Dear Intestines, you don’t scare me.
Let me preface this post with some information about myself, following my first surgery.
A little less than a month after my colectomy, I started my senior year of college. There, I was Editor-in-Chief of the campus newspaper, and, in order to graduate on time, I planned to take 18 credits, including an internship (for my job in the sports department of a local newspaper, which I interned at the previous summer) and an independent study (the impetus to the inception of this blog).
After a rip-roaring two months leading up to the semester, I wasn’t exactly sure what I could or couldn’t take on, who I would or wouldn’t tell, how much or how little motivation I would have, and so on. To be honest, it was daunting to think about.
- At the same time, though, I didn’t want to surrender to my situation, and I wouldn’t allow the future I’ve been trying to build for the past three-and-a-half years to crumble right before my eyes.
So I didn’t think.
I just worked as hard as I did the previous seven semesters and hoped (and prayed) for the best.
And it worked.
But I’d be lying if I said it didn’t come without its hiccups.
Early on with an ostomy bag, you realize there are a bevy of different brands, kinds and supplies that you can order. When I first got out of the hospital, and a couple weeks after, I was using a basic one-piece system that got the job done, but only for a few days. So I switched to a two-piece system, which comes with a skin barrier (what sticks to your midsection) and the actual pouch which can be fastened on and off.
Shortly after testing the two-piece system, I slept over my brothers’ apartment. Everything went fine. We joked and talked and laughed as usual, and eventually fell asleep, I on one of two couches in their living room.
When I woke up, everything was not fine.
Half-asleep, I slipped my hands underneath the blanket, when I felt something wet on my shirt and sweatpants. I lifted the blanket and saw my pouch had not connected right and, therefore, was hanging half-open, letting you-know-what leak out as I slept.
I rushed into the bathroom, cupping my hand over my ostomy. I sat down and took my shirt off, wiping myself off with handfuls of toilet paper and an extra towel. I then attached a clean bag I packed just in case (phew!). Afterward, I asked my oldest brother for an extra shirt and shorts, changed clothes and bid adieu to my soiled T-shirt, boxers and sweatpants.
- I just bought those sweatpants, too, gosh darn it.
I drove home, still somewhat shell-shocked at what just happened. Luckily, though, your adrenaline kicks in at that moment, and, instead of lamenting what’s going on, your eager to find the solution and do it as swiftly and cleanly as possible.
It’s safe to say I switched back to another one-piece system following that episode; however, I would soon attempt the two-piece once I felt more comfortable changing the bag.
And it worked well. Very well.
For the most part.
I had a similar mishap a month or two later; but, this time, I wasn’t in the comfort of my (brothers’) own home.
It was right before a meeting I was to conduct in my school newspaper’s office with my adviser, fellow editors, writers and photographers. Beforehand, I was rushing to print out and organize ballots for the staff to vote on the next year’s editorial board. Once I had nearly everything ready to go and the staff was trickling in, I felt my shirt press against my stomach and, once again, I felt something wet.
I threw down the folders I was organizing and raced out of the room, trying not to make it obvious that something was wrong.
- Only a few staff members knew I had an ileostomy, so who knows what they were thinking as I suddenly became pale-faced and fled the room… but, quite frankly, it doesn’t matter!
I went into the bathroom and realized, somehow, even with an ostomy belt clipped onto it, my bag detached and caused a leak. I zipped my sweatshirt off and hung it on the stall door, lifted my shirt, grabbed gobs of toilet paper and–well, you know the drill.
This time, however, I had no extra bag. So, after I cleaned most of the mess, I tried to place the bag as tight as possible, dropped my shirt back down, walked out of the stall and held my sweatshirt against my midsection to cover some of the mess.
- Yes, I washed my hands, too.
I–a mess, physically and mentally–walked back into the office, whispered to my adviser that I had a malfunction, apologized to the staff and briskly escaped to my car.
During moments like those, it’s easy to break down, scream and cry and give up. But, I’m telling you, take it one step at a time: clean the mess, fix/replace the bag, change clothes, take a deep breath and take a nice, hot shower.
