Unmuted - Tim Reitsma, Living With Crohn’s Disease
Tim Reitsma
Ask him about his colonoscopies! Seriously you can. Having lived with Crohn’s disease for most of his life, Tim opens up about his ongoing journey to help educate and encourage conversation around invisible conditions.
August 2023
Table for two
Sitting across from each other at the restaurant, celebrating our 13th wedding anniversary—we’re finally able to process:
If not for the new medication that became available just in time this January, my body would not have become stable enough for bowel resection surgery. And if not for the life-saving bowel resection surgery that I was able to get in April, my wife Tania might be dining alone today.
It’s been exactly four months since my most recent bowel resection surgery. And recovery has been relatively smooth. Our family is so thankful for the amazing work and compassion of our health care team, and the support that we have received from our community of friends, relatives, neighbours, and even strangers. We look back these challenging past years with acceptance, and we look to the future with new hope, courage and purpose.
Thank you for checking out this section of Steveston People that follows my journey of living with Crohn’s disease. I hope that by sharing my experience openly, more people will learn about this invisible condition, and those affected by the disease will no longer feel alone nor ashamed to talk about it.
August 2023
Invisible Condition
Eliminating stigma, creating a more compassionate and inclusive society
Recently I launched Invisible Condition, a podcast and blog to talk about “unusually normal things”.
What is an “invisible condition”?
An invisible condition is an illness or health condition (physical or mental) that isn’t seen from the outside. This may include, but is not limited to autoimmune disorders, mental illness, neurodiverse conditions, chronic pain or fatigue, trauma, cancers, and brain injuries.
What inspired Invisible Condition?
These past few years was a roller coaster. In addition to being severely sick physically, I was sick and tired of holding it all in, all the fear of judgment by others who lack understanding or awareness about my condition.
With all my appointments I had to manage and endure due to this recent three year long continuous Crohn’s flare—I was done trying to come up with creative ways to avoid talking about my condition in order to make OTHER people feel more comfortable.
So I started to be more open and candid with friends, co-workers, and relatives about what I was going through physically and mentally. Nervously, I started posting on LinkedIn about what I was going through and my frustrations with society when it comes to invisible conditions. To my surprise, SO MANY people responded to tell me that they too had invisible conditions but were too afraid to share, fearing discrimination or losing relationships.
Last winter, I literally could have died if I didn’t get the proper medical intervention in time, and now, after surgery and being on a new drug that has given me some quality of life back, I don’t want to waste it! There’s still no cure yet for my Crohn’s disease, but hey, I gotta at least make it count for something good in this world!
Seen. Supported. Empowered.
Through the power of personal stories, let’s create a world where there is no stigma attached to invisible conditions.
So far in this project I’ve heard from contributors who live with hemophilia, ADHD, colitis—and one guest even suffered a stroke at the age of 18.
Visit the Invisible Condition podcast and blog. And let’s start talking about unusually normal things together!
June 10, 2023
Thank you for supporting the Gutsy Walk Fundraisers!
This year on June 4, 2023, our family will be participated for the second year in a row in the Gutsy Walk to raise funds for Crohn’s and Colitis Canada.
Thanks to generous donors including many neighbours and friends from Steveston, we have raised almost $2000 combined from the 2022 and 2023 campaigns!
Donations contribute to research and programs that support people who live with these inflammatory bowel diseases (IBD).
Here’s an explanation of what is Crohn’s and Colitis from the Gutsy Walk website:
Crohn’s and colitis are autoimmune diseases that cause the body to attack itself, leading to inflammation of all or part of the gastrointestinal tract. People with IBD endure abdominal pain, cramping, gas, bloating, fatigue, frequent and urgent bowel movements, internal bleeding, and unintended weight loss. Living with IBD means living a life full of disruptions. That’s the case for over 300,000 Canadians already.
Feeling “lighter” - Post-Surgery Reflection
May 26, 2023
People tell me I'm looking a lot better these days! And I agree.
I had surgery on April 14th to remove more of my large intestine (an area of my bowels so narrow from chronic inflammation—it was the size of a pin hole) and scar tissue around the area.
While the surgery was a success, there are many side effects to deal with. My guts need to figure out how to work again (think 10+ trips to the washroom), anxiety about eating foods that were once forbidden...and then there's the mental health stuff.
The journey with Crohn's is never over. It may go into remission (thanks to drugs that actually work) for a long period of time but always in the back of my mind is, "Where is the closest washroom?"
I am getting stronger but still not allowed to lift anything more than 10 pounds. My kids are missing their nightly piggyback rides!
The healing will come with time and patience. I am learning to be more patient. Another thing I am learning to do better is setting boundaries. I tend to go all in on something and will give it more time than I have allotted or am being paid for. It's just my nature.
