(This used to be a race calendar but I thought a new page was in order…)
I had my colon removed on August 8, 2016. I now have a permanent ileostomy. I’m waiting for my second surgery to remove my rectum. This surgery will likely happen in April – June 2017.
So far life with an ileostomy is going really well.
Here is some writing I’ve done so far about my newfound life:
- Two Weeks In (August 23, 2016)
- Five Weeks (September 13, 2016)
- What I Learned in the First Two Months as an Ostomate (October 25, 2016)
- Four Months Post-Surgery Vicki Thomas Travels to Belgium for a Bike Race (January 6, 2017)
- On Being Active with an Ileostomy (February 20, 2022)
Here are some resources that you may find useful if your or someone you know has an ostomy or is a soon-to-be ostomate:
If you have questions about life with an ileostomy, the surgery, the recovery, the stoma, the pouch, really anything – don’t be shy: email me. I know what it’s like to have questions and not know who to talk to. If I can help, I will. I’m no expert. I’m just a person who has first-hand experience.
I’ve decided to write more about ostomy life. I’ve had my permanent ileostomy since 2016 and had my rectum removed in 2018. Along the way, I’ve learned a lot about how to live an active and full life with a pouch attached to my abdomen.
Day-to-Day Living with an Ileostomy
The good news is daily life with an ileostomy isn’t that different from life with a functioning colon and rectum. Yes, it does take some getting used to – but once you get use to your stoma and pouch, you likely won’t even notice them.
In fact there are times when I forget I have a pouch attached to my abdomen. Now, it’s just life – a really good life. Here are my tips and lessons learned so far about ileostomy life:
For the first few weeks after surgery, I found it best to wear loose fitting clothing. I wore pants with a high waistband to avoid any pressure on my stoma and the surgery site. One tip if you’re a woman is to size up your leggings – yes, they’ll be loose in the leg but much more comfortable on your abdomen.
I now wear pretty much whatever I want. I find for pants with a zipper/button, I prefer the waist to be above the top of my pouch. If I’m wearing track pants or similar, I’ll often wear these below my stoma, so my pouch is on the outside of my clothes.
I do wear “skinny” jeans and jeans with spandex – not my favourite, but they are comfortable and there really aren’t any issues with the pouch.
Sometimes your pouch can “pancake” this is when the output stays in the top of your pouch and doesn’t drop down. This happens most when wearing tighter clothing. To help prevent this, I always cover the filter on my pouch (Coloplast Sensura Mio 1-piece) with a filter sticker and I keep some air in my pouch.
And to answer the big question – no one can tell I have a pouch. Even when it’s on the outside of my clothes. Really, most people aren’t looking at you that closely… In fact, most of the people I swim with have no idea I have a pouch.
So don’t worry – wear what you want and what makes you feel like you.
The first time I got on a plane, I was nervous. I had this idea my pouch would fill with air due to the cabin pressure.
This did not happen! In fact, I think it’s an urban legend. I’ve had zero problems flying to Belgium (5+ hour flight), New York City, and elsewhere.
However, it’s important to remember that airplane bathrooms are very small, awkward, and generally not awesome. So, I always adjust my eating when I fly – I eat foods that I know will take their time to come out or will be more fluid, making it easier to empty my pouch.
When it comes to food on the plane… well, airplane food is not great. So even before I had my colon removed, I would bring my own food. I do the same now.
I’ve also taken the train. Same deal – bathrooms on the train are bigger but balance can be an issue.
One thing to think about when traveling – particularly long travel days is your hydration. Us ileostomates are prone to dehydration. So bring your own water and whatever electrolyte tablets/powder you prefer. I use Hydralyte tablets – they’re easy to transport, have a mild flavour, and keep my electrolytes in balance.
Do it! Get out of the house. Meet up with your friends. Attend concerts, go to the movies, eat in restaurants, go to museums – do whatever you want.
Just like in the before-times when you had colon (that likely made life very unpleasant for you), you do need to do some planning. Think about bathrooms and accessibility.
Don’t hesitate to use the disabled bathroom. Your ileostomy is a disability. The fact is, it takes longer to empty your pouch than going to the bathroom “normally”.
I think you’ll find you have more freedom to get out of the house and be with friends and strangers now that you have an ileostomy. You don’t have to worry about the unexpected! (Happened to me so many times that I started wearing adult diapers. I don’t have to do this anymore – hooray!)
I even gave a speech in front of over 500 women – I talked about how I ended up at pouch life and the lessons I’ve learned along the way. I even showed it to the crowd! So yes – you can do whatever you want!
