On Being Active with an Ileostomy

This is a post I wish I could have read in 2016 as I was getting ready to have my colon removed and learning how to live life with an ileostomy.

I’ll start by telling you – yes, you can be active with an ileostomy. In fact, you may find you can be more active with an ileostomy than you were with your pesky and annoying colon. At least, this is how it is for me.

In the last few years leading up to my surgery, I was very sick and my life was ruled by the proximity of the bathroom. Sure, I still rode my bike and went to yoga but I did so very very cautiously and with a high amount of fear. I just never knew if I could trust my body to let me be.

Now, here I am 6 years after having my colon removed and 4 years after having my rectum removed and I’ve never been so active. It took me a long time to rebuild my body – both my physical and mental strength and endurance.

Having your colon removed is a big deal. Maybe for you it’s coming after years of sickness due to ulcerative colitis or Crohn’s Disease, or you were diagnosed with cancer, or you were in an accident, have had some terrible bad luck with a routine surgery, or had a traumatic birth experience.

Regardless of how you got here, to what I like to call “the cool kids club” – it’s a big deal. There is a lot to process. From learning the ins and outs of changing your pouch, getting used to having your small intestine stick out through a hole in your stomach to learning what foods your stoma likes and dislikes – it’s a lot.

So, let’s talk about being active with an ileostomy. First off, I’m not a doctor, nurse, or any type of health professional – I’m just a person with an ileostomy who is very active.

This is me

Now, I’ve used this photo to illustrate an important point – looks can be deceiving. You see a skinny person with some ripped ab muscles. I see me at a time last summer when my body was not a fan of food. I got really skinny – not on purpose and not from exercising and a careful diet. Nope, this happened because, well, life with an ileostomy and ulcerative colitis can be rotten sometimes.

So, this is a reminder not to believe all the stuff you see on Instagram or other social channels about being active or life with an ileostomy. The photo is only telling you a fraction of the story. So when you read that someone started lifting weights 4 weeks after having their abdomen sliced open and their colon removed or that someone is holding 2 minute planks 8 weeks after having their rectum removed – well, know there is more to the story than the photo and the caption…

You are you and you need to go at your own pace. When it comes to being active with an ileostomy – you need to do what feels right for you and your body.

Sweat

Sweat is the number one thing you need to think about when you’re moving your body and being active with an ileostomy.

When you sweat you lose electrolytes. Because you don’t have a colon, you no longer have the ability to absorb electrolytes (including salt). When you’re low on electrolytes, bad things start happening. So before you start doing an activity that causes you to sweat – you need to know how to stay on top of your electrolytes.

So first – find an electrolyte replacement drink/powder/mix that you like and your small intestine likes. I use Hydralyte – the tabs are super easy to use and convenient to carry with me when I’m out riding my bike.

Remember that you can’t just drink water when you work out. You need to consume electrolytes.

Sweat is also a game-changer because your flange does not like sweat. Sweat does not great things to your flange – it makes it peel and lift away from your skin. This can cause leaks (definitely not fun).

For me, the summer is the worst time of the year to be outdoors exercising. I sweat a lot. This means I need to pay extra attention to the status of my flange. Through trial and error I’ve found that using Hypafix tape around the edges of my flange works best for me in keeping the edges stuck stuck to my skin. I tried using flange extenders – no dice – there is not a single brand of flange extenders that can withstand one sweaty hour-long biker ride.

So learn what happens to your flange when you sweat. You might not be a heavy sweater or your sweat may not bother your flange. (Every person’s sweat is different.). In the summer, I only get 3 days of wear out of my flange and pouch – in the winter I can sometimes get 6 days of wear. It all depends on how much sweating I’m doing.

So sweat matters – a lot.

Food

Learning what to eat before you work-out/exercise is important. Regardless of the type of activity you’re doing, you don’t want to be worrying about your pouch and it filling up. Remember, you cannot control your small intestine.

I’ve tried. There is no amount jedi mind trick thinking that works. Unlike when you had a healthy functioning colon and you could squeeze your butt cheeks together and just go later – this is not possible with your stoma. It truly has a mind of its own.

Think about what you’ll eat before you work-out – you need to make sure you have the right amount of energy (calories) but also want to know can make it through a work-out at the gym, a swim in the pool or open water, bike ride, run, yoga class, or whatever without having to stop and empty your pouch multiple times.

Now, if you’re doing a long endurance activity – cycling, running, skiing, walking, etc. it’s very likely you’ll have to stop and empty your pouch. I find that for bike rides under 2 hours, if I get my food right, I don’t have to stop – but of course this is really out of my control and all up to the mood of my small intestine and stoma.

