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How to Deal with Peristomal Hernias

By Elaine O’Rourke, Ostomy/IBD Health Mentor

Peristomal hernias are something that every ostomate should be aware of. Although a hernia can occur for a wide variety of reasons, there are some common factors to take into consideration, such as weight, age, level of fitness and other health issues.

Nurse Anita Prinz, CWOCN, is my guest in this must-watch video and we discuss hernias in detail. She shares a very informative slide show as well as showing different types of hernia belts and ostomy products that are useful if you have a hernia.

You will see and learn what hernias look like, how they form and preventive tips.

There are a great variety of hernia support belts on the market which can make a big difference. But you should be fitted/sized for your hernia belt as every body and stoma is different.

It is so important in the weeks following surgery not to lift or do anything strenuous. Even coughing can cause a hernia. Always proceed with caution especially when you are starting to exercise. If you are trying to get in shape and have not been active before surgery then you are advised to wear a hernia belt.

You might benefit from one-on-one instruction from someone such as myself who is trained and knows how to exercise safely and strengthen and engage the core with an ostomy. Hernias do not go away so you should consult your medical professionals to get more advice. Surgery can be done but be aware that hernias can reoccur.  Ask questions and be well informed.

Make sure to grab your FREE GUIDE: “3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com

Nurse Anita is available for a private consultation. www.AnitaNurse.com

About Elaine

Elaine O’Rourke is an Ostomy/IBD Health Mentor and the creator of the program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”.  She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others.  She is a contributing writer to the national Phoenix Magazine and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat. 

YouTube: Elaine O’Rourke Yoga, Ostomy, IBD

Facebook: https://www.facebook.com/ostomyibdlife/

Instagram: https://www.instagram.com/ostomyibdlife/

Web: ElaineOrourke.com

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Moisture Math & My Ileostomy

By Sarah Biggart

ostomy pool side

Though having ileostomy surgery 15 years ago gave me my life and freedom back, it does bring its own unique set of concerns and challenges in daily activities and pouch changing schedule. I typically change my full appliance every fifth day.

Change day is day one, and I change my entire pouching system again on day five. I feel confident in my appliance, and this changing system has worked really well for me. Leaks are few and far between; however, as is true for most ostomates, they do happen occasionally. Leaks can happen to all of us, although my longest stretch without a leak is five years – not too shabby!

For me, my daily routine includes showering, exercising, getting sweaty – and weather permitting – swimming and jacuzziing in our community pool with my friends, family and neighbors. Even while doing all of these regularly, a five day wear time holds up for me.

So now, let’s talk what I like to call “Moisture Math”, and the moisture related variables that may affect my wear time.

Travel & Convenience:
If I am going away for the weekend, or traveling, I will do a full pouch change the night before I leave. I have always been a “better safe than sorry” girl, and being an ostomate has reinforced that mindset. If I can get away with not having to do a full pouch change in an unfamiliar setting, I will, just for my own ease and comfort. I’ve been held up traveling before, and it can feel stressful and uncertain. When you’ve had to sleep in an airport, just the added comfort of knowing I have a few days before needing to do a full change is just one less thing to be concerned about. So when setting off on a journey, I like to start with a freshly changed system.

Weather:
I live in a very mild climate, not too much heat and humidity at any given time. My Ostomysecrets® Underwear keeps my pouch away from my body, and it helps limit complaints about excessive heat and moisture. I am a person who enjoys travel and adventures! Sometimes I wind up in warmer, muggier parts of the world. On those sweaty days, walking and exploring in the heat, moisture math joins the pouching equation. A couple of summers ago my family, friends and I spent 10 days in Florida, in July. Between walking an average of 10 miles each day enjoying Walt Disney World, swimming in the pools, afternoon downpours daily and being a general sweaty mess, I went to a very strict every other day change. It was more moisture than I typically deal with, and going back to my better safe than sorry mentality, it seemed like my best course of action. My sting free ostomy care products helped to make frequent pouch changes more gentle on my peristomal skin. I would do my changes at night in our room, in the air conditioning, so that my wafer had plenty of time to adhere to my skin before heading back into the sweltering Florida heat.

