I Have Got This But Not Every Day!

My name is Laura. I live with two stomas - a colostomy and a urostomy. A colostomy for the removal of feces and a urostomy for the removal of urine after surgery to remove my bladder and part of my bowel during a total pelvic exenteration surgery to a cancerous bladder tumor.

A normal life with stomas

Living with stomas is, on the whole, a very normal life to live. I work full time, I love to travel, cook, eat out, spend time with friends and family, and generally enjoy life.

The routine to change stoma bags becomes second nature after a while. You begin to understand what does and doesn't work. What to eat and not eat, with a colostomy in particular, and how often to empty your urostomy.

While I very much accept my stomas and the significant role they played in saving my life, I never forgot what it was like to not have stomas. By that, I mean a couple of things.

Miraculous but unfamiliar

Firstly, I never want to see my stomas as so normal that I lose insight into what others think and feel. The fact that unless you have one or know someone who does, having openings in your stomach for removal of waste, still is a miraculous but unfamiliar thing.

Secondly, like today, I have days when all is not right with the world.

Sometimes I'm not thankful, and that's okay

Today I am not thankful for my stomas, grateful for their life-saving role, or indeed find it easy to see compared to many, I have been afforded a very "normal" life, albeit a new normal. Defining normal in the wider sense would be a whole other much longer article!

I have had a bad night. I twice had to change my colostomy bag during the night which is unusual but additionally, I had to change my urostomy several times. This meant having had several middle-of-the-night, sleep-deprived decisions to tweak my solution to try and prevent another leak.

Coping with inconveniences

Getting back to sleep in these situations is hard. Your senses are alerted, you end nearly fully awake and there is an apprehension that if you fall asleep, the bag leaks, and then you will have to change all your bedding.

This morning I got up for work, feeling tired, weepy, and completely fatigued. An overall feeling of wanting to shut the world out. Feeling anything at work is unimportant and wanting to scream out loud, "Does anyone know what this feels like?"

Most people with ostomies after initial trial and error, don't experience these issues. My stoma is very retracted. There is an option to have it "refashioned" which means surgery to improve the stoma and have it protrude more. While it's 4 years since my initial surgery, I don't feel like electing to have any other surgery right now.

Give yourself a break

Today's not every day or anything like it however when days like this come along, I try to cut myself some slack. I do what I need to and lean on my husband for support and help with things around the house. I need to focus on tweaking my bag change solution to prevent leaks.

I try to be good to myself and tell myself, "Laura you usually got this and rock these two stomas but today, you need to give yourself a break." This day too will pass, as my mother would say.

Tell us about your experience living a normal life with a stoma in the comments below, or share your story with the community.