We worked with Tayler Goectau, an ostomate and chronic illness advocate, to compile this guide for living with an ostomy bag. She uses her social media presence to educate and empower others on their journey with chronic illness and disability. For more resources, check out @distaaybled on Instagram.
Life with an ostomy can look different for everyone. For some, getting an ostomy was daunting and overwhelming, while for others, it was one of the best things they’ve done for their physical and mental health. Although there are plenty of resources filled with medical jargon and care instructions, there remains a gap in accessible and digestible information for those dealing with the day-to-day challenges of an ostomy. As Tayler put it:
“Normal people have ostomies, and we need real-world advice.”
How to Prepare for Ostomy Surgery
There are plenty of reasons why someone might need ostomy surgery, and unfortunately, not everyone is given the chance to prepare. If you have time to prepare, Tayler has a few tips from undergoing her ileostomy:
- Meet with an ostomy nurse to choose where your stoma will go. If this isn’t offered, you can request to meet with your surgeon instead.
- Bring your favorite pair of pants to try on during your consultation to make sure your proposed stoma site won’t interfere with them.
- Order sample bags to try on before the surgery to mentally prepare for what it will be like (see resources below).
- Prepare your space at home with things you might need, like a shower chair.
- Meal prep and freeze ostomy-friendly meals to eat post-surgery.
- If you can, do gentle core-strengthening exercises and pelvic floor therapy to prevent hernias.
- Focus on a high-protein diet to support recovery after surgery.
Types of Ostomies & How They Work
Your experience with an ostomy depends on its type and the reason for the procedure. The key difference among colostomies, ileostomies, and urostomies lies in which part of the body is diverted to the outside through the stoma.
Ileostomy
An ileostomy uses a part of the small intestine (ileum), usually on the right side of the abdomen, to create the stoma. An ileostomy bypasses the large intestine entirely. An important function of the large intestine is absorbing water from the food it digests, meaning that those with ileostomies have more liquid output in their stool than normal.
Why are ileostomies performed?
- A non-functional colon or rectum
- Inflammatory bowel disease, like Crohn’s disease or ulcerative colitis
- Colon or rectal cancer
- Intestinal birth defects
- Intestinal damage
- Familial polyposis, or hereditary growths on the colon and rectum that often lead to colon or rectal cancer
Colostomy
A colostomy involves bringing a portion of the large intestine (colon) to the abdominal surface, typically on the left side, allowing digested food to pass into an external pouch.
Why are colostomies performed?
- Abdominal infections
- Colon or rectum injuries
- Rectal or colon cancer
- Fistulas (abnormal tissue connecting two bodily structures) or wounds in the area between the anus and vulva or scrotum
Urostomy
A urostomy uses a segment of the intestine to divert the ureters (the tubes carrying urine from the kidneys) to the abdominal surface, creating a stoma for urine to exit the body when the bladder doesn’t function or has been removed.
Why are urostomies performed?
- Bladder cancer
- Spinal cord injuries
- Chronic bladder infections leading to malfunction
- Birth defects
Ostomy Reversals
There are a number of circumstances in which ostomy reversals are appropriate, but many ostomates will live with their stoma permanently. Depending on your situation, however, this isn’t necessarily a bad thing. For many ostomates, their ostomy bag greatly improves their quality of life, leaving reversal out of the question.
Tayler noted that medical professionals often ask when she plans to reverse her ostomy, despite her drastic improvement in quality of life since the procedure. In her experience, these interactions emphasize the stigma surrounding ostomies and highlight the need to challenge these misconceptions.
Ostomy reversals are possible when stomas are meant to be temporary, but in some cases, a temporary stoma becomes permanent. Temporary stomas are commonly done for conditions that might resolve, such as:
- Infection
- Diverticulitis, or inflammation of the small pouches on the lower large intestine
- Colorectal cancers
- Inflammatory bowel disease
Different Stoma Types: Loop vs. End
Ileostomies and colostomies can be created as either loop stomas or end stomas. Generally, loop stomas are easier to reverse, while end stomas are often permanent or require more complex surgery for reversal.
Loop Colostomy vs. End Colostomy
A loop colostomy is made by pulling a loop of the colon to the surface and cutting it open, creating two openings—one for stool and another leading to the rest of the digestive tract. This type is typically temporary and used in cases where the bowel needs time to heal, like after surgery or trauma. Since both openings are part of the same loop, a future reversal is simpler.
An end colostomy, on the other hand, involves bringing one end of the colon to the surface as a single stoma while the remaining bowel is either removed or closed off inside the body. End colostomies are more commonly permanent and are performed for conditions that won’t improve. Since the colon is detached from itself entirely, reversing an end colostomy requires more extensive surgery than reversing a loop colostomy.
Loop Ileostomy vs. End Ileostomy
A loop ileostomy is created by pulling a loop of the small intestine to the abdominal surface and making an incision to form two openings. This type of ileostomy is usually temporary and allows surgeons to reconnect the bowel later without major reconstruction. It is often used in cases of Crohn’s disease, ulcerative colitis, or other conditions requiring temporary diversion of the intestines.
An end ileostomy, in contrast, involves bringing the end of the small intestine to the surface as a single opening. This is typically a more permanent solution, used when the colon is removed or no longer functional. While some end ileostomies can be reversed, the process is more complex than with a loop ileostomy.
Living with an Ostomy: Care Basics
Choosing and Changing Your Ostomy Bag
Finding the right fit: You may not get it perfect the first time, but thankfully, many brands offer free ostomy samples. Tayler explained:
“What they give you in the hospital isn’t always the best for you. I ended up switching brands for better comfort and durability."
Mixing and matching brands: Many patients aren’t aware that they can mix and match brands for a better fit. For example, for Tayler, the part that sticks to her (the skin barrier) and the bag is one brand, but the barrier ring that goes under the adhesive is another brand.