Daily Activity:
We all find our own way of managing our changing schedule, most Ostomy Nurses (WOC nurses) would recommend 3‐5 days of wear time. What I would definitely advise against is waiting until you HAVE to change due to a leak. Before you realize you have a problem, waste is coming into contact with your peristomal skin, and that may lead to skin damage. Above all, you want to keep your skin healthy, happy and intact. So when would my daily activity impact my wear time? Again it’s moisture math! I mentioned earlier that I like to swim and jacuzzi; a quick dip for an hour or so is very different than a big day out that involves being in a wet bathing suit all day. If I am planning a big day out on the water, in the pool, at a beach or waterpark, I figure that in to my changing schedule. For example if day one was Thursday, and day three is a big day out involving water, when I get home, I’ll typically shower and do a full change.

I’m always mitigating risk, and making smart, informed decisions regarding my ostomy. Adjusting my routine accordingly to moisture variables helps to keep my peristomal skin healthy allowing me to enjoy whatever life brings my way. Whether you are new to the ostomy world, or a seasoned pro like myself, planning ahead – just a little – may help you to experience life to the fullest.

More information from ConvaTec

Editor’s note: This educational 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.

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Charlotte’s Ostomy Story

 

Outdoor Adventure Does Not Stop with an Ostomy and IBD.

Hi my name’s Charlotte!

I grew up in New Hampshire as the youngest of three sisters. I had a pretty normal childhood and was raised by a wonderfully supportive family who fostered in me a sense of independence and love of adventure. In 2007, at the age of 17, I was diagnosed with ulcerative colitis. That diagnosis later changed to Crohn’s disease, and it changed my life forever.

My IBD progressed rather quickly and about nine months after my original diagnosis, I had my colon removed, a temporary ostomy, and a j-pouch created. I lived with my j-pouch for five years, and those were some of the toughest years of my life. Despite a failing jpouch, pooping my pants every day, and a variety of other debilitating symptoms, I was determined to continue living my life. I was able to graduate from high school, bike across the country while in college, and complete my academic coursework as an Occupational Therapy student on time (despite dropping out of college in my Sophomore year because of my Crohn’s disease). I was not going to let Crohn’s get in my way.

In 2013 after agonizing over the thought of ostomy surgery (I had been adamant for years that I would not have an ostomy), I finally told my surgeon I was ready, and underwent surgery for a permanent ileostomy. I felt prepared for ostomy surgery this time around because I went to local support groups in Boston to learn more about living life with an ostomy. I also found a surgeon who understood me and what I wanted out of life. My ostomy changed my life again, and this time for the better. I’ve had 3 stoma revisions and my Crohn’s does pop up every now and then, but I have so much more freedom in my life with my ostomy.

In 2014, after graduating with my Master’s in Occupational Therapy, I was able to move to Alaska to take my life back and pursue a life of outdoor adventure (and work). I started sharing more about my ostomy with my community which increased my confidence. I worked to establish a collaborative medical team, including my surgeon, GI doc, and physical therapist/pelvic floor therapist who have helped me take control over my life and continue an active lifestyle. I’m a passionate OT working in Anchorage. I enjoy running, biking, skiing, climbing, hiking, backpacking, camping, and spending any time outdoors. My family, boyfriend, and friends are my greatest sources of support, and they inspire me to live my life fully.

In addition to my passion for the outdoors and exercise, I enjoy empowering others to learn more about themselves and how to thrive with an ostomy. When I first had my ostomy, there weren’t many resources out there, but I stumbled upon the Ostomy Outdoors blog which provided helpful resources for my outdoor journey with my ostomy. That’s in part why I created my blog, backcountryostomy.com, to support other ostomates returning to active lifestyles after ostomy surgery.  And I recently started my business, Restorative Ostomy Solutions to empower Occupational and Physical Therapists to feel more confident working with ostomy patients.

Through rehabing myself from six major abdominal surgeries, I have learned what it takes to pick myself up after each setback and continue on my life journey. Because life if so much more than my diagnosis and my ostomy!