There are ways to avoid leaks, and they’ll happen less frequently–if at all–once you’re comfortable with your appliance and changing it at the right times. It’s up to you which bags you like best, but, no matter your choice, know this:
It will all be OK.
- It was–and still is–for me. Through faith, persistence, focus, hard work, family and friends, I am now blessed to call myself a college graduate. Whatever your particular goal may be right now–be it graduating college, running a marathon, learning to scuba dive or sky dive, attracting the girlfriend or boyfriend of your dreams–you can do it. Whatever you do, try not to allow your predicament to hinder you from living the life you wish to live. Sure, having an ileostomy is a constant battle, and, sometimes, it can rip the confidence right out from under you; but, if you take it day-by-day, stay focused and keep your head up, all while holding a firm grasp on hope, you’ll be just fine–and probably even stronger once it’s all over.
To ease you along your path, here are some tips and tidbits of information I’ve learned along the way:
Once you’re discharged from the hospital, you’ll surely bring basic bags home with you. But, sooner rather than later, you’ll start receiving samples from companies like Coloplast, ConvaTec and Hollister (no, not the clothing store). Each will likely provide a purse-like bag full of miscellaneous products that can be useful, as well as some pouches. I’ve sampled supplies from all three, and, quite frankly, you can milk the free supplies they offer for a month or two.
As far as ileostomy bags go, I’ve tried one-piece systems with and without a filter, plus two-piece systems with a filter. The filter allows some of the gas outputted by your stoma to flow out, avoiding the bag inflating like a balloon. I’d definitely recommend it. After a few nights in bed not necessarily monitoring the pouch overnight, the filter eventually gets clogged, rendering it basically useless.
This is where the two-piece comes in handy. Rather than changing the entire appliance when this happens–the bag fills up with gas, that is–peeling the skin barrier off your abdomen and having to measure, cut and stick the other appliance on, you can simply detach the bag and place another one on in seconds. To avoid leaks, make sure you hear a click as you connect it, and you press firmly through the entire plastic ring, or flange. Once the appliance starts to wear or peel, that’s when you can change it entirely.
These various pouches can also come in clear or tan. When you’re no longer worried about your output, my suggestion would be to switch to the tan, more concealing pouches.
Your samples will also be packaged with some information regarding each company, which can be very helpful, whether you’re not sure how to change an appliance, curious about another type of pouch, wondering how to order more supplies or looking for tips on how to live a normal life with an ostomy.
The most notable products, in my opinion, are wipes to clean the area around your stoma and accessories to help avoid leakage.
There are adhesive wipes, which you can use to help alleviate the irritation and pull when peeling off the skin barrier, as well as to remove excess adhesive that still remains on your skin.
There are also protective skin barrier wipes to protect your skin from rashes and the like when changing an appliance; these can be applied directly before you place another appliance on, especially since, in most cases, it will provide some extra stickiness on your skin.
Before you go ahead and stick that baby on, however, one of the most vital accessories to avoid leakage is the barrier ring, or Eakin seal. These are malleable, almost clay-like rings that can be molded onto the inside of your appliance before sticking it around your stoma, providing an extra layer for any wannabe leakage to soak into.
To add yet another level of protection, you can wear an adjustable ostomy belt, which easily clips onto the sides of two-piece systems and wraps around your waist. These also come in white or tan, so I’ve experienced.
ONE… OKAY, TWO MORE THINGS
If you order the two-piece systems, the skin barrier and pouch will be two different items. Also, there will be varying sizes. Keep track of the size of your stoma, as it will likely decrease in size over time, albeit slightly. You can adjust the size of your skin barrier–and, thus, the pouch’s flange size–with the size of your stoma. Make sure they match!
After all the sampling and testing, I have chosen the tan-colored Hollister two-piece pouch. Since I have chosen Hollister, I also order their Adapt skin barrier and adhesive wipes and barrier rings, along with their ostomy belt (also in tan). Although I don’t wear the belt at all times, it becomes very helpful once the appliance is starting to fray or peel, as well as when performing physical activity or even when sleeping.