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

It was 2 AM, and I was scrolling through Instagram, watching friends post about their weekend while I was home, anxious about my ostomy. I had so many nights like this. Nobody around me got it. They thought once you're healed from surgery, everything's fine. They had no idea how much the mental health stuff messed me up.

At the beginning, I struggled with how I felt about my body. Looking at my stoma was hard. My body and health had deteriorated so much before the surgery that recovery took a long time. I had complications. It was more than a year before I was strong enough to go back to work. Meanwhile, my friends were out having fun, and I was stuck at home feeling frustrated. I was with my long-term partner, which I'm grateful for, but intimacy took time to adjust to.

I'm really passionate about mental health. The mental health side of having an ostomy is something nobody prepared me for, and I struggled for a long time before I got help. I want to share what that journey looked like for me. The grief, the anxiety, the depression, the body image stuff, finding therapy, trying medication, learning what helps. I'm writing this because when I was at my lowest, I couldn't find anyone talking honestly about how hard this is. If you're going through it too, I want you to know you're not alone.

The Grief That Never Really Goes Away

I didn't have a choice about my surgery. It was an emergency ileostomy. I woke up with a bag attached to my body and had no idea what had happened or what to do. There was no time to prepare, no time to process, no time to decide if this was what I wanted. I just woke up different.

My friends text "want to grab dinner?" and they're out the door. I have to run through a mental checklist first. Do I have supplies? Where's the bathroom? How long are we going to be there? I used to just say yes to everything. Now I need time to prepare for even the smallest things.

I'll be having a completely normal day, and then I see someone in a two-piece bathing suit. I used to wear those all the time. I'm getting better at wearing them now if the bottoms are high waisted, which feels like progress. Or I'm packing for a trip, and my suitcase is half full of ostomy supplies, while my friends threw a few things in a bag and walked out the door. It's been years since my surgery. Sometimes I watch people go through their day without thinking about their bodies and feel a bit envious. But I've also learned to plan really well, which has its own benefits.

Your twenties are supposed to be when you figure out who you are. Mine got interrupted by ostomy surgery. The person I was before no longer exists. But I'm learning that the person I am now is stronger than I thought. It took time to get here, and I'm still figuring things out. Some days I feel like I have no idea who I am. On other days, I can see how much I've grown through this.

Everything takes more thought now. Getting dressed means thinking about whether my bag will show. Going on a date out means choosing something to wear that won't reveal my bag. Staying over at someone's place means planning ahead. It's exhausting to think about my ostomy so much. But I've also gotten really good at planning, and that's helped me do things I didn't think I could do anymore. The backup plans in my head used to feel like a burden. Now they're just part of how I take care of myself.

When I Didn't Even Realize I Was Depressed

I started saying no to everything. My friends would invite me out, and I'd make up excuses. The truth was, thinking about all the logistics made me feel exhausted before I even left the house. Where's the bathroom going to be? What if I need to change my bag and there's nowhere private to do so? What if something leaks? Staying home was just easier.

I felt so disconnected from everyone. My friends would complain about work or their annoying colleague, and I'd sit there thinking they had no clue what real problems were. I wanted spontaneous road trips. I wanted to go out without a backpack full of supplies. I wanted to feel confident in my own skin. My twenties weren't supposed to be like this.

Everyone around me was moving forward. Getting promotions, getting engaged, travelling. I felt frozen. Like, my whole timeline got messed up by surgery, and I'd never catch up. I still feel like that sometimes. But I've also realized I'm moving forward too, just on a different timeline. And that's okay.

My Brain Won't Stop

Where's the bathroom? What if my bag leaks? What if people notice? That's what goes through my head when someone asks if I want to hang out. I sometimes turn things down, but I've been getting better at saying yes. Is my bag too full? Can people see it through my shirt? Does it smell? I check it more than I need to. But I'm working on trusting myself more and checking less.

The anxiety still hits me sometimes. I'll be at dinner, and my stoma makes noises. My heart starts pounding. I can't breathe. I'm sure everyone can hear it and knows. But I've learned ways to calm myself down, and the panic passes faster now than it used to. I'm not perfect at managing it, but I'm better than I was. The grounding techniques I've learned actually help, even when I don't think they will.

Accepting My New Body

At first, looking in the mirror was really hard. I worried about whether people could see my bag through my clothes. I'd look at other people my age and feel envious that they didn't have to think about this stuff. Those feelings were really intense at the beginning.

One thing I specifically struggled with was not being able to just shower easily anymore. I prefer to shower with my bag off because I feel free without it on, but then the shower is messy. If I shower with my bag on and blow dry the adhesive after, I get skin rashes. Everyone is different, but for me, I'm still figuring out what works best.

My body felt different after surgery. It took time to adjust. I can look at myself now without immediately feeling upset. Most days, anyway. Some days are harder than others. I'm working on accepting my body with an ostomy. I try not to be so hard on myself about it. It's a process, and I'm making progress.

Work Became So Much Harder

I'd sit in meetings thinking about bathroom logistics. It was a small office, so I worried about timing and smell. I worried about my stoma making noises in meetings or orientations. My brain would be screaming about my ostomy instead of focusing on what I was supposed to be doing.