If I’m out for a longer ride, I think about bathrooms and bathroom access. I’ll plan my route around gas stations, coffee shops, etc. that have bathrooms. I carry a ziploc bag of neatly fold pieces of toilet paper with me – this way I’m not dealing with flimsy 1-ply and trying to clean out my pouch in some not-that-great bathroom or port-a-potty…

Food also matters if you’re doing a long endurance activity where you need to eat to stay fuelled. Think about food and transit time – you don’t want to eat something on your ride and then 30 minutes later have to make an emergency stop because your pouch is filling up.

For some people the magic banana is a their go-to endurance food. For a lot of people, it takes a very long time to digest a banana. Not me… I’ve tried bananas in all their forms – from the very brown and mushy stage to the green-skinned not ripe stage – bananas do not linger in my body. I cannot eat a banana before a ride or swim and I definitely cannot eat a banana while exercising – no banana wants to stay in my body….

So, figure out works for you. Find your foods and stick with them. This might mean you can’t eat the delicious baked goods at the coffee shop when you stop for a ride with your friends – no big deal – just bring something with you that you know you can eat (Snickers bar is always a great choice for me).

Rest

When you’ve fully recovered from you surgery (or multiple surgeries) and you’ve been given the green light from your doctor to start moving and being active, it can be very tempting to just go for it. Don’t do it. Take it slow. Listen to your body.

Your body is learning a whole new way of being. You might get tired more easily. You might need to rest more than you did. This is okay. It’s all about enjoying your new body.

Your ileostomy and a stoma are a good thing – because of them you can keep on living. You can be active. You can travel. You can work. You can hang out with your friends. You have a second chance at life. So be patient. Give your body time to adjust. Give yourself time to accept your new body.

Muscles

Depending on the type of surgery you had and the reason why you’ve been gifted a stoma and ileostomy, your muscles, particularly your abdominal muscles will have been sliced, diced, and stretched. You need to pay special attention to rebuilding your muscles.

It’s not uncommon for people to develop a hernia after having their colon removed. Remember, your stoma is actually a weak point in your abdominal wall – it’s not meant to have a hole cut in it. Talk to your stoma nurse or a physiotherapist about exercises to strengthen your abdomen after having surgery.

You may find you have new muscle imbalances you didn’t have before surgery. In my case, before my colon removal in 2016, I had excellent balance – I could hold any one-legged balancing pose in a crowded yoga studio and look around the room without any trouble. And now – impossible. In fact, my entire lower right side is not what it used to be – this is likely down to scar tissue and adhesions.

Don’t be discouraged by this. Know that it’s normal. And you can rebuild your muscles and get your strength back. It just takes time.

Sports

Which sports can you do with an ilesotomy? Uhm – how about all of them. Yes, all of them.

In the 2021 Tokyo Olympics, Jenny Carlson competed on the Swedish handball team. You can even swim across the English Channel – Gill Castle is training to do this right now (and she swims year-round).

I do a wide variety of sports – cycling, swimming, yoga, strength training, and I play hockey. I didn’t start doing all of these immediately after my surgery. I started with walking first and then 8 weeks after having my colon removed, I started cycling again. But I started slowly – I started with doing short bike rides on my city bike on the bike paths. Gradually I built up to longer rides and then I started riding my road and mountain bikes again.

But I took it slow and steady. This wasn’t easy – I wanted to do all the things… but I didn’t. Thanks to a slow and steady approach I was able to start cyclocross racing again, just 3 months after having my colon removed. I was at the back of the pack and was utterly exhausted at the end of each race – but it didn’t matter. I was doing it. And you can do it as well.

It took me longer to start swimming again. And to be honest, I was really nervous about even taking a bath. I spent a lot of time thinking about swimming, worrying about swimming, and trying to figure out what could happen if I went swimming. And then one day – I just said – screw it – I bought a swimsuit (just a regular old swimsuit) and went swimming at my local pool.

I thought about my pouch for about 15 seconds – and then I was more worried about not drowning and completely forgot about my pouch. Nothing bad happened. My flange did not come unstuck, my pouch did not fill up with water (if your pouch has a filter – cover it with a piece of tape or one of the stickers that comes with your pouch), and people did not notice or comment on my pouch.

Now I swim with a masters swim club and in the open water. I don’t worry about people seeing my pouch in the change room. I just change, like everyone else. Some people do stare, but whatever. No one has ever said anything about my pouch. It’s not visible in my swimsuit. Unless you’ve seen my naked in the change room, you likely don’t even know I have a pouch stuck to my body.

I’ve had zero issues with my pouch when playing hockey. Same deal, no one has said anything about my pouch in the change room. I don’t notice it or think about it when I’m playing.

