A Quick Guide to Urostomy Basics

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Have questions about a urostomy? Worried that getting one will change your life dramatically? Terrified of the idea of one and wondering what people will think?

By Robin Glover

Don’t worry. These are normal feelings. Nobody likes the idea of getting a urostomy – at first. However, if you talk to people who’ve had one a while, they’ll tell you how much it’s improved their lives, and likely saved it.

So feeling a little apprehensive (or a lot) is completely expected. But getting a urostomy should not hold you back from living the life you’ve always wanted. Will it change your life? Yes, but likely for the better compared to past bladder issues.

What Is A Urostomy?

A urostomy allows urine to leave the body without the need of a bladder. Also known as an ileal conduit, it is a surgically-created pathway that channels urine through the intestine to an opening on the abdomen. This opening, known as a stoma, is covered by an external pouching system that collects the liquid.

Why Do People Need A Urostomy?

People need a urostomy because their bladder has either been removed or doesn’t function properly. This is most often due to bladder cancer, but can also be the result of an injury or disease. In other cases, people are born with a non-functioning bladder and benefit from a urostomy their entire lives.

Is A Urostomy Gross?

No. Not at all. They do not cause an odor, and most people won’t even know if someone has one. Getting a urostomy is often a life-saving procedure that allows people to resume their everyday lives. Most people find it much easier and more sanitary to have a urostomy than deal with an incontinent bladder.

Will A Urostomy Affect My Daily Life?

There will be some adjustments after surgery, but most people who get a urostomy can usually do more things than they could before. You won’t need to worry about the embarrassment of having an accident in public or always needing to know where the nearest bathroom is. But most of all, you’ll be able to live a longer and healthier life.

Is A Urostomy The Same As A Colostomy?

While they share similar mechanisms in how they function, a urostomy helps people with bladder incontinence. A colostomy helps people with stool incontinence. Both use a pouching system to collect what comes out, and both are sanitary and safe without any odor when closed.  Urostomy pouches have a tap or valve to allow the urine to be drained quickly and easily. Overnight options are available for nighttime drainage convenience.

How Many People Have A Urostomy?

You are not alone. An estimated 725,000 to one million people in the United States have an ostomy or continent diversion. Colostomy and ileostomy surgery are the most common ostomy types but many thousands of people of all ages and backgrounds have a urostomy or urinary diversion. For a bit of inspiration read a few of their patient stories on our blog.

How Will A Urostomy Change My Diet?

You can eat whatever you want when you have a urostomy. Of course, this is barring specific restrictions from your doctor or other dietary limitations unrelated to having a urostomy. But, in general, there are no restrictions to what you can eat with a urostomy but information on the importance of hydration and other good health practices are covered in our ostomy nutrition guide.

What Is A Continent Urostomy?

A continent urostomy involves a surgically formed internal reservoir that allows control of when urine is released from the body. It usually involves a catheter that’s inserted into the stoma. Continent urostomies can also be routed through the urethra so urine is released from the body in a more typical fashion. Check out our Continent Urostomy Guide for more information.

Does A Urostomy Decrease Life Expectancy?

The answer is no. Urostomy surgery is a way to help people live longer and more fulfilled lives. So if you’ve been told you need a urostomy, as much as you might not think so right now, you’ll probably be glad you had it.

 

These are probably just a few questions you have about a urostomy. Luckily, there are people all over the world happy to help you. First of all, your Wound, Ostomy, and Continence (WOC) nurse is there to teach and help you. But practical advice and emotional support are always just a click away in online communities and by finding a UOAA Affiliated Support Group near you. Just remember that only your doctor and WOC nurse know the unique circumstances of your condition.

For more information on urostomies, please visit our Urostomy Facts Page.

 

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

 

 

Barrier considerations to obtain your fit

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What is more important: fit, flexibility, stretch capability, or adhesion?

If you cannot decide, or there are two or more that are just as important, you are not wrong. Why not have all in one for your barrier selection? You can have fit, flexibility, stretch capability, and adhesion in one pouching system!

Fit

When selecting a barrier, many considerations can come into play. When considering fit, proper application and sizing is important to help reduce leakage and create a seal around the stoma. Utilizing a stoma measuring guide or template with each pouch change is beneficial to help obtain the proper fit. Stoma size can change after surgery, so measuring is key.  Deciding between a precut or a cut-to-fit barrier is also important to consider, as it depends on which option provides the best fit to your body.