I didn't tell anyone at work for a while. I kept thinking they'd treat me differently if they knew, or maybe they'd think I couldn't do my job properly. I was already exhausted from managing my ostomy and then having to pretend everything was fine at work just made it harder. When I finally told a few people I trusted, it actually helped. It meant I didn't have to hide anymore, which was a relief I didn't realize I needed.

I felt like everyone else at work had their lives together while I was struggling. I started putting pressure on myself to be perfect at everything. I was exhausted trying to manage my ostomy while keeping up at work. I still push myself pretty hard, but I'm learning to be more realistic about what I can handle. It's getting easier to give myself grace.

My Friends Were There for Me

I was really lucky with my friends. They supported me through recovery, even when I was a mess and didn't know what I needed. When I had to cancel plans because I wasn't feeling well or was too anxious, they got it. They never made me feel bad about it.

They asked questions about my ostomy, which I appreciated. It meant they actually wanted to understand what I was going through. They made accommodations without me even having to ask sometimes. Like if I had a bag leak and had to leave to shower and change, or if I wanted to sleep on the bed close to the bathroom in the hotel.

They couldn't fully relate to what I was going through because they didn't have ostomies, but they tried. And honestly, that meant everything. Having people in my life who didn't run away or treat me differently made the mental health stuff a bit more bearable.

Intimacy in a Long-Term Relationship

I was in a long-term loving relationship with my partner when I had my emergency surgery. I didn't have to worry about when to tell someone or whether they'd accept me. My partner was there through everything. But that didn't make the intimacy stuff any easier.

I had a long recovery, and during that time, intimacy took some adjustment. My partner was incredibly supportive and loving, but the struggle was all internal. I had to work through accepting my stoma and what my body looked like now. I had to get comfortable being intimate with my ostomy.

Even with someone who loved me and wasn't bothered by my ostomy, I felt self-conscious at first. I worried about noises, smells, the bag showing. It took time to get comfortable again. We worked through it together, and while I'm still learning to be fully at ease, it's gotten so much better.

When I Knew I Needed Help

I couldn't go back to work for more than a year after my surgery. I had one issue after another. Recovery was so hard. I was always dehydrated. I got a few food blockages and had to completely change my diet. I was so weak I could barely walk to the end of the hallway.

I was depressed about all these new problems piling up. I'd watch people out doing things, working, being busy with their lives. Meanwhile, I was stuck at home struggling with my body and trying to figure out basic things like what I could eat without getting a blockage or how to stay hydrated.

Sometimes when I would drink alcohol, I'd have a hard time because I didn't know my limit with an ileostomy. Having a stoma dehydrates you, and alcohol dehydrates you even more. That was a whole new problem to figure out. It felt like everything about my body had changed and I had to relearn how to just exist.

Looking back, reaching out for mental health support was one of the best decisions I made. I kept thinking once my body healed, my mind would catch up. But I realized I needed help working through everything. If you're experiencing persistent sadness or struggling to cope with all the changes, getting support can make a real difference. It did for me.

What Helps Sometimes

I keep ostomy supplies in my bathroom and take extras on trips. I always pack some in my carry-on just in case. I've revamped my closet a bit to have comfy clothes that fit well with my ostomy. That's my choice, though. Some people are totally fine with their bag showing. Everyone's different with what makes them comfortable.

My anxiety is mostly when I go through airport security or when my bag leaks. But I've gotten better at managing it. I took cognitive behavioural therapy courses and did lots of therapy to help myself work through the anxiety. The CBT tools actually helped me learn to reality check myself when my thoughts spiral.

When my anxiety spirals, I try to ask myself what's the actual worst-case scenario and how I would handle it if it happened. Usually, when I think it through, I realize it's not as big of a deal as my anxiety is making it seem. I also ask myself how many times my biggest fear has actually happened. Usually, the answer is never or maybe once.

Sometimes I'll think about what I'd tell a friend in my situation. I'm way kinder to other people than I am to myself, so imagining I'm giving advice to a friend helps me be gentler with myself. Or I'll zoom out and ask if this thing I'm worrying about will matter in five years. Usually it won't.

I joined an in-person support group, which was really helpful. During COVID, it was hard because most people didn't want to meet in person, so I had to find other ways to connect. But having people who understood what I was going through made a huge difference.

Getting Professional Help

A psychiatrist followed me at the beginning as an outpatient because I went through a lot of trauma in the hospital. Having that psychiatric support right after everything I'd been through was really important. It helped me process the trauma of waking up with an ostomy I didn't know I was getting.

Then I went back to my previous therapist to continue working with her. I was lucky I already had someone I trusted who knew me before all of this happened. We did CBT and EMDR therapy together.

The CBT (cognitive behavioural therapy) helped me manage my anxiety and develop coping strategies for dealing with all the changes. It's basically learning to identify unhelpful thought patterns and replace them with more balanced ones. The EMDR (eye movement desensitization and reprocessing) was for processing the hospital trauma and everything that happened. It uses eye movements to help your brain process traumatic memories. Both types of therapy were helpful in different ways.