Essential Ostomy Supplies & How to Choose
Ostomy Bags and Customization
Ostomy bags come in various styles, including one-piece and two-piece systems. While “ostomy bag” is a general term, you may also hear “colostomy bag,” “ileostomy bag,” or “urostomy bag,” depending on the type of ostomy. Regardless of your ostomy type, you have the flexibility to choose the bag that suits your lifestyle, including options with different sizes, filter systems, and drainable or closed-end designs. Some find that using an ostomy belt—a supportive band that secures the bag—can add stability and confidence during daily activities as well.
Ostomy Bag Covers
Many ostomy users also use personalized ostomy bag covers, which can provide discretion and help people feel more comfortable. Tayler started making her own ostomy bag covers because she wanted a sleeker option, not bogged down with elastic and bulky materials. Instead of buying new fabrics, she uses thrifted fabrics to give them a new life–the same way her ostomy bag did for her.
“A lot of people say that their ostomy gave them a second chance at a quality of life, or even that it saved their life. By repurposing these fabrics, it’s kind of like giving the fabric a second chance at life, too–something new.”
Ostomy Wafers and Skin Protection
The ostomy wafer (also called a skin barrier) is the adhesive component that secures the bag to your abdomen. Wafers come in different styles, including convex wafers, for example, which are designed to provide extra support for people with flat or retracted stomas by creating a more secure seal. Finding the right wafer type is crucial to preventing leaks and ensuring skin health.
To further protect the skin and improve adherence, many people use ostomy paste and ostomy barrier rings. Ostomy paste is not an adhesive; rather, it fills in gaps around the stoma to prevent leaks and create a smoother surface for the wafer. Ostomy barrier rings serve a similar purpose but are moldable, providing a flexible seal that enhances comfort and security.
Daily Ostomy Care & Hygiene Tips
Preventing Leaks and Skin Irritation
When cleaning around your stoma, wash your hands first and make sure you're using a clean washcloth or unscented tissues. Avoid using anything with chemical irritants around your stoma–that includes soaps, lotions, oils, and anything scented. Soap can also break down the adhesive barrier and lead to leaks. To deal with irritated skin, Tayler uses a ‘crusting’ technique which uses ostomy powder first, then adhesive spray to create a protective barrier, allowing the skin to heal properly. To see her demonstrate how she does this, take a look at her Instagram post on crusting.
Finding Your Routine
Tayler emphasized that although it may take some time, settling into a routine that works for you is key to adjusting to life with an ostomy. For example, Tayler only changes her ostomy bag in the morning after not eating all night, so she has less output and it’s less messy trying to change it. After a few months, she started to understand how much time it takes for bowel movements to occur after eating, which helps her plan for times when changing her ostomy bag will be inconvenient.
Hydration and Nutrition
The digestive tract–particularly the colon or large intestine–plays a crucial role in absorbing water from the food you eat and completing the final breakdown of food before it turns into stool. Since ileostomies and colostomies bypass key parts of the digestive tract, they increase the risk of dehydration, blockages from fibrous foods, and complications from gas-producing or stool-loosening foods. While everyone’s experience is different, some common food sensitivities include:
- Fibrous vegetables like mushrooms, celery, corn, popcorn, etc.
- Gas-producing substances like beer, carbonated beverages, broccoli, brussels sprouts, etc.
- Odor-producing foods like asparagus, cabbage, eggs, fatty foods, etc.
- Foods that can cause loose stools, like apple and prune juices, baked beans, chocolate, fresh or raw fruits/vegetables, etc.
When & How to Disclose Your Ostomy
After getting an ostomy, how you disclose information about your surgery is completely in your hands. Some people choose to be open about it, while others prefer to keep it private.
There are certain situations where sharing is necessary, like in medical settings or when explaining accessibility needs. However, in social or professional environments, disclosure is a personal choice.
As an advocate for ostomates on social media, Tayler approaches her ostomy with open-mindedness and transparency. She urges others to do the same, although it’s not always easy:
“I get comments like, ‘No one wants to see that,’ but I remind people that they don’t have to look. If sharing my experience helps someone else feel less alone, then it’s worth it.”
By talking about her ostomy so openly, her aim is to make other ostomates feel seen, respected, and ultimately, normal. Of course, not everyone who comes across her page has their own ostomy, nor are they familiar with one. By explaining her experience and answering questions that some may perceive as obvious or taboo, she’s working to destigmatize the subject while providing digestible resources.
That’s not to say you have to share that you have an ostomy bag with those around you–whether you decide to be open or private, there’s no right or wrong way.
Finding Support & Resources for Ostomates
For many ostomates, finding practical resources and support isn’t always easy. While medical guides exist, Tayler found that social media provided the most relatable insights into life with an ostomy. It connects people who may struggle to leave the house, offering a space to share fears, experiences, and advice.
Tayler’s social media presence helps those who have felt unheard, providing the content she wished she had during her own journey. For in-person support, ostomy nurses offer essential guidance on post-surgery care, troubleshooting issues, and selecting supplies. Many hospitals and clinics also host ostomy support groups, fostering community and shared understanding.
The Bottom Line
Living with an ostomy bag comes with challenges, but it also offers newfound freedom for many. The journey is deeply personal—some struggle with the transition, while others embrace it as a life-changing improvement. What remains constant is the need for accessible, real-world advice, free from medical jargon, to help ostomates navigate daily life with confidence.
From finding the right supplies and routines to building a support system, learning to live with an ostomy is about trial, error, and adaptation. With resources like social media communities, medical professionals, and advocacy groups, no one has to go through it alone. As Tayler reminds us, ostomies shouldn’t be seen as limiting but rather as tools that enable a better quality of life.
