No one ever promised life with an Ostomy would be easy….
Having an ostomy is life changing! There’s no doubt about it.
Is life with an ostomy challenging at times? Heck yes! No one ever promised it would be easy, but we have found it gets easier and we have found the challenges have been worth it.
As a caregiver I promise you it has been a huge learning curve as well. My gut reaction as a mom is to want to shield Kaitlyn and keep her in a bubble but that’s not always an option.
We have learned so much and we are still learning but I think there are two key things that I would share with any new ostomate or caregiver.
The first would be to remain positive (easier said than done sometimes, I know) as much as possible. Will you have rough days? Sure! But attitude is everything and it can make a big difference.
The second is always be prepared! Bring those ostomy supplies with you everywhere! It helps so much to ease your mind incase of a leak.
Leaks? Yep they happen! From 2am wake ups to leaks in public places, it can be stressful and overwhelming.
We used to get stressed and honestly that just made a tough situation worse. We now try really hard to stay calm and bring humor to whatever is happening. Leaks at 2am? We might say, “Jim is such a party animal!” (Jim is Kaitlyn’s stoma).
If you are getting frequent leaks and/or skin irritation often, check with your doctor to see what they might be able to do to help.
Kaitlyn had frequent leaks in the beginning and we were able to find a bag that was a better fit for her which helped so much along with an ostomy belt/pouch.
Clothes? Should you cover up your bag or show it off? Only you can answer that. We have let Kaitlyn take the lead and make those decisions as only she truly knows her comfort level.
When Kaitlyn first had surgery she only wanted immediate family to know she had a bag, let alone see it. She had a very short time to get used to the idea of having an ostomy and it took some time for her to want to share that information with anyone.
As time goes on she is becoming much more comfortable with her bag and she doesn’t care so much who sees it or knows she has it. She even went to the beach last week with a bunch of her friends and didn’t feel the need to cover it up.
Which brings us to the following. How do you tell your friends and family about your ostomy? Again, we have let Kaitlyn take the lead with who she wants to know about Jim, and when she wants to tell them.
It can be very scary wondering what the reaction will be when telling people that you now have an ostomy. Will they judge you or make fun of you? I think you will find, as we have, that all your friends and family that love you will be very supportive and so glad that your ostomy is going to help you feel better.
Kaitlyn has the best little group of friends and they are just so very glad she is feeling better and able to be back in school with them.
Are you having challenges with your ostomy? Are you a caregiver that is trying to figure out this new journey? I don’t have all the answers, but I would love to chat with you and maybe we can figure it out together. Please feel free to leave a comment and connect!