Life After Ostomy Surgery: What No One Tells You

You had your ostomy surgery. Now what?

The hard part is supposed to be over. The procedure is done, you made it through the hospital stay, and you’re finally home. 

But as the days pass, you realize no one really prepared you for what life with an ostomy actually feels like.

You are not alone.

At South Shore Hospital, we work with ostomy patients every day, and we know that the challenges don’t end with the healing of your surgical site. 

In fact, for many people, that’s when the real journey begins.

The Emotional Curveball

Let’s be honest: many patients are unprepared for the emotional and psychological adjustments of life with an ostomy. 

You might grieve the change in your body, feel embarrassed about odor or leakage, or worry about intimacy. 

These feelings are completely normal. What matters most is not ignoring them.

Most patients feel a mix of relief and anxiety. They’re glad to be healing, but adjusting to a new way of living is deeply personal.

Support groups, like the Ostomy Support Group we host at South Shore Hospital, provide a space to talk about these feelings with others who get it.

Leaks, Odor, and Wardrobe Woes

If you’ve had a leak, you know how stressful it can be. 

Many new ostomates experiment with different pouching systems before finding the right fit for their body. And yes, products matter - there’s no one-size-fits-all solution.

Here are some quick tips:

• Odor control: Use deodorizing drops or pouches with charcoal gas filters.
• Clothing: High-waisted pants or ostomy wraps can keep your pouch secure and discreet.
• Leaks: Watch for skin irritation or changes in output volume. These can be signs of a poor seal.

The best source of real life hacks? Learning from the experiences of other ostomates, which is a key part of our support group.

Diet and Digestion (or Urine Output)

Depending on your ostomy type, your diet may need a few tweaks. 

For example, if you’ve had an ileostomy, you may need to chew food more thoroughly and stay extra hydrated. 

Colostomy patients often resume a relatively normal diet, while urostomy patients need to monitor urine acidity and fluid intake.

After your surgery, here are some diet-related things to keep in mind:

• Gas-producing foods (like beans, cabbage, or carbonated drinks) can quickly fill up your pouch. Make sure to check how full your pouch is frequently – especially if your ostomy is new.
• High-fiber skins (like apple peels) can cause blockages, especially with ileostomies.

There’s a learning curve, but eventually, eating will feel normal again.

You Can Still Travel (and Dance and Swim and Laugh)

One of the biggest fears ostomy patients have is losing freedom. 

Don’t let those fears slow you down: with preparation, ostomy patients can travel internationally, swim, hike, and dance with confidence.

A few traveler’s essentials:

• Always carry extra supplies in your carry-on.
• Pre-cut any wafers prior to flying (scissors are often not allowed in your carry-on and confiscated by TSA).
• Know where to find restrooms.
• Consider a travel letter for airport security.

In our support group, patients regularly share travel tips and confidence-building stories.

The Power of Community

What if you could talk to someone who’s been where you are? Someone who understands the fear, the fatigue, and the funny moments?

That’s exactly why we offer the Ostomy Support Group at South Shore Hospital: a space to connect, learn, and find strength in shared experiences. 

We meet every other month, and whether you’re weeks out from surgery or years into living with your ostomy, you are always welcome.

Remember: You are not alone, and this isn’t the end of your story. It’s the beginning of a new chapter.

Learn more about our Ostomy Support Group.

Cody Hedglin, MSN, RN, CWON is Program Manager for Wound and Ostomy at South Shore Health.

References

Colwell, J., Carmel, J., & and, Goldberg, M. (2015). Wound, Ostomy and Continence Nurses Society® Core Curriculum: Ostomy Management. Lippincott Williams & Wilkins.

Kittscha, J., Wilson, V., Fairbrother, G., & Bliokas, V. (2024). The role of peer support groups in adjustment to stoma: A qualitative study. Collegian, 31(3). https://doi.org/10.1016/j.colegn.2024.03.002

Marcomini, I., Villa, G., Poliani, A., Campoli, A., Magi, C. E., Vellone, E., Iovino, P., Rosa, D., & Manara, D. F. (2025). Exploring Social Support in Ostomy Patients: A Scoping Review. International Journal of Urological Nursing, 19(2). https://doi.org/10.1111/ijun.70005

Mohamed, N. E., Shah, Q. N., Kata, H. E., Sfakianos, J., & Given, B. (2021). Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies. Seminars in Oncology Nursing, 37(1), 151111. https://doi.org/10.1016/j.soncn.2020.151111