Happy World Ostomy Day

Today, October 3rd, is World Ostomy Day. A day to raise awareness of ostomies, ostomates, ileostomies, and ileostomates.

Unfortunately, most of you have likely never heard of World Ostomy Day or even know what an ostomy or ileostomy is. Somehow days like Doughnut Day or Coffee Day attract more attention than days celebrating ostomies, colon cancer, bladder cancer, Crohn’s Disease, or ulcerative colitis….

I presume this is because no one really wants to talk about what happens in the bathroom. Well, it’s time to change this. Too many people neglect to tell their doctor what happens when they go to the bathroom – they ignore the cramps, pain, blood, diarrhea, constipation, gas, and bloating.

But these are signs and symptoms of very serious diseases. Ignoring these symptoms only leads to bad bad things. And let me tell you an ileostomy or ostomy is not a bad thing.

For people like me – it’s a lifesaver. I have an ileostomy because I have ulcerative colitis. Ulcerative colitis is terrible. Having an ileostomy is not terrible.

This is how I explained my ileostomy to my friend this morning as we walked to the river for a swim,

Because of ulcerative colitis, I had my colon removed. So now my small intestine sticks out of my stomach. My small intestine empties into a pouch attached to my skin. I empty this into the toilet. I change my pouch every four days. I also had my rectum removed and my butt sewn shut. This is called a Barbie Butt.”

That’s it. Plain and simple. My ileostomy doesn’t stop me from living.

In fact, it allows me to live. I do struggle with food – I can’t eat everything I want and I do experience a lot of pain in my abdomen – but this is all solvable and a minor inconvenience when compared to being as sick as I was before having my colon removed.

I no longer have to wear adult diapers. I no longer crap myself in the grocery store. I no longer see the toilet water turn bright red because blood is literally dripping out of my butt.

Now, thanks to my ileostomy, I feel free. I really can do anything. These photos, taken by my friend Tom sum up the first part of how I spent World Ostomy Day:

I started swimming around a year ago. I was really nervous to swim with my pouch and ileostomy. What would happen? What if it doesn’t stick? What if my pouch fills up while I’m swimming?

Finally one day, I got fed up with myself and my dithering – I went out and bought a swimsuit, goggles, swim cap, and ear plugs – and then I went to the pool and went swimming.

It was awesome. I was hooked on swimming again. I was slow (still am). My technique was very rusty. But I really felt at ease in the water. Swimming 25 meters was intimidating – but I stuck with it.

And now I’m swimming with a swim club and meet up with a cool group of swimmers to swim in the Ottawa River. I lucked out with my Ottawa River Swim Gang – super welcoming, patient, and experienced swimmers – who tolerate my less-than-straight lines, endless questions, and constant chatter.

I could not have gone swimming before I had my colon and rectum removed. There was no way I could get in the pool or out in the river – the chances of my needing to rush out very quickly due to constant diarrhea, lack of bowel control, and the fear of a big disaster – meant I could not swim.

But now I can. My ileostomy means I can do it all. And I intend to.

After my swim in 15C water, I went for a bike ride.

Life is good. Happy World Ostomy Day! A big thank you to the smart doctors who gave me my life back.

Silver Linings

My last post came from a place of struggle and frustration… Sometimes being honest and not sugar-coating life has its drawbacks.

I don’t want you coming to this site and always be reading about my frustration, illness, or downright anger. So, yes, things are not great with my lonely small intestine – but I’m doing just fine.

I’m working with a dietitian who specializes in working with people like me who have funky digestion. I’m finding foods that I can eat and don’t cause problems. Yes, I’d like to be eating the foods I could eat just a mere seven months ago – but eventually I’ll get back there.

I’m in a good place. And I’m very lucky to be in this place. If there is one thing I’ve learned, it’s to never take the small snippets of goodness for granted.

These micro moments slowly but surely add up to being big huge wins.

It’s kind of weird to realize the summer is almost over. What a summer it has been… I think that as challenging and downright depressing these past six months have been, it’s important to still see the good stuff.