Flexibility

A flexible barrier will move, bend, and stretch with your body allowing you to be comfortable as you go about your daily activities. Flexibility with stability helps achieve a seal around the stoma along with the proper fit. In day-to-day movements like, getting in and out of your car, vacuuming, getting a spice off the top shelf, or even a sport you enjoy playing, flexibility is important to move with your body.

Stretch capability

Can you have flexibility without stretch capability and vice versa? What if these two worked hand in hand to create the best seal and optimal comfort to help you with your daily activities? Think back to reaching to get a spice off the top shelf in the kitchen. You need to have flexibility in the barrier to obtain the stretch, but then when back in a normal standing position the ability for the barrier to go back to the original shape after completing the stretch—how is that obtained? Teamwork!

Adhesion

Lastly the ability for the barrier to have adhesion to the skin. This can be a challenge outside of the barrier itself. For example, what if there is a small area of irritation, moisture, or the landscape is not perfectly flat (which is very common)? The adhesion is important to provide the tact to the skin so that the barrier has all the capabilities: fit, flexibility and stretch! Good adhesive security is obtained by gentle warmth using the body heat of your hands, and a nice gentle pressure with application from the inside (near the stoma) all the way to the edges of the barrier. This helps activate the adhesive into those small nooks and crannies that our skin has even if we can’t see them with the naked eye.

Essentially, there are many questions that may come up when deciding on the best barrier fit for you. Let’s go back to the original question that was posed: What is more important: fit, flexibility, stretch capability, or adhesion? The answer can be any of the above, and it all depends on your own lifestyle and personal needs. Things to keep in mind when you are considering your barrier options are, “Does this barrier have a good fit to my body?”, “Does the barrier allow me to stretch without compromising the seal?”, and lastly, “Does this barrier give me the security to enjoy my activities?”. There are options available for many body types and challenges. Reach out to your WOC nurse so they can help you answer the questions that are important to you!

 

Mackenzie Bauhs, CWOCN, is currently an employee and Ostomy Clinical Consultant for Coloplast. She obtained her bachelor’s degree at Carroll University in Wisconsin. She has worked with ostomy patients in the post-operative period at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin as well as outpatient ostomy care at Rush University Medical Center in Chicago, Illinois.

The materials and resources presented are intended to be an educational resource and presented for general information purposes only. They are not intended to constitute medical or business advice or in any way replace the independent medical judgment of a trained and licensed physician with respect to any patient needs or circumstances. The information presented or discussed may not be representative of all patient outcomes. Each person’s situation is unique, and risks, outcomes, experiences, and results may vary. Please see complete product instructions for use, including all product indications, contraindications, precautions, warnings, and adverse events.

 

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

 

 

Holiday Eating with an Ostomy

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By Robin Glover

Oh, the holidays! When cookies, cakes, and delicious pies suddenly appear everywhere, beckoning you to indulge in their sugary goodness. Don’t forget about those casseroles and their incredible aromas billowing from underneath a melted cheese topping. And those nuts — salty little kernels of flavor often found hiding among the decadently seasoned pretzels and cereal in everyone’s favorite snack mix.

The holidays are delicious, and food and drink are some of the many traditions friends and families have shared for generations. But, for people with an ostomy, eating and drinking around the holidays isn’t just a matter of likes and dislikes. Depending on the individual, certain things should be avoided while others can be enjoyed with no issues. The following is a guide to holiday eating (and drinking) with an ostomy.

It’s important to remember that these are general guidelines. Everyone is different, and each person experiences food differently. Consult with your physician or a registered dietician to know what’s best for you.

That being said, there’s no reason your ostomy, whether a colostomy, ileostomy, or urostomy, should hold you back from enjoying many, if not most, of your favorite holiday treats.

Maintain a Balanced Diet

Even during the holidays, maintaining a balanced diet is vital. No matter how good those sweets look, keep in mind that excess sugar and high-fat content can cause diarrhea, leading to the malabsorption of nutrients, leaving you feeling tired, irritable, and not in the holiday spirit. That doesn’t mean you need to deprive yourself, though. Just choose wisely.

For those with a urostomy, choosing non-citrus foods high in Vitamin C can lower the risk of infections. Examples of these include cranberries, broccoli, potatoes, strawberries, and leafy vegetables.

