ostomy

Whether you’re living with a colostomy, ileostomy, or urostomy—or supporting someone who is—this is a safe, judgment-free space to share experiences, ask questions, and find real-life tips for daily living. From managing leaks to navigating diet, relationships, and body image, we’re here for it all. Led by someone with 16+ years of personal experience, this group is about community, resilience, and practical support. You’re not alone—and you don’t have to figure it all out on your own. Let’s connect, learn, and support one another through every twist, turn, and bag change.
#Ostomy #ostomysupport

On a hot summer day in June, I found myself standing at the base of the Koko Head trail in Hawaii, staring up at what felt like an endless staircase to the sky.

This hike is legendary — 1,048 old railway-tie “steps” climbing straight up a volcanic crater. There’s no shade. No bathrooms. Just blazing sun, dusty tracks, and one seriously steep climb.

And there I was, with my two little girls — ages five and seven — ready for what I thought would be a quick photo op. I honestly didn’t plan to hike the whole thing. I figured we’d climb a few steps, snap some pictures, and call it good.

But suddenly, my daughters were determined. Their eyes lit up. They were buzzing with energy. What started as a casual glance at the staircase turned into a full-blown family adventure.

So up we went — me, my ostomy, and my two unstoppable little hikers.

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The Realities of Hiking With an Ostomy

If you have an ostomy, you know adventures come with extra planning. Hiking Koko Head wasn’t just about putting one foot in front of the other — it was also about making sure my ostomy stayed secure and I felt confident.

Here’s what I faced on that trail:

✅ Sweat and Heat
Sweat can weaken adhesive, leading to leaks. And on Koko Head, there aren’t really places to step off the trail or hide in the woods to manage your pouch discreetly. Planning ahead is key.

✅ No Bathrooms
Emptying your pouch before starting a hike like this is a must. There’s nowhere to go up there.

✅ Physical Strain
Climbing over a thousand steps is no small feat. Supporting your abdomen is so important to avoid strain on your stoma and reduce the risk of a parastomal hernia.

✅ Staying Hydrated
Hydration is critical — especially if you don’t have a colon. Without a colon, your body loses fluids much faster. I always carry way more water than I think I’ll need. Even on shorter hikes, dehydration can sneak up quickly and leave you feeling weak, dizzy, or sick.

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My Secret Weapon: An Ostomy Belt

One thing made all the difference for me on Koko Head: wearing an ostomy support belt.

My belt kept everything snug and secure, even with all the bending, sweating, and climbing. It reduced bouncing, protected my stoma, and helped me feel safe and confident.

And there’s research to back this up:

“Wearing an ostomy support belt significantly improves comfort, confidence, and quality of life, while reducing fear of leaks or pouch dislodgement.”
— Pittman et al., NIH National Library of Medicine

Another study from the University of Miami (2023) showed that belts can reduce hernia risk and help people stay active — something that’s close to my heart.

If you’re looking for a good belt, I personally recommend checking out Stealth Ostomy Wear. They make high-quality belts designed for active lifestyles, and mine made a huge difference on this hike.

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My Tips for Hiking With an Ostomy

If you’re thinking about tackling a trail like Koko Head — or any outdoor adventure — here are some things that worked for me:

✅ Wear an Ostomy Belt or Band
It’s worth it for security and peace of mind.

✅ Pack Extra Supplies
Always bring spare pouches, barrier rings, adhesive wipes, and disposal bags.

✅ Dress for Success
Choose breathable, sweat-wicking clothes that won’t rub against your appliance.

✅ Empty Your Pouch Before You Go
Start with as little output as possible.

✅ Stay Hydrated
Especially if you don’t have a colon. Bring plenty of fluids to stay ahead of dehydration.

✅ Know Your Limits
Listen to your body and rest if you need to.

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Keep Climbing

I’m proud to say I reached the top of Koko Head with my daughters, sweaty but victorious.

The view from the summit was incredible. But the real victory was showing myself — and my kids — that an ostomy doesn’t define my limits.

If you love hiking, don’t let your ostomy hold you back. With preparation, the right gear, and some determination, the trail is yours to conquer.

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References:
• Pittman, J., Colwell, J., Gray, M., et al. (2022). The Impact of an Ostomy Support Belt on Quality of Life and Comfort. NIH National Library of Medicine. PMC8768503
• University of Miami. (2023). Impact of Ostomy Support Belts on Physical Activity and Hernia Prevention. Surgeries, 5(1), Article 11.
#ostomybelt

Does anyone have recipes for me. I have a new Ileostomy w colectomy recipes pls🥘🍔🍳🌮🍝im so hungry # ##Ostomy
#MultipleHealthChallenges
#InflammatoryBowelDiseaseIBD #CrohnsDisease #Recipes
#nutrition

I feel broken. I spend all day dealing with my ileostomy. My friends and most of family are done giving almost no support, a few texts and then nothing.
#CrohnsDisease

Had mine since 19 (10 years now) doesn't appear to be very common in my age bracket. Older and younger people (whilst both having unique insights and experiences to offer); typically have pretty different lifestyles.

So anyone in their late 20s or early 30s have an Ostomy? #Ostomy #Colitis #CrohnsDisease #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS

Hey everyone! Looking for advice as I prepare for ileostomy placement/surgery for the first time after being diagnosed with crohns 8 years ago. I’ve failed 3 biologics and surgery has become my only hope for some semblance of normalcy. Or should I say stability? I’m looking for advice or stories from everyone who’s had or has an ostomy. I’m worried about everything, particularly intimacy issues after, comfort, pain, self conscious thoughts and feelings

#CrohnsDisease #Ileostomy #Ostomy #InflammatoryBowelDiseaseIBD #Colitis #Humira

I am getting over a cold this week and have found that being sick with my ostomy has meant that my #Ostomy output has gone up, and my baseline lethargy has increased significantly.

It seems like as I get older with IBD that it takes more for me to recover from these common viruses that we all experience from time to time. So, I spent the past week not doing much and just focusing on resting to get over the cold, but I wonder is there more I could be doing to help my body when I am sick? What tips and tricks do you all have when you have a cold?

#CrohnsDisease #InflammatoryBowelDiseaseIBD