I am learning what to say yes to, what to say no to—allowing my personal values to guide my way.
Crohn’s Q&A with Tim Reitsma
March 24, 2023
Do you ever get told "you look tired"? I hear that all the time…
I am currently still working with my health care providers to get my health stable enough for bowel surgery, but in the meantime, here’s a little Q&A into my world.
Describe your experience with Crohn’s disease over the past year?
Over the past year, living with Crohn’s has been a big challenge. I have been living with frequent obstructions, severe blood loss and continuous discomfort. I have limited my diet in fear of an obstruction, battled intense fatigue due to severe iron deficiency and low hemoglobin.
This past fall and winter, I should have been in the hospital but I masked my pain in order to be with my family for the holidays. Not the smartest thing to do but, honestly, I was tired of this disease getting the better of me.
In November 2022, my doctors were very concerned with my physical and mental state. After yet another colonoscopy, I was informed my entire colon was full of active Crohn’s. There is also a narrowing of my colon due to scar tissue which is the reason for all the blockages.
I was 170 lbs, mentally drained and ready to give up. My doctors prescribed me a heavy dose of steroids (second time in the year), and time away from work. I was also under strict instructions to rid my life of stress (so easy right?) and to gain a minimum of 20 lbs. This was to prepare me for surgery.
My gastroenterologist has determined that I need surgery to remove the narrowing of my intestine as there is scar tissue that has built up over the years from a previous surgery. But before we can, my active disease needs to be under control.
On top of everything, I was offered a severance when I returned to work from a short term disability leave. This was a mutual decision but it really sucked!
Experiencing active Crohn’s, having to prepare for surgery, and losing my job all at the same time made me feel absolutely terrible.
With many iron infusions, a blood transfusion, new medication and consuming way too many calories, I am feeling much better. I am actually excited for my next scope as it will set me up for a surgery date!
As someone living with Crohn’s disease, what are your biggest challenges in each of these areas?
Physical
Energy - Not having the energy to play with my children is devastating to me. I mean, I often joke that I can fall asleep on command and it’s true. I often just need to rest.
Not having the energy to ride my bike is also frustrating. I used to love hopping on and heading out for a bike ride. Whether it's around my neighbourhood or in the mountains, not having the energy has been a big blow to my mental health.
Pain - I can feel when a blockage is about to come on. It starts with a faint discomfort in my right abdomen. My response is to start walking or I hop on my exercise bike! If the blockage is in full swing, the sharp stabbing pains come in waves. Waves of sharp, fierce and piercing knives in my guts. When it’s bad, I am curled up in a ball for hours, or even days!
Mental
I struggle here almost daily. I often feel that people forget I am not healthy. My mind gets so tired and strained that some days I just want to run and hide!
Relational
I get cranky often and it sucks! The lack of sleep, stress and anxiety have strained my relationships at home and with friends. I have been getting better at pausing and taking a breath when I feel my anxiety rise up. It is hard though.
What do you want to hear vs don’t want to hear from others?
Please don’t say “you look tired” or “you look skinny”. I know I do! This is because I live with Crohn’s. Instead, ask, “how have things been going” or “how’s your Crohn’s been lately”. I will answer you honestly. Those who know me know I am pretty transparent when it comes to my illness.
I know people mean well and people have the best intentions. I love that! I would encourage people to think about how their words may land and the intention behind the words.
I have a great friend who will often say, “Dude, you doing OK?” He genuinely cares and I know when he says this, he can tell I am not doing well. He gets it. If I say “yes” and I am not ok, I suck at lying and he knows right away!
What do you worry about most because of your Crohn’s disease?
I am worried about being discriminated against. I have seen it already and have witnessed discrimination against those with invisible illnesses. I worry that as I am job hunting, if I disclose I live with an illness, then I won’t get the job opportunity.
I also struggle with the fact that I may have an accident. Not the car crash type but the not making it to the washroom type. It has happened before and it’s embarrassing.
Gross colonoscopy prep drink mix. Tim's pro tip—chill your glass and straw and drink the liquid cold.
For yourself and others living with Crohn’s disease, what's your hope and vision for the future?
I hope for a future with a cure. Until then, I hope companies will open up their washrooms for us when we come running in. I hope people will continue to grow in compassion. I hope people won’t lose their jobs because of this disease.
My vision is a world where we have normalized conversations around invisible illnesses. Where we won’t feel shame or judged for “looking healthy” on the outside.
June 1, 2022
Accepting Uncertainty
Complications Beyond the Guts
Most people who have heard about Crohn's and Colitis know the diseases to cause problems with the bowels. But that's only part of the story of how the body attacks itself.
Here's a little show-and-tell of some complications that come along with Inflammatory Bowel Disease - joint inflammation, anemia, insomnia, depression, just to name a few.
