It's Ostomy Awareness Day (apparently).
Here is my story of dealing with an ostomy bag (please note it can get graphic)
If it might make you queasy, read with caution:
A month before my senior year of high school, my Ulcerative Colitis had taken a turn for the worse. For the worst, to be fair. I was forced into a terrifying, emergency, major abdominal surgery to remove my large intestine, right around my 17th birthday. (I got some plush animals and stickers and books from family and nurses while I was in the hospital for my birthday).
In the surgery, surgeons took the end of my small intestine, brought it outside of the abdomen, folded it over itself like a cuff, and surgically sutured in to my abdomen. This is a stoma.
Waking up from surgery with a stoma was interesting... You have to cut out some adhesive paper around the stoma, then put the bag overtop. It has an opening at the bottom of the bag that is manually opened to empty the waste from the bag. There are products to help reduce the smell, drops and sprays you can use inside the bag itself, and I am sure there are new products nowadays.
Unfortunately, the adhesive is not accident proof, and the opening at the bottom of the bag could pop open on its own if the bag became too full - of air or waste or both.
You can use one bag for up to 5 days, but 2-3 days was recommended. Unfortunately, because there is no sphincter or muscle control of that portion of the small intestine, you cannot control when the stoma empties. So changing the bag can be messy, and downright gross.
I was, very unfortunately, extremely allergic to the adhesive. I developed massive itchy welts all over my abdomen and eventually had to stop using the adhesive. This means that the only time I could shower is on the day I changed the bag - otherwise any contact with water would peel the bag off of my abdomen, and leaks were common. Really common. I had sponge baths and washed my hair in the sink, but full showers were every 5 days. And, with the bag off and no control, showering felt about as disgusting as leaks. Plus, with lack of control means air pockets came out uncontrollably...
I think the worst air pocket I ever had was during finals week. Huge gymnasium, about 200 students, dead quiet save for the scratching of pencils on paper... and my ostomy... this loud, echoing, gurgle followed by a squeeeeeeeeak of an ostomy air pocket. Then followed by the turning of disgusted faces.
Yeah.
That was beyond embarrassing.
Anyways, back to the general experience.
I had to be really careful - accidentally bumping into something or being hit in the abdomen could damage the stoma - damaging the inside of the intestine. If I ran into a railing, or a person, or a cupboard, cuts would result and the bag would be filled with blood. There were belts and 'cups' you could buy for protection, and I wore these when I played any sports for recreation. I surely couldn't dive in volleyball or slide in softball, but I could sort of play during gym classes or lunch sports functions.
I was also involved in school plays and musicals, which often required quick-changes.... in front of all of the other students. Although I tried not to pay attention to the stares, comments, and general bullying that came with having something so disgusting out in the open, it was there. I have to say most people were pretty good - even curious, which I loved.
I was really lucky.
I only had to deal with an ostomy for 7 months before my surgeons did a reconnection and internal J-Pouch. Luckily they also only found the Crohn's a few months after this final surgery - if they had found it earlier they might have left me with a permanent ostomy.
They also did the surgery in such a way that, if I needed an ostomy in the future, it would be a relatively straightforward surgery. Fingers crossed I will not have to go through that.
It was not the end of the world... but overall, it was not a pleasant experience. Unfortunately, although it was supposed to improve symptoms, I developed mono during this time, so I really did not feel much better. And since, it has remained inflamed. And let's not forget that even though waste exited the stoma, there was still inflammation and other biological substances that exited the remaining end - even though it was attached to nothing.
I felt disgusting every single minute of having that ostomy. Dating lead to embarrassing moments. Actually, lots of things lead to embarrassing moments. I bought tight camisoles to go under all of my clothing to hide the bag - the lump - but even then, at clothing stores people would look at me like I had merchandise under my clothes. I was always especially self-conscious about the look, the smell, the idea, the leaks, pretty much everything.
And, frankly, at that time most people did not care. Most did not even know what a chronic illness was. They thought I had bulimia, or that I was drinking alcohol all the time and was simply always hungover, if I said the word "chronic" people automatically assumed I was a junkie, and when they found out I had had surgery, even parents of students said that the surgery 'wasn't that big of a deal'. (That was before it could be done laparoscopically).
ER nurses often thought I either didn't look sick enough, or I was treated and assumed to be a heroin addict.
It wasn't all bad.
I gained a hell of a lot of life experience at 17. I learned about what was truly important in life and I learned (quickly) what having real friends meant.
Now they have pretty bag covers and lace covering belts... and probably better products in general.
That's a bit of my ostomy experience.