Before I got my pouch and ileostomy, no one explained the ins and outs of emptying it to me… Here is what I have learned:
- Not all toilet paper is created equal. The flimsy 1-ply in must public bathrooms is useless for you and me. You need toilet paper that has some strength to it.
- Bring your own toilet paper with you. I always have pieces of folded toilet paper in my pants pocket, jacket pocket, cycling jersey, swim bag, etc. I have multiple ziploc bags containing carefully folded pieces of toilet paper – I always have one with me when I’m cycling, I’ll put one in my bag when I go out, I have one in my swim bag, etc. Generally, I use 2 – 3 squares of toilet paper – I fold these in half and then in half again.
- You need to clean the inside of our pouch with toilet paper. It is important to have your toilet paper ready and easily accessible before you empty your pouch. In every bathroom in my house there are pieces of toilet paper on the bathroom vanity – so I’m ready. There is nothing worse than waking up at 2 a.m., emptying your pouch, and realizing you forgot to get your toilet paper ready…
Remember you can’t control your small intestine – so you need to be ready to empty your pouch. Having toilet paper that works can help ease any stress and make it much easier to empty your pouch.
This is a tricky one. I reread one of my earlier posts about ileostomy life and at that time I was eating whatever I wanted. This is the general rule for most people.
However, something has changed for me and I struggle to eat a lot of foods. This is me – and likely won’t be you.
With time you’ll find your safe, always trusty foods that you know you can digest.
You’ll learn which foods move through you quickly (spicy foods and oatmeal for me), which foods create liquidy output (oatmeal in all forms and Indian food for me), which foods create thick output that can be hard to get out of your pouch (yogurt, butternut squash, and cooked carrots for me) and which foods are slow movers – you can eat these foods and know you won’t need to empty your pouch for a while (white bread with natural peanut butter, graham crackers, crumpets, Cheerios, eggs, and banana bread for me).
This is all completely individual.
I’ve learned to plan my food around what I have going on in my life. If I don’t have swimming in the morning, I’ll generally eat whatever I want the day before. If I’ve got swimming or an early morning bike ride, I’ll eat a very easy to digest supper.
One trick I learned from one of the amazing surgeons who removed my rectum is to eat plain salted potato chips when I have very liquidy output or diarrhea (yes, it can still happen). There is something about the combination of starch and salt that helps slow output and thicken the output. Some people eat marshmallows for the same reason – the gelatin in marshmallows works the same way.
Blockages are not fun. They are painful. If you notice you haven’t had any output in a while and there is swelling around your stoma – you might have a blockage.
There are some no-go foods: mushrooms, corn, peas, celery, and bean sprouts – these are not ileostomy friendly. These types of food can cause blockages – essentially blocking anything from coming out of your stoma.
Some people (me) struggle to digest raw and cooked vegetables, most fruits, beans, lentils, and other foods including brown rice, seeds, and nuts. For me, these foods can cause blockages. Everyone is different though.
If you do have a blockage, some tips to help relieve it include: drinking warm liquids like clear tea or coffee, drinking Coke (remember this stuff can disintegrate nails), lying on your side with your knees pulled into your chest, gently pushing on the area around your stoma, and walking around.
Do not ignore a blockage – they are pretty darn painful so it’s hard to forget you have one. If it lasts for a bit and you’re not getting relief – go to the E.R. Tell the triage nurse you have an ileostomy, that you’re in pain (10 out of 10 on the pain scale), and that you haven’t had any output for however many hours.
Getting Through the Day
Your small intestine has a mind of its own. You cannot control it. It doesn’t matter what you do – you can not get it to do what you want.
You might be someone who has an active stoma, so you’re emptying your pouch frequently during the day and through-out the night. This is me. I empty my pouch around 12 times a day and I always have to get up at least twice through the night.
So I plan – I always empty my pouch before I leave the house, before meetings, and generally before anything where I need to be still or don’t want to be interrupted.
I find the quietest time for my pouch is once I’ve been up for a couple of hours. Because I do a lot of sports, this means I try to do things like swimming, cycling, or playing hockey in the morning. Depending on the duration, I can do these on minimal food and not have to worry about my pouch filling up.
With time you’ll get in a groove. You’ll learn what works for you and what doesn’t. It will take time. Living with an ileostomy takes getting used to.
You can do it! You can have a full life. You can do all the things you had to put on hold because your colon was making your life unpleasant.
Hopefully this information is helpful. You can always email me with your questions or ask me to write about a specific topic.
Welcome to the cool kids club – your stoma is your friend for life and thanks to your stoma you can do what you want when you want to. I nicknamed my stoma Reset because thank to my stoma, I was able to hit the rest button on my life and get back to living.