So, yeah, just do your thing. You’ll be fine. Remember, everyone has something – you just happen to not have a colon and have an ileostomy. You’re still able to do whatever you want. It’s thanks to your ileostomy and stoma that you’re here – so take advantage of it – if there is a sport you used to do or you have always wanted to do – do it.

Oh, one more thing, I never change my pouch and flange and then work-out. I was told not to work-out after changing my pouch – so I don’t. This is just me – you might be different.

Anyway, this is what I’ve learned over the past 6 years of stoma-life and being active. I hope it’s useful to you.

Congrats on being part of the cool kids club – I’m happy to know that you’ve got a second chance and the opportunity to do whatever you want.

On Progress

Today during swim practice I felt like I was fighting the water. On Wednesday during swim practice, I felt like I wasn’t moving forward. On Monday at swim practice, I was exhausted and could barely swim 25 meters.

These are all good things. Yes – that’s right – feeling slow, uncoordinated, exhausted, and confused in the water were all good things for me.

A year ago, I wouldn’t have felt these sensations in the water. I wouldn’t have noticed that I was fighting the water and becoming needlessly tired. But today I did. This is progress.

To be frank, it’s not the kind of progress I want to be experiencing. I’d rather be enjoying the kind of progress that sees me swimming faster, higher in the water, and completely relaxed (and moving out of lane 1).

Today after swim practice I talked to one of the coaches who coached me last season. He confirmed what I was feeling. And in fact he said “your upper body is not in sync with your lower body.” I was also reminded of something this coach said to me last year “swimming is not easy.”

So now the plan is to forget all the things. To focus on a nice long reach, glide, and roll. To find the sensation in my hips/abs that I found last year when I’m reaching.

Forget about the pace. Relax my body. Don’t stress. And just let go.

Easier said than done. But I can confirm that trying to do all the things at the same time – well, it simply doesn’t work. And this applies to everything.

Sometimes when I’m starting a challenging writing project I get bogged down by the complexity of the messaging, the topic, and all the things. This makes it really hard to get started.

The words are forced. My fingers are left hovering over the keyboard. Nothing happens. I start drowning in doubt and lack of confidence.

I’ve learned to recognize this pattern. And now I tell myself “just write. This is what you do. Take it section-by-section.” It has taken me years of writing to get to this point.

It’s very easy to forget that progress is not linear. And it’s easy to forget that some days, it’s just not going to happen. And this is okay. Whether it’s in the pool or on the page.

What is important is the acknowledgement of this. And not spiralling into a not-great place.

Tomorrow I’m back in the pool at 6:30. I know what I’m going to think about (nothing!). I know what I will focus on (relax and reach).

And I’ll remind myself of the really good news – I have lots of progress to make – this means I will get where I want to be.

Can’t wait to be back in the open water with the awesome Britannia Swim Gang

On Confidence

Phrases I’ve said out loud and inside my head this past week:

I’m really really slow

I don’t think I can do it

I’m so tired of being slow

My technique is terrible

I’m trying to boost myself up

Maybe I should quit

I’m nervous

The thing is, I’ve signed up for a big swimming challenge next week and I really want to get back to playing hockey again. And both of these fun things that I really want to do are messing with my head. To the point where my brain is flooded with stress and rumination.

I know, it doesn’t make sense! Or does it? I told myself that I’m on this low-confidence thought pattern because I care about doing well. But is this right? Or am I having these feelings of self-doubt and negativity because I’m looking for a way-out of putting myself in what could be a stressful situation?

I think it’s both. Essentially it’s a mixture of fear and anticipation. Whatever it is, I was struggling to get out of this rut of self-doubt, low confidence, and brain muttering.

And then, last night I watched Kipchoge: The Last Milestone.

It’s not often a movie clicks for me. This one did. Listening to Eliud Kipchoge talk about training, life, running, and hearing from others who know him, helped snap me out of my low-confidence mindset.

If you don’t know who Eliud Kipchoge is, here’s what you need to know – Eliud is the first person to run a marathon under 2 hours. He is the best marathoner of all-time. But he is more than his marathon results, he’s a good person – it’s hard to explain – just watch the movie or the live coverage from Vienna, or read some interviews with him.

Maybe these quotes from Eliud Kiphchoge will help me explain myself better:

No human is limited.”

If you want to break through, your mind should be able to control your body. Your mind should be a part of your fitness.

Mentality is where the success is.”

I would like to tell every living soul in the world that anyone can do whatever they want, all they need is to believe and trust in themselves.”

My secret? I run with my heart and my mind.”

So you get the idea. Anyway, watch the movie – you won’t regret it.

It’s funny as I sit here and think about the quotes I just posted here, I’m reminded of 2008, 2009, and 2010. Back then I was fully in on trying to achieve a big goal. A goal that many people told me was impossible.

