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.
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 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.
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).
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.
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.
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.