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Tips for Coping in a Crisis

Two ostomy community leaders discuss effective ways to stay positive when times get tough.

Living through a crisis is hard for anyone, but there is an extra layer of concern for people with ostomies. Hollister sat down with two influential people in the ostomy community to find out how they cope during challenging times.

Amber Wallace is the creator of the Ostomy Diaries YouTube channel and social media platforms, and Dr. Paul Wischmeyer, MD is a critical care, perioperative, and nutrition physician at Duke University School of Medicine in Durham, North Carolina. Both Amber and Paul live with an ostomy.

Q: How can people with ostomies stay healthy both physically and emotionally when facing a crisis?

Amber: The best way to take care of your emotional health is to take care of your physical health. Continue to take your supplements. Stick to a schedule and make checklists. During a difficult time, I do the same things at the same time every day and that helps. It’s also important to get enough rest and exercise, even if you have to find a routine online. Grief and anxiety can manifest physically if you don’t put those things into practice.

Paul: I agree with taking the proper supplements. Some of us with ostomies absorb vitamins differently, so it’s important to consult your doctor before starting a regimen. Exercise is also very important. As a senior in college, I was doing research with a doctor at Mayo Clinic. One day he said, “Paul, you’re getting soft and look a little out of shape – do you want to keep getting sick? You should start running and taking better care of yourself.” I had never had anyone say that before and was motivated (and a little miffed) so I started running and ran almost every day for a year. And when that same doctor performed my tenth surgery to remove my failed ileal pouch, it took only four hours instead of eight. Afterwards he said, “Your abdomen looked like you never had surgery – your adhesions were gone! Whatever you did in the last year, you should definitely keep it up!” I haven’t stopped running and exercising since.

Q: What can we do to stay healthy if we have to travel during a health crisis?

Amber: It’s important to keep a change of ostomy supplies on your person when traveling and make sure to stay hydrated. We all have leak stories. One time I was hiking in the Great Smoky Mountains and my pouch fell off. I had to change it in a porta potty! And, of course, I use hand sanitizer constantly, especially on my phone.

Paul: I’ve had leaks on planes and have had to run to the washroom with it pouring down my leg. Never a dull moment with an ostomy some days! I keep supplies in a small kit. I also always wear an ostomy belt, which helps keep my pouch secure. When my wife and I travel now we wear masks and bleach wipe everything we have to touch.

Q: Where should people turn when having a really bad day?

Amber: Stay connected with nature and focus on things that are beautiful. Take a moment and be still. Keep grounded and turn to your faith. It’s OK to cry and let those emotions out. Recognize it, feel it, and embrace it. There’s a myth that if you ignore depression it will go away. You have to deal with it before you can move ahead. Last year after my wedding I was feeling down and didn’t know why. I was too ashamed to tell anyone. So I decided to speak to my doctor. He ran some tests and it turned out that my vitamin levels were out of whack. Never be ashamed to talk to your doctor, that’s what they’re trained in.

Paul: Well, as I shared before, exercise has been a true lifesaver for me. When I’m down I also often turn to my family. Being vulnerable is hard especially when you’re sick. I often have trouble loving myself with a body that could turn on me and threaten my life at any moment. Just a few years ago, I was sick again and needed three surgeries and a prolonged hospital stay (almost a month). My wife slept every night at my bedside in the hospital. Through that I realized that perhaps I am loveable no matter what. When feeling depressed, another resource I often use is to connect to the ostomy community on Instagram and other social media. I’ve seen so many people get support from others all over the world. It’s definitely healing to share your story…and to hear others and know you are not alone.

Q: A crisis can present problems with participating in milestone events, such as graduations and funerals. How can people still stay connected?

Amber: If it’s a death, you can honor them by the way you live your life and stay positive. That’s how you can keep their memory alive. If it’s a graduation or birthday, plan something with the person or people when you’re feeling better or the crisis is over. Connection is so important. Check-in with people, even your happy friends. You never know what they’re going through. Gratefulness works too, I write down one thing I’m grateful for each day and put it in a jar.