More downtime. More reading. Swimming in the open water. Meeting some cool new people. Seeing the Ottawa Women’s Cycling Network Facebook group take off. Discovering new cycling routes. More time for sketching. Less doing and more being. Stronger connections.

I know that for many people this is a rotten time and I try to remember this when I’m out at the grocery store or simply driving the car. Just like the person standing too close to me doesn’t know what’s going on in my life – I don’t know what they’re dealing with.

Grace is a word that comes to mind frequently these days.

Happy 4-Year Stomaversary

Four years ago today on August 8, 2016 I had my colon removed.

Four years ago I started to learn how to live with my small intestine sticking out of my stomach.

Four years ago I began learning about pouches, leaks and angry red skin.

Four years ago I started to understand that food would never be the same for me.

Four years ago my life changed.

I will never ever regret having my colon removed. This decision saved my life.

But today, four years after having my colon removed, I am not celebrating.

Today the realities of living without a colon, a rectum, and only a partial small intestine hit hard.

I did not go on my planned four-hour stomaversary celebration bike ride.

Instead I woke up to debilitating pain in my small intestine. Pain that I equate to trying to “digest knives”.

Pain that has made me not ever want to eat again. Pain that reminds me that while I look healthy – I will never be fully healthy.

Pain that reminds me to not eat berries, apples, kiwi, plums, oranges, carrots, broccoli, cauliflower, spinach, beans, celery, onions, peas, corn, eggplant, grapes, bananas, chocolate, nuts, seeds, butternut squash, salad, tomatoes, or pasta.

Pain that reminds me to never take anything for granted.

I nicknamed my stoma Reset.

Four years ago I was able to hit the reset button on my life. I’m forever grateful to the smart doctors and surgeons who gave me my life back.

But today is also a powerful reminder to never play fast and loose with this one life I’m given.

Marc and I celebrated our 16-year wedding anniversary on Friday, August 7.

How lucky am I? Extremely lucky.

A Fresh View

It’s 5:50 a.m. on a Monday morning. I got up at 3:45 a.m.

This new early morning routine is down to one thing – the pull of the water. This summer I’ve become hooked on swimming in the open water. A positive side effect of the pools closing has been discovering how much fun it is to swim freely without the boundaries of lane markers, change rooms, schedules, and chlorine.

But, I’m not swimming right now. I got up with a plan to swim. A lingering threat of lightening and a feeling of fatigue have kept me home. Going back to bed is not an option for me. Once I’m up – I’m up.

And in typical fashion, I wish I’d gone swimming. I know I’ll look at the photos from the beach and think “ah, I should have gone”. But I know the front porch and the early morning quiet is the right choice.

Here’s Tom’s photo of the view I missed earlier this morning:

A subtle tiredness washed over me last night as I fought the “head droops” while trying to watch a movie at 7:00 p.m. I was in bed by 8:00 p.m.

Old me would have gone swimming, ignoring the fatigue and this deep sensation of not feeling “great”. Some days I miss the old me – the one who pushed through workouts no matter what, had huge goals to propel me forward, and a deep sense of unfinished business.

The new me is trying to slow down the pace. I’m still active and staying busy but with a different purpose. Pure enjoyment and satisfaction. Being fully in the ride, swim, or moment and actually experiencing it. Letting go of the need to always do a long ride on Saturdays or to get in that weight workout when I’d rather be reading or to have a schedule that kept me ticking and regular.

Nadine’s photo of the morning that I missed (but will enjoy tomorrow):

At Loose Ends

I’m just going to come out and say it – I miss the before times.

I miss having plans. I miss being spontaneous. I miss seeing friends and family. I miss feeling at ease when I go to the grocery store.

I miss going mountain biking with my riding pal. I miss going for group rides. I miss sitting down in a restaurant for a meal with friends. I miss hugging (I know shocker – I’m not much of a hugger).

I miss the casualness of life.

I miss having plans.

I know I’m not alone in this. And I know that my experiences during the pandemic have been very easy compared to those of so many. I know I’m fortunate.

But, I still feel directionless. I know this feeling will pass and I’ll get my mojo back. But it’s a challenging place for me to be since I’ve always been very driven and motivated.