still still eat cookies, but some of them can only eat them if they’re gluten free. So if you thought you couldn’t send Sean gluten free cookies because of me, guess again, partner!
Hope that answers all of your questions. If not, feel free to ask me more in the comments.