Paul: I agree about gratefulness. In our family, we play a game every night called “3 GOOD THINGS” where we all go around and name three good things that happened each day. At our hospital, we are spending conscious time thanking people for the little things they do. Getting out of your head and thanking someone else is so essential and therapeutic. It’s so important especially if you’re down. Gratitude is as rewarding to yourself as it is to the one you’re thanking.

 

This is an excerpt from “Tips for Coping in a Crisis” in the Hollister Incorporated Ostomy Learning Center. Read the full article here.

 

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.

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How to Have a Thriving Social Life While Living With an Ostomy

 

Getting to a place where you feel confident in yourself and your new routine might take some time. There are many factors to consider following your ostomy surgery, but there are also many resources available to you while you are adjusting to normal life. Having a thriving social life is not out of the question, and with some time and patience with your body, you will be living your best life.

Beginning Stages

In the beginning, it will be important to keep some sort of a journal or diary as you experiment with new foods and beverages. Figuring out how different foods and beverages affect your body will influence your social life with regards to dining out. It might be helpful to eat smaller meals more often throughout your day as you record what foods tend to cause more gas or which foods are harder for your body to break down. Remember to drink lots of water and chew your food well.

As you move from blander and softer foods to a more regular and high-fiber foods, you will notice more regularity in your bowel movements. Understanding your body’s schedule will be key in planning outings, dates, and events. As you begin to venture out of the house more, remember to bring extra supplies with you and locate the restrooms should you need one with short notice.

Getting Out There

As your confidence builds, and your ostomy becomes routine and normal to you, saying ‘yes’ to more things will become easier and easier. If you were an active person before your surgery, you will be able to resume your active lifestyle. Whether going to the gym, running along the beach, hiking through a forest, or playing a pick-up game of basketball, exercise is key to keeping you mentally, emotionally and physically fit. While you will need to be cautious in the beginning so you can fully heal, there are few limitations on what your body can do with ostomy. If you are having a hard time figuring out what clothing or specific products will help to keep things in place during your activities, Coloplast has put together solutions for a variety of different sports and activities.

Making friends aware of your new ostomy can be intimidating at first. Preparing an informative, concise story to tell people may help ease your mind. Connecting with your friends and family can help you to stay positive and hopeful and will make the transition back to regular life much more manageable. Share as little or as much as you feel comfortable about your ostomy, but keep in mind that talking about it can be beneficial to both parties.

If you are in a romantic relationship, it is likely that your partner is already aware of your surgery and new ostomy. Good communication and honesty about your feelings and your partner’s feelings will be vital to the future of your relationship. It may take time for you to feel ready to be sexually active following your surgery, but exploring this as a couple and in the timing that works best for you will go a long way in helping your relationship succeed.

Meet Others Like You

You are not alone in this new change to your body. There are many people living with an ostomy already out there who are interested in connecting and sharing their stories. It can be helpful to talk to someone who is in a similar situation and who will understand the ups and downs of this new routine. Getting connected to a group or network that shares your story can be radically healing and help with your confidence and self-esteem, not to mention broaden your social network. If you aren’t ready to venture out to a group just yet, you may want to begin by watching and hearing stories from others living with an ostomy to see how they were able to travel, date, go back to work, stay active, and enjoy a healthy sex life.

Whatever stage you are at in your recovery and healing process; if you are adapting to a new routine with your pouching system or working your way to sexual confidence with a partner, know that it is possible. While it may feel daunting to say yes to a date or go out to dinner with a group of friends, with just a little extra planning and the support of others, you can have a thriving social life with an ostomy.

 

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.

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River Rafting Camping Trip with an Ostomy

My name is Jodi Capobianco, I am 54 years old and have a permanent ileostomy.  Five years ago I was diagnosed with severe off-the-charts constipation and was to receive a temporary loop ileostomy.

I am so thankful that I did not let having an ostomy get in the way of me missing out on this awesome adventure.

