Facing Forward Stories shares real stories from parents and parents-to-be living with chronic illness and disability—highlighting both shared experiences and unique journeys. Through these voices, we offer connection, representation, and encouragement, reminding readers they’re not alone and that there’s no single way to keep facing forward.
After ulcerative colitis led to an ileostomy, Kat wondered how her health and ostomy might shape her future family—but today, she’s raising her baby daughter to see differences as a normal part of life, not as deficits.
By talking openly about her ostomy and refusing to let it limit their everyday experiences, Kat hopes her daughter will grow up understanding that bodies can look and function differently.
| NAME: Kat PRONOUNS: She/Her LOCATION: Manitoba, Canada DIAGNOSES: Ulcerative Colitis leading to Ileostomy CHILDREN: 1 child, 7 months old |
What came first for you: chronic illness diagnosis or parenthood?
Chronic illness
What have been the biggest challenges you have faced as a parent or parent-to-be living with chronic illness? How have you adapted to those challenges?
Wondering about how my health was going to affect our family. Would the cost of medication mean we had to sacrifice family vacations? Would scar tissue from required surgeries cause fertility issues? Will my children be embarrassed by my ostomy? Will my husband even want to be intimate with me having a stoma?
Now I think a lot about whether or not to have a reversal and what that will entail. At what age would it be best to get it done, while my daughter is in elementary school? Will she understand that I can’t pick her up for weeks? Do I wait until she’s more independent and is it selfish of me to want to have a reversal earlier? What if I have complications related to the reversal surgery that cause my family to miss out on things if we have to cancel a weekend trip because of pouchitis etc.? Will I resent having other children if it will push back the date of potential surgery? And of course, do I even want to have a reversal?
What does a typical day look like for you and your family? Are there specific tips or systems that help your family function day-to-day?
Right now I am on maternity leave, so our schedule is all over the place. Typically I will wait until my partner is home for bag changes so there is always someone around if my daughter needs something while I have my bag off, but I will also do changes with her around. I sit her in an activity table or jolly jumper so she is entertained and she just watches me. I try not to hide things with my ostomy so that she will just always be used to it as a normal part of mommy. We also do all the “normal” things: eat together, go to the pool, exercise to make our bodies feel good, all of my normal every day things so that she learns we are not limited by mommy’s ostomy, and we talk about it openly as well so that as she grows, she is learning that everyone is different but that differences are not deficits.
How do you talk to your children about your illness?
Right now it’s a lot of children’s books about ostomies, which has been so handy! I also like to wear my bag out, so she will just always see it with cool covers. She has seen me change it, and heard me talk about it openly. So my hope is that as she grows, her questions will be similar to any child trying to understand what people are doing in the bathroom and how bodies function.
One thing that I do worry about broaching is weight. When I was at my sickest, coincidently at the time of my wedding, I was about 50 pounds below my usual weight. By society standards I looked “great”, you could see my collar bones, I had a thigh gap, and my dress had to constantly be brought in. I want to make sure that my daughter understands that I was so skinny (for my body type) because I was so sick, and that being that skinny for me was very unhealthy and not good. I don’t want her to think that we have more value if we weigh less, we want to value health and happiness in our house.
What kind of support has made the biggest difference for you?
Friends and family have been amazing, but the best support has been talking to others who understand what this journey is like. Talking to others struggling with pain, incontinence, trying new medication, dietary restrictions, surgery, bag leaks, all the ups and downs of the specific illness has been so helpful. I was terrified and angry about needing an Ileostomy, but seeing people thriving on social media, listening to podcasts that reassured me I would be ok, those made a huge different for me.
What is something you wish more people understood about parenting with chronic illness?
If I was trying to parent through a flare it would be a completely different ball game. I was so sick for the year leading up to my surgery and I could not imagine trying to parent during that time. I think if that had been the case, I would have relied to much more on my village for support. I could hardly leave the bathroom, let alone the house.
Instead of “what can I do to help?” maybe just bringing over a meal can be helpful. Or saying specifically what you could help with instead of asking a chronically ill person to sift through their foggy brain to figure out what needs to be done. Offer specifics like” “can I take your dog for a walk?” or “do you mind if I do daycare pick up for you?” or “can I mow the lawn for you?” And on the flip side, if you are living with a chronic illness, let people help you! Don’t try to do everything; your body needs rest.
If you could go back to the day of your diagnosis, what would you tell yourself?
You are going to be ok. I know you are terrified and angry right now, but you are going to thrive, this is not an ending.
What does “facing forward” mean to you?
In one sense, I think of having a future focused mindset, things might be hard right now, but this is temporary and we can work towards better days in the future. But primarily I think that it can mean facing things head on without fear. Things can be hard and we can be mad at the hand that we have been dealt, maybe embarrassed by the medical conditions that can be visible at times, but we do not hide away because of them—we stand tall and face the world with pride and whatever degree of strength we have for the battle that day. Out there is someone who needs to see others living and thriving, so that they know they will be ok too.
Here’s where you can connect with Kat online!
- Instagram: @goingpains88
| 🌿 Facing Forward Moments: Kat’s Recent Parenting WIN! 🌿 Right now, it’s just the smile when my daughter sees me. The dishes may not get done, the teeth may make her miserable, things don’t always follow the highlight real, but when she sees me and smiles, I just feel golden and everything is right in our world. |
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