The experience of managing a new stoma or dealing with ongoing skin problems can be a lot to handle. Add in the demands of normal everyday life - it can all feel completely overwhelming.
Whatever the reason you're feeling frazzled, there are ways to help prepare yourself to handle whatever may come your way. Here are eight tactics that can help you deal with ostomy overwhelm:
1. Know how long things take.
I'm notorious for assuming tasks take much less time. For instance, I'll block out 15 minutes and then discover it actually takes 30 minutes! I've learned this simple rule: whatever time you think a task will take, double it. That way you when your appliance change doesn't go smoothly, you'll feel less stress because you know you have extra time to apply it properly.
2. Simplify your life.
Is your life too complicated? Take a good look at everything you do and ask yourself if there is a better, easier way to do it, or maybe not do it at all. If you don't get through your to-do list, it's okay. Figure out your priorities, like having a system in place for organizing and ordering ostomy supplies.
Check if your supplier has automated reordering. There is also a handy ostomy tracker app available for smart phones that alerts you when supplies are low or when to get a new prescription.
3. Get into daily habits.
Getting the most important things done in an orderly fashion is taking care of you, first and foremost. For instance, the first thing I do each morning is hydrate. Then I'll change my appliance prior to eating breakfast. Next, I might take vitamin supplements if I'm not eating properly. Then I prep for that day's events by packing healthy snacks and my water bottle. These daily tasks allow me to feel prepared for the day. And if you're not a morning person, pack things the night before.
4. Allow for Murphy's Law.
No week is complete without something going wrong, so plan for it. Take for instance that terrifying feeling of your wafer peeling off your skin while you're at work, or a very inconvenient leak at the movie theater. Allow time in your week for preparing an emergency ostomy kit and extra clothes, and always carry it with you. You'll be better-off knowing these things are readily available just in case you need them.
5. Lean on others for support.
Don't underestimate the power of peer support. When you ask for help in a considerate way (and understand they may need to turn you down), there's no need to feel guilty about leaning on others. It can be something as simple as coming over to watch a movie when you're not feeling well, or asking for a ride to a doctor's appointment.
6. Be kind to yourself.
If you're having ongoing ostomy related issues, this kind of overwhelm can lead to feelings of inadequacy and failure. This is not the time to beat yourself up. It's extra important to pay attention to your mental radio and turn down the volume on your inner critic station. Practice self-compassion, and remember all the things you've been through. Talk to yourself as if you were talking to a loved one or best friend.
7. Dump it all on paper.
When you're fed up with your ostomy, sometimes taking time to write down your frustrations can help. At Oak Park Behavioral Medicine we give our patients journals to help with this. One of my favorite assignments is having ostomates write a letter to their stoma with all their truest emotions and thoughts about it. Profanity is definitely allowed, if necessary.
8. Connect with others who have been there.
There are many ostomates who have gone before you, and many who have yet to receive an ostomy. We can all learn from each other, so it doesn't hurt to reach out to a UOAA support group or discussion board. Sometimes this kind of understanding can really help when you're feeling overwhelmed with ostomy life. If you want a pen friend, Girls with Guts has a Pen Pal Program where you can request another ostomate to send snail mail back and forth to.
The Rules: Just pick ONE (maybe two) of these tips and do it. I don't want you to get overwhelmed by trying them all.
Stephanie had ileostomy surgery in 2009 due to Crohn's disease. She is a Licensed Clinical Social Worker who specializes in health psychology and chronic illness at Oak Park Behavioral Medicine in Illinois.