Shortly after my surgery, I began having problems. To make a long story short, my colon became diseased and they removed it giving me a permanent ileostomy.  Unfortunately, shortly after my colon was removed I developed an abscess.  I actually ended up developing seven more before an amazing surgeon figured out that I had a leak.  He performed a small bowel resection and made my loop ileostomy an end.  That was over two years ago.  I was so weak when I came home I was using a walker.  I can honestly say life is now amazing. In fact, I just got back from rafting the Colorado River in the Grand Canyon for eight days.

There were no bathrooms, heck there was no nothing just the big outdoors. I went with my husband, our trip started on a Saturday morning when we flew from Boston to Arizona. I was pretty pumped when my ostomy was not an issue while going through security.  Not that it is a big deal to be patted down, but it was nice to be able to skip it.  When I fly I try to limit my intake so I am not having to empty on the plane.  I also stay away from anything carbonated when I am out, so no bubbles.  We arrived in Arizona after traveling for about 9 hours. We headed to our hotel, where of course our room was not ready and got lunch.  I knew I would be near a bathroom for the afternoon and evening so I ate what I wanted.

That night was the orientation for the trip. I learned we would on the bus for about three hours the next morning with no bathroom break. Departure time was 6:45 am.  I decided not to eat breakfast but brought a bagel with me. I ate about an hour into the trip. I knew I would be able to use a porta-potty at the boat launch.  On the morning of the trip I changed out everything.  I ended up using wafers that were precut.  I usually cut my own but I did not want to have to deal with that. I used closed-ended bags that were waterproof. I am usually a drainable girl, but again I knew there really would not be a place to drain anything especially during the day. I also used three brava strips for reinforcement, and I use a ring under my wafer.

I had two complete changes in my dry bag, then in my shorts or pants I had three bags in a zipper pocket, I also kept a bag in my backpack in case we went hiking.

We were all given two dry bags for our stuff, one we could get to during the day and one we could not.  In my day bag, I had enough supplies to do two complete changes, 5 disposable closed ended bags as well as five bags I could put the disposable bags in.  The first night when we stopped at camp I was given my own ammo box.  This was a metal box that sealed.  I was able to put all my waste into it.  In the morning I would give the box to the trip leader, she would empty it and then when we stopped at camp for the night she would discretely give it back to me. The only bathroom in the camps were either behind a tree or rock and they consisted of a yellow bucket with a toilet seat on it to pee in and a metal bucket that contained waste.  I would pee in the yellow bucket but luckily did not have to deal with the smelly bucket for pooping in.  I would simply pop bags on and off when I needed to.

When we arrived at the camp for the night, which generally was a large sandy area by the side of the river, we all helped unload the boats.  Once the boats were unloaded, one would find their campsite for the night, lay out a tarp and sleeping pad. This is when I would take a minute to get organized. For me, this consisted of placing two closed-ended bags and baggies in a plastic cup near my sleeping bag.  This was so I could change in the middle of the night if I needed to. I also would place my headlamp nearby so I could find it easily in the dark and see what I was doing.

When popping a pouch on and off, I would place a small baggie (I used the blue ones that came with my bags) under the disposable bag so when I unclicked and popped it off it went right into that bag.  Next, I would pop on a new pouch and be good to go.  For the most part, I changed bags when we got to camp, right before bed, once in the middle of the night and when I woke up.

Having the precut wafers and closed ended pouches made all the difference in the world.

During the day I would set myself up as follows:  I had two complete changes in my dry bag, then in my shorts or pants I had three bags in a zipper pocket, I also kept a bag in my backpack in case we went hiking.  I would change bags after breakfast before getting on the boat and when we stopped for lunch.  I was generally good until we got back to a camp.

To change I would hide behind a rock or a tree or sit on my sleeping bag with my back to everyone.  I also had a small package of biodegradable baby wipes with me.

There were two times I had to change everything.  The first was three days into the trip.  I got off the boat and my skin itched.  This is generally a sign for me that something is leaking.  I had been in the water a ton this day so I was not surprised.  I peeled off all the adhesive from the brava strips as best I could, dried the area off, and put on a new wafer and popped on another bag.  The second time was two days later.  I knew that this time I really needed to wash the area and try to get a bit of the adhesive off my skin.  So, I went down to the river with a small washcloth that I had packed.  I took everything off and dipped the washcloth in the river and then scrubbed my skin as best I could.  I dried the area, covered my stoma with the cloth and went back to my campsite where I put on a new ring, wafer, brava strips and pouch. I did this all while trying not to get any sand on my skin.  Having the precut wafers and closed ended pouches made all the difference in the world.