Chew Your Food Thoroughly

And while you’re at it, chews wisely too. For those with an ileostomy or short bowel, this is especially important. Both of these reduce the time your body has to digest the food you eat. Chewing your food a little extra can go a long way in helping your body get the nutrients it needs.

Eat Small Meals

Don’t forget to take breaks throughout the day to have a small meal or nutritious snack, even while you’re busy wrapping presents, decorating, and socializing. Eating several small meals is more beneficial than waiting to eat one large meal at the end of the day. An empty stomach can also be a source of gas.

Focus On Hydration

With all the hustle and bustle of the holidays, it’s easy to forget about the need to stay hydrated. That’s why it’s even more important to focus on good hydration during the holiday season. This includes drinking plenty of water while trying to limit drinks with added sugars, artificial colors or sweeteners, caffeine, or alcohol. Aim for 8-10 glasses of water a day.

Water alone won’t do it, though. Your body needs electrolytes, too. Sports drinks are a good source for this. However, you should dilute them with water to lower the sugar concentration. Electrolyte drops are also a good solution.

Low electrolyte levels can lead to many undesirable effects, including fatigue, irritability, and nausea. These symptoms only get worse the more dehydrated you get. So drink up!

If you have a urostomy, it’s crucial to drink plenty of water to avoid possible urinary tract infections (UTIs). And, since it’s recommended to consume plenty of Vitamin C, enjoy some holiday apple cider too!

Depending on the individual, certain things should be avoided while others can be enjoyed with no issues.

Ask About Ingredients

Things like casseroles, dips, cultural specialties, and cakes can often include ingredients you might not notice right away. During the holiday season, nuts can often be the biggest culprits and can cause discomfort or even a dangerous blockage for those with an ileostomy and to a lesser extend a colostomy. Other foods to be careful of are corn, if not fully ground in dishes like tamales, and dried fruits. Skip over foods, as tempting as they may be, that may include any of your trigger foods. Don’t worry; it’s ok to ask. Many people avoid certain foods for all kinds of reasons.

Know Your Safe Foods

 If you want to play it safe this holiday season, then stick to foods you know your body handles well. Consider keeping a food journal to help you keep track for next year. If you’ve recently had surgery for a colostomy or ileostomy, keep in mind these foods to avoid, but know that through trial and error you should soon feel more confident you’ll be able to enjoy most all of your holiday favorites.

 

Please read UOAA’s Eating With An Ostomy guide for more comprehensive information.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

Navigating Through the Covid-19 Pandemic with Medical PTSD and My Ostomy

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me+ Community member, Sarah Biggart, shares how she experienced feelings of Medical PTSD throughout the COVID-19 Pandemic with her ostomy. Sarah’s blog was written in November of 2020, but remains relevant as we continue to navigate through the Pandemic.

Last Thanksgiving, following a beautiful dinner and a house filled with family and friends, I had to take my Dad straight to the emergency room. After a decline in health, my dad passed in January. The last months of his life had been a slog through the fog; however, saying goodbye was peaceful and everything about his passing brought me peace. It was time. Just as I was emerging from this fog, a new storm was approaching. A virus, spreading globally and forcing bustling cities into lock down: COVID-19.

As a person with a complicated medical history, I was definitely paying attention, and started taking precautions very early to mitigate risk. As anyone who lives with a compromised immune system and chronic illness knows, when we get sick, it can have a way of snowballing.

I was always aware of Medical PTSD, and recognized it in myself. The trauma of long health battles, surgeries and hospitalizations made my fears of the virus very real. I felt more affected by that fear than ever. It can be triggering for me to even smell rubbing alcohol; so smelling the strong hand sanitizers creates a visceral reaction.

When I saw people receiving nasal swabs, it took me instantaneously to having NG Tubes inserted. I could feel it, and I averted my eyes. When I saw images of people laying intubated, I automatically could feel the sensation in my throat. I remember all of those sensations so vividly. They are a part of my trauma.

It’s honestly hard to lay down exactly what this past year has been like emotionally for me. On one hand I am filled with gratitude that I am able to stay safe at home. I work from home, my child participates in remote learning, and although my husband does still go outside the home to work, we have stayed safe and happy in our cozy home. We’ve tried to keep our family traditions and make new memories.

