Advice from an ostomate and Licensed Clinical Social Worker for when it all feels like too much.

The experience of managing an ostomy or chronic illness can be a lot to handle. Add in the demands from our busy lives and it can all feel completely overwhelming. No doubt, stress may be a normal part of everyday life. 

It might seem like there’s nothing you can do about stress. The medical bills won’t stop coming, there's always ostomy supplies to order, and the responsibility of taking care of a stoma is ongoing. But you have a lot more control than you might think. 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 than they actually do. For instance, I’ll block out 15 minutes for an appliance change 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, when your stoma suddenly acts up, you’ll feel much less stress because you know there's extra time to apply the system properly.

2. Simplify your life.

Is your life too complicated? Take a good look at everything you do and ask yourself if there's a better, easier way (or maybe not do it at all). When we're anxious and stressed, it's easy to look at all of the tasks ahead of us and become overwhelmed. Technology can help us organize our lives. Many medical suppliers offer automated reordering and there’s a handy app called Ostobuddy which alerts you when ostomy supplies are low or when to refill a prescription. 

3. Start daily habits.

One of the most important things you can do for yourself is daily self-care. For instance, I start each morning with a hydration routine by drinking water as soon as I wake up. Next, I might take vitamin supplements if I’m not eating well. Then I'll pack healthy snacks and my water bottle. I always change my pouch prior to eating breakfast and make sure I have extra supplies in my purse. These daily habits allow me to feel prepared for the day. And if you’re not a morning person, plan 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 appliance peeling off 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’re better-off knowing these things are readily available just in case you need them.

5. Lean on others for support.

The first step is being honest about your needs because having an illness or ostomy might be a lifelong condition. 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 having someone bring dinner over when you’re feeling fatigued, or asking for donated ostomy supplies if you're drained from paying out-of-pocket.

6. Be kind to yourself.

If you’re having ongoing ostomy issues, this kind of overwhelm can lead to feelings of depression and anxiety. 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 by giving yourself some credit for everything you’ve been through. Talk to yourself as if you were talking to a loved one or best friend. It also helps reading inspirational stories from other ostomates to lift your spirits.

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. Profanity is definitely allowed if necessary, but including gratitude and appreciation are key.

8. Connect with others who understand ostomy life.

There are many ostomates who have gone before you, and many who have yet to receive an ostomy. It's ideal to find others going through similar experiences because we can all learn from each other. The United Ostomy Associations of America has an online discussion board and over 300 affiliated support groups across the United States. If you want a pen friend, Girls with Guts has a Pen Pal Program where you can send mail back and forth to other ostomates. Don't underestimate the power of peer support. 

THE RULES: Just pick out ONE (maybe two) of these tips to try today. I do not want you to become overwhelmed by trying them all!

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