Nobody Warned Me About the Mental Health Part of Getting an Ostomy

I had emergency surgery and ended up with an ileostomy. I knew I would have a bag and a stoma, but I didn't really know what a stoma was or how to take care of it. My friends and family were supportive, but they couldn't fully understand what it felt like to have this new part of my body. They could see it was affecting my mental health.

I had a hard time with my mental health after getting an ostomy, but I found help as I went along. I want to share what that looked like for me. If you're facing this too, you're not alone.

The Struggles I Didn't Expect

After I first got my ostomy, even simple things took more planning. My friends could just text, "want to grab dinner?" and leave right away. I had to think about whether I had my supplies and where the bathroom would be. I used to say yes to everything, but learning to manage my ostomy took time.

At first, I started turning down plans. Thinking about all the details made me tired—where would the bathroom be, what if something leaked? It felt easier to stay home, but I ended up feeling a little disconnected from everyone.

In the beginning, looking in the mirror was tough. I worried people might notice my bag under my clothes. My body felt different after surgery, and it took a while to get used to it. That was five years ago, and now I feel comfortable with how I look.

Getting Help Made a Difference

I wasn't able to return to work for over a year after my surgery. Recovery was difficult. I dealt with complications, dehydration, and food blockages. I spent a lot of time at home, just trying to figure out what I could eat and how to stay hydrated. During this time, I realized I needed more than just physical healing.

Getting mental health support was one of the best choices I made. I worked with both a psychiatrist and a therapist. We used cognitive behavioural therapy and EMDR. CBT helped me handle anxiety and learn coping skills, while EMDR helped me work through the trauma from my hospital stay.

I started taking antidepressants before my surgery, and they help, but they're just one part of what I do. I also go to therapy, practice coping strategies, and rely on my support network. There's nothing wrong with taking medication if you need it.

What Helps Me Now

When my anxiety gets bad, I ask myself what the real worst-case scenario is and how I would deal with it. Most of the time, it's not as serious as my anxiety makes it feel. I also try to think about what I would say to a friend in my place, since I'm usually much kinder to others than to myself.

When I feel anxious, I use a grounding exercise. I name five things I can see, four I can touch, three I can hear, two I can smell, and one I can taste. This helps me focus on the present. It's a simple trick, but it really helps.

I joined a support group that met in person, and it made a big difference. Being around people who understood what I was experiencing helped a lot. That's why I wanted to start an online community, so young people could connect with others facing the same challenges without fear of judgment.

Moving Forward

Now, I appreciate my stoma because it keeps me healthy. I named it Molly, after the strong woman in the movie Molly's Game. Giving it a positive name helped me see my ostomy as something that saved my life, not something that took it away.

My life has changed since surgery. It's not the same as before, but I'm learning to accept that. Sometimes I still feel grief or anxiety, but I'm better at handling it now. I have tools that help and people who support me.

If you're dealing with this too, remember that healing doesn't always go in a straight line. Some days are harder than others, and that's okay. You can struggle and still make progress. Reach out for help if you need it. Talk to someone, find a therapist who understands chronic illness, or join a support group. You don't have to face this alone.

I wrote this because when I was struggling most, I couldn't find anyone speaking honestly about the mental health side of having an ostomy. Your struggles matter. Your feelings are real, and you deserve support. Things have been tough, but I've tried to stay positive through it all. Keep going. It really does get easier.