When I woke up with a stoma, nobody handed me a practical cheat sheet. I learned everything the hard way — through leaks, skin breakdowns, a few public scares, and a lot of trial and error. What I would have given for someone to just say: "Here's exactly what works."
These are the 10 tips I share with every new ostomate I meet. They're not from a textbook. They're from my life — and from the hundreds of conversations I've had with others in this community.
Build a Pouch-Change Routine — and Stick to It
Consistency is your best friend. I change my pouch first thing in the morning, before I eat or drink anything. Output is lowest then, which means fewer interruptions and a cleaner seal. Pick your window and protect it. Within a few weeks, the whole process takes under 10 minutes — but only if you don't rush the learning phase.
Prep Your Supplies the Night Before
Lay everything out the night before: wafer cut to size (or pre-fit if you use pre-cut), paste or ring seal, wipes, gauze, spray adhesive remover, and a fresh pouch. When you're half-awake at 6 AM dealing with a leak, you don't want to be hunting for supplies. Prep is everything.
Get the Seal Right — Every Single Time
Most leaks and skin problems trace back to a poor seal. The wafer opening should be no more than ⅛ inch larger than your stoma — any bigger and output touches your skin. Use a measuring guide every time for at least your first 6 months (stomas shrink as swelling decreases after surgery). Ostomy barrier rings or paste fill any gaps and dramatically reduce leaks.
Introduce Foods One at a Time
I can't stress this enough: don't experiment with multiple new foods on the same day. If something causes excess gas, odor, or runny output, you'll never know which food was the culprit. Add one new food every 2–3 days and note how your body responds. Your tolerance will expand over time — but patience in the first 6 months pays off long-term.
Manage Gas Before It Manages You
Gas is one of the biggest sources of anxiety in public situations — especially the noise. These foods are the biggest culprits for most ostomates: beans, broccoli, cauliflower, cabbage, onions, and carbonated drinks. Eating slowly and not using straws helps too. Deodorizing drops (like m9 or Devrom tablets) go a long way. You can also partially open your pouch in the bathroom to release gas quietly before it becomes a problem.
Hydration Is Non-Negotiable
If you have an ileostomy especially: you lose more fluid and electrolytes than you realize. Dehydration sneaks up quickly and feels awful. Aim for 8–10 cups of water daily and consider adding electrolyte powder to some of your drinks. The signs of dehydration — fatigue, headache, dark urine, dry mouth — are easy to dismiss. Don't. Your body will tell you when it needs more.
Dress for Confidence, Not Concealment
High-waisted underwear is a game-changer. It holds the pouch flat against your body and prevents it from swinging or pulling, which gets uncomfortable fast. Many ostomates also love wrap-style underwear or ostomy support belts for exercise or active days. Loose tops work, but you don't have to dress to hide your pouch — you get to dress to feel like yourself.
Pack for Success When You Travel
I bring double my supplies when I travel — always. Stuff happens: bags get delayed, supplies run low, or you get an unexpected leak. Keep your ostomy supplies in your carry-on, never in checked luggage. TSA is not a problem — they've seen it all. You can request a private screening if you'd rather. I also carry a small zip pouch with enough for one full change in my purse every single day, whether I'm traveling or not.
Yes, You Can Swim — and Exercise
I am living proof. Modern pouching systems are waterproof. Tape the edges of your wafer for extra security before getting in the water — some people use waterproof medical tape, others use ostomy-specific tape collars. Exercise is not just allowed, it's encouraged. Walking, yoga, swimming, cycling — most ostomates return to full activity within a few months of surgery. Protect against parastomal hernia by avoiding heavy lifting in the first 8 weeks and always lifting with your core engaged.
Find Your People
This one is the most important tip I can give you. The ostomy community is full of people who get it — not theoretically, but personally. Online groups, local support groups (ask your hospital's WOC nurse), and organizations like Beyond the Bag exist because connection heals something that no medical advice can. You don't have to carry this alone. The moment you hear another ostomate say "me too" — that is when your life changes.
You are not starting from scratch — you are starting from experience. Every single person who lives well with an ostomy started exactly where you are right now. The tips above work. Your community is here. And I promise you: it gets easier, and then it gets good.
— Stephanie Crawford, Ostomy Survivor & Founder, Beyond the Bag