Navigating Life with an Ostomy – A Millennial’s Perspective – Calgary AB

To our delight, one of our ostomy product customers contacted us a few weeks ago get to know our company better and to see how she could contribute to the Inner Good community (to which we replied ‘yes please!). Her name is Lindsay and she hails out of Calgary, Alberta. She’s a millennial and a crohn’s warrior. We think her perspective is special because it provides us with a young person’s point of view on dealing with a chronic illness and coming to grips with a life changing surgery.

We encourage you to comment below on Lindsay’s essay and share your perspective too. If you want to share your story, send us a message through our contact form here.

Navigating Year One of Living With an Ostomy

“Show me a hero, and I’ll write you a tragedy”. – F. Scott Fitzgerald

 

I did not know it then, but a succession of unexpected events would alter the course of my life, for the better. The lessons I continue to learn and confidence I have gained, far outweigh the sacrifices and challenges I have endured.

If I had read this statement 7 years ago while navigating the first year of living with an ostomy, I would have rolled my eyes and most likely stopped reading. The idea that someone with a chronic illness and now an ostomy could possibly be happy, confident or feel as though their quality of life had improved, was unimaginable. However, it is not uncommon for individuals whom have faced adversity to come out on the other side of tragedy or setbacks as a stronger, growth oriented and confident person.

I was 17, when first diagnosed with Crohn’s disease. Growing up, I was healthy and rarely ill, despite family members with autoimmune conditions. After a series of medications, hospital stays, clinical trials and 3 biologic medications, I was quickly running out of treatment options. During certain times (seasons) of the year, I would experience “flare ups”, but the sickest I had ever got, was always while traveling. My first temporary bowel resection was after a brief trip to China, where my Crohn’s disease was very active and resulted in yet another hospitalization. A year later at 22, I had exhausted most of my options for therapy. Without a total proctocolectomy (full colon and rectum removal) and permanent ileostomy, I was informed not only my health was at risk, but this time my life. As tragic and challenging as this obstacle was and will be the first few years, ultimately with a little resilience and motivation, it can become an opportunity to re-define yourself and your outlook on life. It is a reset button on who you once were. 

Finding Confidence Again

Being confident as a woman in general is challenging, let alone with a chronic illness/ostomy. With so many external influences bombarding us with images of what the ideal woman (or man) should look like, it is not uncommon to feel as though we could never measure up.

On the other side of this coin, are also the individuals within our specific community of people with chronic illness and ostomies who present to the world that they have managed to embrace or overcome challenges; Whether it is through running marathons, social media ambassadors, climbing the tallest mountains or wearing bikinis to showing off their ostomies to the world. These individuals are who I call the “one percenters” and they exist in all communities and society in general. It is difficult not to look at ourselves and question why we are not that tough, ambitious or open about our condition. However, we are all unique and confident in our own way. Just because I personally have never reached a finish line, top of a summit or managed to walk on a beach with my ostomy out and post it online, does not mean that I haven’t accomplished great things and achieved the same level of confidence and embraced my condition. Sometimes just getting out of bed in the morning is a major milestone achieved. Stop right now and think to yourself one brave or challenging thing you have done recently (no matter how small or insignificant you think it was)… See, you are already more confident then you were prior to that event, and you might not even know it.

Therefore, the type of confidence I speak of is not appearance or accomplishment based, but rather an internal attitude that automatically comes through externally.

But how does one learn or gain this confidence and new attitude in their approach to life?

The following “Tips, Tricks and facts” are some things I did and continue to do in order to remain positive, but also have helped make me more confident than I was pre-surgery.   

Post Ostomy Surgery Comeback Check-list

• Time … give yourself the time to recover and grieve the old you. 
• Set a goal of one thing every day/week that challenges you. Accomplishing this will create confidence internally.
• You can now add the words “resilient” and “adaptable”, to your personal characteristics (on resumes etc.).   
• Change your wardrobe to accommodate the new you, where you are comfortable and feel confident. This is so important.

  When I wear jeans that are tight on my stomach / stoma I am so uncomfortable all day and it is a constant reminder I have an ostomy I need to accommodate for. You also can’t live in sweatpants forever … I’ve tried.

• You have a life experience not many do and it makes you unique, you have a dramatic plot twist in your book of life.  
• People who know your situation automatically think of you as strong and courageous. Surround yourself with people who are supportive.
• Every time you share your knowledge of your disease or surgery you are educating people and creating awareness.
• Be your own advocate, research and find the products that work for you. Keep up to date with new medications, supplies and companies. It can result in a better quality of life.  
• Learn to say NO, to the things and people that don’t bring you joy (you know how precious life is). But learn to say YES, to the things you love, things that might scare you or to new opportunities.  
• You will get frustrated based on inconvenience. Ex.) Sometimes you have to sit backwards on a toilet (70% of the time). Airplanes bathrooms are your worst enemy; go to the bathroom before a flight if you can. Just roll your eyes and be creative.
• Be kind to others, give compliments, be compassionate… people will see you as a positive and confident person and in return people will be kind back, and it will also make you feel good.

Remember that this is your journey; it is neither fair nor easy. But if you can take what you have learned and experienced and find the silver lining, I can almost guarantee that as a result, you will be a person that you and others can be proud of and for every day that you get out of bed and make a move, that internal confidence will come and eventually shine through externally. As for those really tough days, sometimes you just have to “fake it, till you make it”. Finally, take time periodically to reflect on who you were before, who you are now and who you want to become.