Tell us about your symptoms and treatment experience. Take our survey here.

Dealing With Illness and Ostomies: Late Night Thoughts

Do you have late-night thoughts? I think we all do at some point. There is always a night you can't sleep for one reason or another. It could be a Sunday night. You may have slept late that lazy Sunday morning. Or you may have things at work that are prying on your mind.

You may have a medical appointment. A meeting with your doctor. A scan or scope. Or have an imminent surgery date looming. Whatever the reason, sleep is sometimes hard to find despite being dark outside.

I live in Scotland, so hot weather isn't usually something we experience. I am a sun worshipper and spend my money and vacation time often traveling halfway around the world for a great sunshine fix. Tonight, however, it is unusually hot. We don't have air conditioning as it is rarely needed. Even with the windows open, I am struggling to get cool enough to sleep.

No "get out of jail card"

I have always been a warm person. I have found that since my ostomy surgery triggered the surgical menopause, I feel the heat more. I think my 2 ostomy bags add to my overall body heat too. As I write this, my husband is asleep and snoring beside me.

Tonight, I am in a very reflective mood.

I haven't felt myself all week, been nauseous, and even sick. I have been off food (which is not like me!) and even more not like me. I didn't even feel like my Saturday night gin martini – my husband said I really must be ill! It's not that I believe a cancer diagnosis gives you a "get out of jail card" for never being sick again, but I admit I take it hard.

Dealing with illness and ostomies

Firstly, physically, even a common cold takes so much more out of me than it would before. I also find that any illness (and touch wood, I am grateful I am not often ill) really fatigues me.

When I am ill or feel a bit off, I find the physical and emotional aspects of an ostomy bag change become harder. I often have leaks due to my stoma being retracted, which compounds the problem as I need to change my ostomy bags more. When I don't feel myself, I have less energy and concentration for the bag changes, and emotionally, I go down a rabbit hole.

I resent my ostomies. Yes, the ostomies that saved my life. Right now, however, the ostomies still need my attention day and night, regardless if I feel unwell. I begin to resent them.

In the clear light of day

I then started to resent the bladder cancer, which caused me to have them. All the raw emotions I felt in the early days come streaming back. At the moment, that's how it is. I can't, and in some weird way, I don't want to see it any differently. It is the reality of the situation.

In the morning, in the clear light of day, metaphorically speaking, I will see things differently. I will regain my gratitude for the ostomies who saved my life. That morning maybe tomorrow, or perhaps a week from now. I hope it is the former, of course.

For now, however, as my mind wanders, all I can think, as I hear the automobiles on the main highway about a quarter of a mile away, is how many people have 2 ostomy bags they have to manage while they feel ill.

The odds of that scenario are pretty low. However, looking outside the box, I am more than aware many of these automobile drivers or passengers, like many people reading this, will be fighting similar or harder battles.

With that, I find peace in myself, put down my phone, and attempt to get the sleep my body desperately needs. Goodnight.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America survey yet?