In therapy, we talked a lot about the grief of losing my old life and my old body. We worked on managing my anxiety when it spirals. I'm still working on accepting my body, probably always will be. I learned how to communicate better with the people in my life about what I need. And I'm trying to figure out how to build a life that includes my ostomy without my ostomy being the entire focus.

Medication as Part of Mental Health Care

I had been on antidepressants before because of my illness. But I had to start on a higher dose before my surgery because my symptoms got pretty bad. Sometimes medicine helps in situations where you need it.

I made sure to also do other things to cope. Medication wasn't the only thing I was relying on. I did therapy, I worked on coping strategies, I built my support network. Medication was just one part of taking care of my mental health.

I'm still on the medication and I'm not embarrassed by it. It's helping me manage what I need to manage so I can actually work on the other stuff. There's no shame in taking medication when you need it.

I'm not a doctor. I'm just telling you what worked for me. Medication helps, but it's not the only thing I do.

Learning to Accept My Body

You don't have to love your ostomy. I don't love mine most of the time. I'm working on accepting it, which feels more doable than loving it. Some days I can appreciate that my body survived ulcerative colitis. My ostomy literally saved my life. Other days that doesn't help at all.

I named my stoma Molly, after the strong female character from the movie Molly's Game. It helped me feel strong instead of broken. Giving my stoma a name made it feel less like something foreign attached to me. It's a small thing, but it helped.

When I catch myself being mean about my body, I try to stop. Sometimes I can redirect those thoughts. Sometimes I can't, and that's okay too. I try to notice the wins, like wearing a shirt I was too scared to wear before, or looking in the mirror and feeling okay with what I see. I'm not defined by how I look or by having an ostomy. Some days I really believe that.

Some days my ostomy still feels like it takes up too much space in my life. I get tired of thinking about it all the time. But I'm learning to balance managing my health with actually living my life. It's a process, and I'm not perfect at it, but I'm getting better at not letting my ostomy be the only thing that defines me.

I'm creating new traditions and experiences that work with my current reality. I'm not waiting to get back to who I was before surgery. That person doesn't exist anymore. Healing isn't about returning to who I was before. It's about bringing all the parts of my experience together and becoming who I actually am now.

Finding Community

I found an in-person support group, which helped a lot. But when I looked for online support, I found a Crohn's and Colitis disease group. I didn't feel like I fit there as much because there was judgment about getting an ostomy. It was hard to be in a space where people saw ostomies as something to avoid or be ashamed of.

That's why I wanted to create an online community for people to have access to. A place where having an ostomy isn't treated like a failure. Where young people can connect with others going through the same thing without judgment. Somewhere you can ask questions, share struggles, and just exist without feeling like you need to defend your ostomy or justify your experience.

Community matters. Having people who understand what you're going through makes such a difference. Whether it's in person, online, or both, finding your people helps you feel less alone in all of this.

Tools That Help Me Manage

I use a grounding technique when I feel anxious. I name five things I can see, four I can touch, three I can hear, two I can smell, and one I can taste. It helps bring me back to the present moment and out of my head. It's simple, but it works.

I check in with myself every week. I ask what went well with my ostomy management, what challenged me and how I handled it, what I need more support with, how connected I feel to other people, and what one small thing I can do for my mental health this week. Taking a few minutes to reflect helps me notice patterns and take care of myself.

When I'm processing difficult thoughts, I write them down. I note what triggered the thought, what I'm thinking, what emotions I'm feeling, evidence for and against the thought, and then I work toward a more balanced perspective. Seeing it all written out helps me understand my thoughts better and respond to them in healthier ways.

Moving Forward

I'm not going to tell you that everything gets better overnight or that you'll suddenly love your body and your life will go back to normal. My life is different now. It's not what it was before surgery, and I'm learning to be okay with that. Some days I'm more okay with it than others, and that's part of the process.

The grief comes and goes. The anxiety is still there sometimes. But I'm better at managing it now than I was at the beginning. I have tools that help. I have people who support me. I've learned what works for me and what doesn't. That's progress, even when it doesn't feel like enough.

If you're going through this too, please know that healing isn't linear. Some days will be harder than others. But you're allowed to struggle and still be moving forward. You're allowed to have bad days and still be doing okay overall. Working on your mental health takes time, and that's okay.

Get help if you need it. Talk to someone. Find a therapist who understands chronic illness. Join support groups. Take medication if it helps you. Build your support network. You don't have to do this alone, and you don't have to have it all figured out right now.

I wanted to write this because when I was at my lowest, I couldn't find anyone talking honestly about the mental health side of having an ostomy. I want you to know you're not alone in this. Whatever you're feeling, whatever you're going through, other people have been there too. Your struggles are valid. Your feelings are real. And you deserve support.

Things have been hard, but I've tried to stay positive throughout this life change. I've learned that it's okay to struggle and still be moving forward. You're stronger than you think. I know that might not feel true right now, but you're here, you're reading this, you're trying. That matters so much. Keep going. It does get more manageable.