The last day on the river was a half day.  Once we got off the boats we are onto a bus for three hours.   Luckily there was a real bathroom stop.  Here I just switched out bags.  We got back to the hotel and into the shower I went.  I had so much adhesive on my skin.  I used a ton of adhesive remover, then took a face cloth and washed the whole area.  My skin looked pretty good for being engulfed in adhesive for 8 days lol.  It took a while to get all the adhesive off.  It felt amazing when it was.  Obviously, when I got out of the shower I dried off and put on a new ring, wafer and bag, no brava strips.  My skin was very happy for this.

I am so thankful that I did not let having an ostomy get in the way of me missing out on this awesome adventure. I refuse to let anything get in my way of living.  I attribute the success of this trip to closed-ended bags, precut wafers, being organized but also for patting myself on the back and having an awesome attitude.

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Vlog: Prolong Summer Pouch Wear Time

It’s summer and you should not let your ostomy stop you from swimming, exercising and having fun in the sun. Sweat and lots of time in the water can decrease the number of days between pouching system changes for some but there are some simple things you can do that can help. Elaine shares in this video several tips to get your wafer to stick longer. Check out her advice to prolong adherence of your ostomy pouching system especially when swimming, exercising and sweating more this summer.

UOAA also has more information on swimming and advocacy tools for any issues with access in public facilities.

Make sure to grab your FREE GUIDE: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com

Elaine O’Rourke is the creator of the program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others. She is a contributing writer to the national Phoenix Magazine and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.  

Web: www.elaineorourke.com

Facebook: https://www.facebook.com/ostomyibdlife/ 

Instagram: https://www.instagram.com/elaineorourkeyoga/ 

Email: Elaine@ElaineOrourke.com 

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Get Moving for Ostomy Awareness

The Annual Run for Resilience Ostomy 5k is Coming to You!

 

It’s a good year to celebrate your life. To get outside in the fresh air and get moving again if you can. To speak out and make noise that “Ostomies Are Life-Savers” and not something to be stigmatized or feared.

To keep everyone safe and adhere to any local COVID-19 guidelines all Run for Resilience Ostomy 5k events are being held virtually this year. That just means you can run, walk or roll wherever you want (even inside on a treadmill) and still be a part of Ostomy Awareness Day activities on Saturday, October 3, 2020.

We’ll be celebrating an ostomy community that has shown resilience long before “resilience” became the buzz word of the year. With your registration for the Worldwide Virtual Ostomy 5k, we’ll mail you a race bib, unique 10th Anniversary Ostomy Awareness Day Race T-Shirt and special stickers and sponsor giveaways. If you want to show your state pride and live in Alabama, Arizona, North Carolina, Idaho, Michigan, Pennsylvania, Oregon/Washington please consider supporting your local “Virtual 5k event.” You may have the additional opportunity to pick-up a race bag along with the t-shirt and giveaways at a safe location organized by the local race directors. (MI Run participants T-Shirts, race bags and materials will be mailed.)

You don’t have to be a runner or walker to support these charity events. This event has traditionally been a critical fundraiser for UOAA and the advocacy, resources, and educational materials provided for anyone in need of ostomy or continent diversion surgery. The canceling of in-person events will be a fundraising challenge we’ll need help to overcome. 

Please consider donating or starting a fundraiser like Catherine Salisbury Catherine shared her inspiring story on the fundraising page she created on the Virtual Run Sign-Up website.  

I was diagnosed with a hereditary colon cancer disease, Familial Adenomatous Polyposis (FAP), in 2015. This diagnosis both saved and drastically changed my life. In 2016 I had a total proctocolectomy surgery with a temporary ostomy for three and a half months.  In 2019, desmoid tumors were constricting the blood flow to my j-pouch so I had to have it removed and had a permanent end-loop ileostomy created.  It has been an incredibly difficult journey, but I am beyond blessed with an amazing support system. My family and friends have kept me going through this whole crazy journey. I am beyond grateful for them.