Unfortunately, this year has also been a very bleak reminder of how my health and quality of life hang in a very delicate balance. If I were to get the virus, I have major concerns about my ability to survive. Seeing my community’s complete disregard for the health and safety of those around them has also been disheartening.

I often think about my ostomy supplies. When it became hard to get essentials this Spring, the thought of not having access to the pouches and wafers that I need was especially daunting. What would my life be like if I was unable to pouch my stoma?

Doctors figured out how to create ostomies long before companies like ConvaTec were around to innovate. Hearing stories of ostomates before me who had life-saving ostomy surgery, but could not manage them in a sanitary way, weighs heavy. What would my life be like without my supplies? I think of the pioneering ostomates, using rags and mason jars, and other archaic methods. They were true survivors!

So here we are in November. Instead of a full Thanksgiving table, it will be just the three of us this year. While our country is facing an unprecedented public health crisis, my family will continue to stay safe, stay home and mask up. I wish nothing but peace, health and happiness for all of us.

The Pandemic Tree

Early on, to make things fun we pulled out our Christmas Tree, topped it with a roll of toilet paper and strung up some lights. We crafted ornaments and added them to commemorate milestones and events. It was silly and fun, and for us, all bets were off during quarantine. Our family mantra became healthy, happy and sane, we did what we could to get ourselves there. The Quarantree became a Halloween Tree, and now has transformed into a Fall tree. It continues to make our home feel cozy and festive and truly brings us joy.

 

 

 

 

 

 

 

 

Editor’s note: This article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Ostomates Take on Their Toughest Challenge… Kids

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People often wonder what to say to others, especially to children or grandchildren, when they first learn about an ostomy. While what kids ask can sometimes be surprising, their sincerity can brighten your day. Hollister Incorporated brought kids and ostomates together to learn about stomas for the first time. Hear what they had to say by watching this video –

About the Ostomates:

LeeAnne Hayden @leeannehayden

LeeAnne Hayden stepped away from a successful corporate sales career to build an online social selling business at age 40, and then was diagnosed with a rare form of cancer, which resulted in ostomy surgery. This would serve as her wake-up call to find ways to help herself and others overcome the stigma of living with an ostomy. Now, at age 50, LeeAnne has created a podcast called The Beautiful Bag. Read more about her story here.

Stephanie Bension @missbension

In 2004, when Stephanie was in high school, she was diagnosed with a combination of Crohn’s disease and ulcerative colitis. At 24 years old, she found herself in the emergency room faced with the reality of receiving an ileostomy. With time and support from her family, she started to share her story with others on social media. She is now a professional speaker who charms diverse audiences. She holds a degree in Radio-Television-Film from The University of Texas at Austin, which has allowed her to have unique experiences in several professional fields. You can learn more about her at www.stephaniebension.com.

Collin Jarvis @collinjarvis

Collin Jarvis was diagnosed with ulcerative colitis when he was a junior at the University of California, Berkeley. His body rejected drug treatment to the point where he lost 30 pounds and was sleeping 15 hours a day. Due to this, he underwent emergency ostomy surgery with the removal of his colon. Barely five years after his ostomy surgery, however, the news headlines screamed: “Collin Jarvis Runs Sub-2:30 in One of the Fastest Marathons Ever With an Ostomy.” As evidenced by his marathon-running success, Collin now has the wind at his back and a whole new purpose in life, including being vice president of Stealth Belt, an ostomy support belt manufacturer.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

We All Need Ostomy Friends

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Why You Should Join UOAA as an Official Member

By Alyssa Zeldenrust

(National Conference attendee since 2011, DuPage County Support Group (suburban Chicago), Co-Chair of Events for Young Adults)

UOAA friends, educational tools, and vendor fairs have been lifesavers for me, so I’d like to share a bit about why I’m a member and what UOAA has to offer.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for the 725,000 to 1 million of us Americans who are living with an ostomy or continent diversion (like a J-Pouch.) There is no need to feel alone, approximately 100,000 new life-saving ostomy surgeries are performed annually in the United States.

Without UOAA and medically diverse friends, I don’t know where I’d be today.

You can join one of the 300+ Affiliated Support Groups in the U.S. for local peer support and information. Whether you’re new or an ostomy veteran, you can get a lot out of UOAA resources.

