I am the proud mother of an Ostomate
What is it like to be the mom of a child with an ostomy? That’s not an easily answered question.
It’s emotional, stressful, scary (especially at first) but it also has allowed my daughter and I to bond in a way we likely never would have otherwise.
Like most moms, I have never dreamed I would be the mom of a child with a chronic illness like Crohn’s Disease. Not to mention, a child with an ostomy to care for as well.
As a mom I had always felt it was my job to kiss boo boos and make everything better. Unfortunately, there are no kisses that can make this go away.
When the doctor said she felt very strongly that Kaitlyn needed to have ileostomy surgery, one of my first thoughts was, I don’t know if I can do this.
We had one day to mentally prepare ourselves and she had surgery the following day.
Then, I really had to put myself in my daughter’s shoes. She was so scared and going through so much that I really had to put my fears aside.
She battles IBD daily and she was the one facing surgery and living with an ostomy, not me. It was still scary but that helped put things into perspective.
The great news is that the ileostomy has been a huge part of helping Kaitlyn feel so much better and get back to being a kid again.
We have learned SO much in the almost nine months since Kaitlyn’s surgery. I think we still have a lot to learn and as we talk to other ostomates it’s neat to pick up tips and ideas along the way.
There is also so much I wish I had known prior to K’s surgery so I hope that I can help others as they prepare for this journey. Some of the key things I believe are important in being an ostomy mom I will explain below.
Always find the humor in your situation.
I think the best thing we can do is to try to keep some humor in our lives (this goes for whatever you may be going through).
Before we even left the hospital, Kaitlyn had named her stoma “Jim” and he became a new member of the family. We highly recommend you name your stoma!
We made Jim his very own Halloween costume (a jack o’ lantern drawn on an ostomy bag), we jokingly say, “it’s time to empty your Jim bag” and tell him to “be quiet” if he gets a bit noisy.
Keep your supplies organized and be prepared for emergency changes.
We have found organizing our ostomy supplies in one spot to be so helpful especially when we realize we need to do a quick change to get out the door on time. Also having everything organized will help you easily see if you are running low on anything and that will allow you plenty of time to re-order.
We carry supplies with us wherever we go, should the need arise for an emergency change. We hope to never have to use it but just knowing we have it makes us more comfortable going about our day and alleviating unneeded stress.
Find support, you are not in this alone.
Whether you are a patient with an ostomy, or parent of a child with an ostomy it can be a very lonely feeling. We are very grateful we now have a wonderful support system of patients/parents both online in support groups, Facebook pages (for parents and patients) and in person support groups.
It helps so much to find others going through a similar situation. I would be more than happy to talk to any caregivers or patients that have questions or want to talk about life with an ostomy.
There are days that it’s still extremely hard, but it does get easier and has almost become our new normal.
Doing the few things I mentioned above, have definitely helped ease some stress for us and make me feel more prepared to handle living with whatever comes up daily as an ostomy mom.