But I believed in myself. I believed in my training. I trusted my coach. I had an amazing group of people who reminded me to trust the process and to keep digging hard. And it worked. I did it. It wasn’t easy. There were many tough days – but somehow I kept on going.

Looking back on this time now, I really think it came down to my mind. I believed. It’s funny though when I think back to this time, I do wish I could have had even more confidence and self-belief. I wonder what I could have done then?

A while ago I was luck to talk at the Bushtakah SWEET night. I talked about goals, controlling the controllables, support networks, and self-belief. I guess it’s time I reread my speech and listen to my own advice…

Reset button is pushed. I’m ready.

Oh So Goode in the ‘Goode

I’ve written this blog post multiple times in my head, but haven’t been able to get it out of my brain, through my fingers, and onto the keyboard. This is likely because of my day-to-day routine.

I write all day, everyday. I am very lucky to do this for a job. But some days, some days I just can’t push on and write for fun. Some days I feel like the words are gone and I don’t trust my fingers to give you something worth reading.

I feel like this right now. I’m not exaggerating when I write that I don’t know what will come next. You know how authors talk about their characters communicating through them and feeling their characters come alive on the page? Well, it’s the same thing for me. The words come and I don’t know where they come from – they just come.

Some days the words come easily. And other days. Well, other days I sit and stare. I reread my notes. I scroll through Facebook, Instagram, and Twitter, I drink tea, I pace, I fold laundry, I take a shower, and then the words come (if I’m lucky).

So yeah, this is my excuse for not writing sooner or more often.

Life has been a bit hectic I suppose. A little over a month ago, we moved from our home of 22 years to a new-to-us house in Osgoode. It’s been a lot. A lot of boxes. A lot of planning. A lot of managing. A lot of unpacking. A lot of looking at boxes and avoiding unpacking. A lot of a lot.

But it’s been a good thing. I’m finally feeling like myself again. I truly didn’t realize how on edge and stressed out I was living in the old place. It wasn’t the house. It was the environment. It had changed drastically in the last few years and I truly could not enjoy being outside or even in our house.

And now we’re here. And it’s good. Really good. We have space. The pace is slower. There is a community again. Sure, it’s not all rainbows and unicorns. There are bumps and learning curves. But this is as it should be. If I told you it was perfect, I would be looking through very heavily tinted rose-colored glasses.

And now, now I’ve come to the point where the words have stopped flowing through my fingers. I’ve paused and stuttered. Typed and deleted. So this is where I end. Not the perfect ending but it’s the reality of writing and letting things happen. Kind of like life, I guess.

We like it here

Trying to be Regular

It’s a new month and I thought it made sense to try to get back into the habit of regular posts. Remember when I used to post every single day?

Geez those were the days. I had tales about riding and racing my bike in Belgium, food discoveries, and the highs and lows of trying to get my bike to go faster and faster.

And now here we are. Many years removed from the life in the bike lane. Well, I’m still in it – but not really fully in it.

Life is more now. I’ve finally learned that I’m not a bike rider/racer. I’m a person who has lots of interests and does lots of stuff. The bike is part of me. But it is not all of me. It’s taken a long while to get to this understanding. This is probably a good thing.

So yeah let’s see if I can post at least once a month.

There is some stuff going on that will likely be post-worthy. This reminds me of a key message from CopyCon21 – what is important to you (the content person/brand/company) is not necessarily what is important to your audience.

So yeah, who knows if what is happening with me is post-worthy for you – but it is for me. And since it’s my website, well, you get the message.

Upcoming – moving to Osgoode. But first final packing bonanza (this weekend). And next movers taking all of our heavy stuff away. Then we move. In between there’s the Feist concert. Cyclocross season starts (I’m not racing) – but I’ll be there with you in spirit – yes, you can do it. And I’m splashing around in the pool. Oh and I finally have a library card. Bring on all the books.

Quick edit here: forgot to remind you that Adele’s new album hitting the airwaves on November 19! Woohoo. Can’t wait to listen to my second BFF’s album. Save the date!!!

Learned the fly yesterday. So that’s a big thing. Well, a version of the fly. Maybe more like an uncoordinated semi-drowning taking on lots of water thrashing fly.

Oh, and I’m fully hooked on daily journaling. Every single day I scribble a few sentences or paragraphs in a black note book I keep on the kitchen counter (so it’s visible and obvious to me). This is a great way to calm the brain and get stuff out of my head. Probably also why I’m posting less here – a lot of the stuff is going in a little black book instead of on the big black hole of the Internet.

K – that’s all I’ve got. A lot of rambling. I’d like to blame the cold brew (my latest liquid obsession) – but it’s decaf. So yeah, maybe it’s just me.