I make sure every younger person I see at UOAA’s National Conference is welcomed into our group.

In my personal experience with my local support group, it’s a great way you can make friends who truly understand your situation. If you’re an ostomy veteran, you’re incredibly important to the new members of the group because you can guide them through difficult situations. Local ostomy friends are great because you can do social events in addition to support group meetings. I’ve gone to concerts, dinners, and parties with local buddies and it makes me feel so welcomed because nobody judges my body and we all tend to have a little bit of a dark sense of humor after a few years of illness or surgery.

Everyone should also become an official National Member, there is a membership for medical professionals as well. UOAA offers the National Membership for Individuals for an annual fee of $20.00. As an Individual Member you will receive UOAA’s:

  • National Membership pin and a stoma rose pin
  • Monthly e-Newsletter
  • New Ostomy Patient Guide
  • Plus, you’ll be notified when new or updated educational materials are available.
  • Have voting rights for our national elections
  • Can be nominated to be elected to serve on our Board of Directors
  • Will get a membership packet that includes a special promotion code to subscribe to The Phoenix magazine at a discounted rate.

Joining is also about standing up and being counted for advocacy purposes.

When I was too sick to attend the Run for Resilience Ostomy 5k my parents and fellow support group members made sure I was there in spirit with my face on masks.

Some local support groups host regional conferences that can be great. I had so much fun at the Midwest Regional Conference when I was lucky enough to go, and I left with a bunch of notes and new products to try.

National conferences are usually held every two years (Houston, Texas Aug 11-13, 2022 is next!) and are major events that turn me into a tornado of attempted hospitality. I make it my personal mission to find all the younger crowd and make sure nobody is left out and everyone has a chance to bond outside of the educational sessions. We have fun going all out with the parties and dancing up a storm. One of my favorite things has always been the vendor fair because you always find new things to try, and you can talk to people directly about their product. The educational sessions are so good that sometimes I truly have trouble choosing, so then we split up and take notes for each other.

A few people admitted to me later that they didn’t expect to leave with new, actual friends. That sort of thing just makes my heart happy. Without UOAA and medically diverse friends, I don’t know where I’d be today.

 

A version of this article first appeared on Allysa’s blog Partially Unstuffed

 

 

Celebrate World Ostomy Day at ConvaTec’s Virtual Patient Summit, Friday, October 1, 2021

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This event has passed but you can view it below. “This is My Life Now: A Patient Guide to Advocacy” By ConvaTec featuring UOAA Advocates.

Join ConvaTec for a live discussion with ostomates, nurses and other healthcare professionals at their two-session, one-day virtual summit on Friday, October 1, 2021.

“Ostomates’ Rights Are Human Rights – anytime and anywhere” is this year’s World Ostomy Day theme, which is why ConvaTec is bringing together ostomates, nurses and caregivers to lead open discussions that will be patient rights-focused fostering awareness, education, and advocacy.  Together we will have conversations that matter!

The Patient Summit will be broken into two sessions:

Session 1, 1pm EST: This Is My Life Now: A Patient’s Guide to Advocacy:

Joanna Burgess, BSN, RN, CWOCN. Is a WOC Nurse at Convatec and is Co-Chair of UOAA’s Advocacy Committee

Jeanine Gleba, MEd., UOAA Advocacy Manager

Ellyn Mantell is a UOAA Advocate, Author and Ostomy Support Group Leader.

Did you know that by knowing your patient rights and feeling empowered and exercising those rights – you can take those situations where you felt down and make it positive. Think, “This is MY life now. I have the right to be me.”

Learn about your local and international ostomy support resources, understand your patient rights, and feel empowered to exercise those rights in this session.

Scheduled panelists:

• Ellyn Mantell (United States), UOAA Advocate, Ostomy Support Group Leader

• Jeanine Gleba (United States), United Ostomy Associations of America, Advocacy Manager

• Joanna Burgess (United States), WOCN, ConvaTec me+™ Nurse, UOAA Advocacy Committee Co-Chair

 

Session 2, 3pm EST: Creating a Healthy Bond: Healthcare Support for Your Patients:

Allison Rosen is UOAA’s World Ostomy Day Champion, a colorectal cancer advocate and Ostomy Support Team Member at MD Anderson.

Healthy bonds in life are all around us. But there may be times it feels difficult to bond. Do you know, or do your patients know, about the resources available for support? Whether that is support with a nutritionist so they can learn about fiber intake, or with an exercise therapist to get guidance on hernia prevention. It could even be the support a therapist can provide navigating new emotions in your personal relationships. There are healthy bonds that can be built between an ostomate and their healthcare professionals.

Create a strong bond with your patients and healthcare providers. Get to know the different types of pre and post-operative support available.

Scheduled panelists:

• Lorena Eltz (Brazil), Patient Advocate

• Lorraine Grover (United Kingdom), Psychosexual Nurse Specialist

• Allison Rosen (United States), United Ostomy Associations of America- World Ostomy Day Champion

 

Editor’s note: This blog is from ConvaTec, Platinum Sponsor of the 2021 Run for Resilience Ostomy 5k. This event raises ostomy awareness and helps fund the services and programs of UOAA, a 501(c)(3) nonprofit organization.

 

Bringing People Together Around the Globe for Ostomy Awareness

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Hollister is proud to support World Ostomy Day! In partnership with United Ostomy Associations of America (UOAA), Hollister Incorporated is proud to stand with the entire ostomy community in celebration. Here are some ways you can learn something new, show your support, or connect with others in the global ostomy community.

Tune in to a Virtual Panel Discussion

 

 

 

 

 

 

 

Hollister has joined up with their sister brand based in Europe, Dansac, to bring you a virtual panel conversation with ostomates from around the world about their experiences and how they engage with the ostomy community. Tune in for a great conversation! Sign up for a reminder, and to submit a question for the Q&A.

Order Your Stoma Sticker

Stoma stickers are a great way to raise awareness, start a conversation, or show support. Order your free Stoma Stickers in time for World Ostomy Day, shipped anywhere in the US.

Share a photo or video of your Stoma Sticker on social media using #StomaSticker to be part of the conversation. Or show off your Stoma sticker while running the virtual Run for Resilience Ostomy 5K and share how you celebrated #WOD2021.

Share your #OstomateVoices and personalize your next Instagram or Facebook Stories with Hollister digital stickers. Search for them in the GIF library when creating an Instagram or Facebook Story and you’ll find a whole new collection.

Start Listening to #MyOstomy Podcast

 

 

 

 

 

 

 

 

Join Eve, Chris, Kelly, Ed, Gill, and Alice as they describe their challenges and breakthroughs with illness, symptom management, mental well-being, pregnancy, workplace conversations, and more in this limited run series. Each conversation helps to shine a light on the lived experience of illness, the positive impact stoma surgery can have, and the power of every person living with a stoma. Learn more

For more resources and interactive ways to get involved, visit Hollister.com/worldostomyday.

 

Editor’s note: This article is from Hollister Incorporated, Diamond Sponsor of the 2021 Run for Resilience Ostomy 5k. This event raises ostomy awareness and helps fund the services and programs of UOAA, a 501(c)(3) nonprofit organization.

Physical Rehabilitation After Surgery

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Have you ever wondered what you should be doing to fill your time as you recover from ostomy surgery?

After my first surgery at the age of 17, and even after my third surgery at the age of 23, I spent most of my time lounging around my parents’ house, waiting for the day that I would be cleared by my surgeon to return to “normal” activity. My parents would coax me out of the house to go on one walk a day, but I spent almost all of my time watching television and YouTube videos and sleeping.

Fast forward to age 30. At age 30, I ended up having my sixth major abdominal surgery. And by this point in time, I had been working as an Occupational Therapist (OT) in a hospital setting for six years. For six years, I had been helping other individuals recover and rehabilitate from major illness and injury. I had also spent years recreating in the mountains and enjoying a highly active lifestyle. So when I found out that I needed a stoma revision, I knew that my recovery would look very different from my previous surgeries. I knew that in order to improve my recovery time, decrease my risk for complications, and get back to the mountains, I had to put in more work.

For those who are less familiar with the rehabilitation professions, “Occupational Therapists enable people of all ages to live life to its fullest by helping them promote health, and prevent – or live better with – injury, illness, or disability” [1] and “Physical therapists [PTs] are movement experts who improve quality of life through prescribed exercise, hands-on care, and patient education” [2]. Although I’m an OT, seeking out my own rehab professional to work with was the best thing I could have done.

I already knew a lot of the basics of how to rehab myself, but having someone else who I would be accountable to and who I could bounce ideas off of was a bonus. I knew from my training as an OT that one 30-min therapy session prior to abdominal surgery, reduces the risk of complications by 50% [3]. So the first thing I did was set up an appointment with a pelvic health therapist prior to my surgery. I was able to find a local pelvic health PT to work with, although, both OTs and PTs may specialize in pelvic health. I sought out a pelvic health therapist because of her specialty training in digestive and urinary systems and the interaction between the abdomen and pelvic floor. In my time working as an OT, and in my time spent working with many PTs, I’ve learned that there are fundamental areas that ostomates should be targeting after surgery to improve their outcomes. Working with a therapist in the following areas can be quite beneficial:

Therapeutic Breathwork. Breath is necessary for life. If you aren’t breathing properly, you certainly won’t be getting back up on your feet and recovering from surgery any time soon. Breathing properly can also help decrease the pressure in your abdomen (i.e. intra-abdominal pressure) which decreases your risk for parastomal hernia and other complications.

Mobility Training. Focusing on walking in a strategic manner following surgery can also set you up for success in the long run. Not only is walking good for building up your endurance again, but it is a great way to begin engaging your core in a gentle manner.

Core Recovery. After surgery, your abdomen can be very tender. But it’s important to begin exercising in order to coordinate your abdominal muscles again and gain strength so that you will be less likely to injure yourself in the future.

Functional Daily Activities. Finally, as you go about your day-to-day routine, some tasks will feel more difficult than they used to. For example, bending to put on your socks can be painful and can pull at your incision. Working with a therapist on strategies to increase your independence and return to the daily activities you enjoy is invaluable.

I’m lucky that I decided to become an Occupational Therapist. It has enabled me to empower myself with knowledge about the human body and recovery from surgery. But you don’t have to be a therapist to have a positive recovery experience and lead a fulfilling life. If you’re feeling stuck, seek out a rehabilitation professional. You deserve quality care and support to feel confident and strong after surgery.

Wishing you well on your ostomy journey,

Charlotte

As you start your journey to recovery, you’ll experience that life after ostomy surgery is a new reality. No matter how far after surgery you are, you will need to adapt to your condition and cope with your new situation. If you’re looking for additional support during your ostomy journey, consider enrolling in Coloplast’s free online support program, Coloplast® Care! It is a personal product support program designed in collaboration with nurses to provide you with individualized product support and lifestyle education, and product access coordination. Coloplast Care is available when you need it – whether it is through our online educational resources offering reliable product and lifestyle advice, news and tips customized for your situation, or over the phone with our team of dedicated Ostomy Advisors. We’re here to help!

Visit us at www.ostomy.coloplastcare.us or call 1-877-858-2656.

Information from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations.

About the author:

Charlotte Foley, MS OTR/L, CBIS, received her Occupational Therapy degree at Boston University and began her career in the adult Inpatient Rehabilitation setting. She now works in the adult Acute Care setting at Providence Alaska Medical Center in Anchorage, Alaska. Because of her own personal and professional experience, Charlotte founded and runs her own education and consulting business, Restorative Ostomy Solutions, to empower individuals to feel strong and confident as they recover from ostomy surgery.

Charlotte has received compensation from Coloplast to provide this information.

Editor’s note: This article is from one of our digital sponsors, Coloplast. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

 

References

[1] AOTA (2021). What is Occupational Therapy? Retrieved from

https://www.aota.org/conference-events/otmonth/what-is-ot.aspx.

[2] APTA (2021). What Physical Therapists do? Retrieved from

https://www.apta.org/your-career/careers-in-physical-therapy/becoming-a-pt.

[3] Boden, I., Skinner, E., Browning, L., Reeve, J., Anderson, L., Hill, C., Robertson, I., Story,

D., & Denehy, L. (2018). Preoperative physiotherapy for the prevention of respiratory complications after upper abdominal surgery: pragmatic, double blinded, multicentre randomised controlled trial. British Medical Journal, 360:j5916. http://dx.doi.org/10.1136/bmj.j5916

Support is Crucial

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Written by: Brenda Elsagher, Director of Affiliated Support Group (ASG) Affairs, United Ostomy Association of America

Support. I’m not talking about my bra, although it could win an Oscar for a supporting role! I’m talking about the kind of encouragement you get from knowing another person with an ostomy.

I freaked out when I was 39 and had to have a colostomy. I wanted a point of reference and needed to talk to someone who had a stoma. I wanted to know what to expect; I wanted to prepare my body and mind for the changes coming my way. There was no internet and no social media. I didn’t even know there was any other kind of ostomy besides a colostomy.

My Wound, Ostomy, and Continence Nurse (WOCN) was a great source of comfort. She calmly explained, without horror, that excrement (OK, I think she actually said “stool” – and I wouldn’t have used either of those words) would be coming out of my abdomen and into a bag that would somehow adhere to my body.

She made it sound like it would become so natural, as if I was adding a quart of milk to my shopping list. No big deal. You’ll get this in no time at all. And she said all of this with a confident smile – a genuine one, not a fake one like when people are trying to help you through something awful. I felt she meant it! So, I let myself believe her.

During one of my subsequent visits to her office, I saw a newsletter that listed a meeting time for people living with ostomies. I went to the meeting, and realized that this was my tribe. For many attendees, these gatherings were the only ostomy support they had, other than their loved ones who tried to understand but could never quite get it. Besides, here were people I could eat a meal with while talking about changing ostomy pouches. You can’t do that with every crowd! I met life-long friends at those meetings, and that was an unexpected perk.

Then I heard of a conference, the United Ostomy Associations of America (UOAA) national conference, where people came from all over the USA, and some from Canada and other countries too. It featured classes, social events, great speakers, and time to get to know more people with ostomies. A young man I talked to recently told me that he met someone at the 2009 conference who changed his life and made all the difference. If we only knew the power of a quiet conversation and how its impact can be phenomenal. We can be a resource for one another. That’s why I suggest regular telephone check-ins or video calls with UOAA Affiliated Support Groups (ASGs), because both can play a crucial role in helping someone feel connected.

I also found information galore and updates on the latest innovative technology for people with ostomies in The Phoenix magazine (the official publication of the UOAA), which still exists today. Not long after, I got America Online (AOL) and felt like I was on the forefront of technology. I had a computer, and now the internet. Imagine horns blasting – my world opened up and the exchange of information worldwide was awesome. Even more ways to communicate! A woman in Colorado who read my book, “If the Battle is Over, Why am I Still In Uniform,” emailed me, decided to get a colonoscopy, and was spared from cancer. That is a satisfying feeling, to know you gave up a year of your life to write a book and it saved another.

I began to speak across the USA. Who would have thought that 25 years later I am still talking about bowels and butts, or dare I say the lack of them in some cases? The people I have met, the conversations I have had, the opportunities that have come my way – all because I chose to meet with a small group of people. That experience led to an abundance of support, not only for me but for others I know with ostomies or continent diversions, because of all that we shared. Some shared their misery, some shared their success, and some listened, learned, and began to feel that they could deal with their situations. Finding the group was life enhancing, and even life-saving in many cases. I kept coming to help others, but have been helped in return many times over. A phrase that I often heard at the meetings was, “Someone reached out to me in the hospital, and I want to do the same.”

In my new role as the UOAA Director of ASG Affairs, I have come full circle as a volunteer. I meet so many people across the USA that are actively reaching out to others, and helping them on their paths to recovery of mind, body, and spirit. I am their cheerleader. Sometimes I can offer a suggestion or teach them how to use Zoom to stay connected. I have always known that the UOAA had our backs but I have now found so many more resources on their website that I never knew existed. There are over 300 ostomy support groups in the USA for people with ostomies and continent diversions. And for people who don’t like to go to group meetings, there is an individual membership too that gives them full access to an abundance of resources.

There is no right way or wrong way to have an ostomy. You don’t have to shout it out to the world, but there also is no reason to be ashamed about it. I honor your privacy, and thank you for honoring my desire to be public. Both are good. We are alive and grateful!

 

This article originated in the Hollister Secure Start services eNewsletter. For more ostomy resources at your fingertips, subscribe here.

Brenda Elsagher is an author, international speaker, and comedian, and also volunteers with the UOAA. She has been living well with an ostomy for 25 years. Find out more about Brenda at www.livingandlaughing.com, and follow her on Facebook @BrendaElsagher. 

Financial Disclosure: Brenda Elsagher received compensation from Hollister Incorporated for her contribution to this article.

 

Editor’s note: This article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.