I hope to raise money to help other ostomates who do not have the same incredible support team I have. -Catherine Salisbury

You may be surprised by how supportive others will be if you share your story and create a fundraiser. Catherine increased her fundraising goal to $1,000 after the response from her supportive friends and family helped her reach her original goal.

We also have incentive gifts featuring the “Ostomies Are Life-Savers” logo for those who reach goals of $250 and $400 and anyone who donates or raises $30 or more will receive a special bandana for themselves or their pet.

Starting a Group/Team is also a great way to connect with friends and family wherever they live so they can show support for your journey.  Groups of WOC nurses can claim bragging rights for regional participation (the team WOC This Way in Indiana is leading) and co-workers may have fun in challenging other departments. New this year we are excited that supporters of WOCN Society’s Fund the Future program are coming together for the We All Walk Together Team.

UOAA Affiliated Support Groups such as the one in DuPage County, Illinois looks forward to gathering members for a virtual event every year and are forging ahead with a team and fundraiser even as they anticipate COVID restrictions will not enable them to all meet up together at their usual park location. The year’s Exclusive Diamond Sponsor of the Ostomy 5k, Hollister Incorporated, is also planning another employee-wide event and we expect to hear about other sponsor events soon.

Ostomy Support Group of DuPage County at their Virtual Ostomy 5k in 2018, the group will be back this year with social distancing guidelines in mind.

For some extra motivation consider starting a couch to 5k training group with some friends to get ready and feel great in October. 

Wherever you choose to run or walk be sure to let others know about it to truly raise ostomy awareness. Take pictures of yourself doing your virtual race and email them to us or share/tag them with our public Facebook page. Hashtag your photos or stories #RunforResilience and we may repost on Twitter or Instagram.

We are very grateful for our national sponsors who help offset the costs of the events and believe in this mission. They have stepped up during this difficult year and remain committed to this event and the cause of ostomy awareness. 

Rally your friends, co-workers, and family to the cause of ostomy awareness. People are still choosing death over life with an ostomy and it’s up to you to help show the world what people living with an ostomy are really capable of.  

 

Register for a virtual event near you or for the worldwide Virtual 5k. Sign-up before 9/11/20 and save up to $5. The special price of $17.50 includes a special 10th anniversary of Ostomy Awareness Day technical t-shirt (Michigan is $22.50 shipping included). Worldwide Virtual Event Registration is recommended for those not near one of our local virtual events t-shirt packet pick-up locations.

Click Here to Register

Click Here to Donate or Start a Fundraiser

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Swimming with an Ostomy

Having an ostomy should not prevent you from swimming. Below are some helpful tips to get you feeling confident in the water, whether it’s in your own backyard pool or at a beach.

  • You can swim or be in the water while wearing your pouching system. Remember, your pouching system is water-resistant and is designed not to leak with the proper seal. Water will not harm or enter your stoma.
  • Prior to swimming, make sure your seal is secure.
  • Empty your pouch before swimming. Also, ensure your wafer has been on for at least an hour prior to getting wet. If you are nervous about output, eat a few hours before jumping in.
  • If you use a filtered pouch, use a filter cover sticker on your deodorizing filter to prevent water from entering the pouch. You can remove the cover once you are dry.
  • Wear what makes you feel the most comfortable. Swimming with an ostomy should be fun and worry-free regardless of what you’re wearing. Shop with confidence knowing there are so many options that could work for you.
  • Always carry extra supplies in case you are somewhere where supplies may not be available.
  • For extra peace of mind, use barrier strips if you will be swimming for an extended time.

me+ Team Member Tip: “I tell people who are scared to swim with an ostomy to spend a few hours in the tub on a lazy day. If your pouching system holds up to that, then the pool should be a breeze.” ~Sarah B.

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.

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Vlog: Core Exercises with an Ostomy

If you are wondering how to do core exercises safely with an ostomy and activate your core muscles this is the video for you. Peristomal hernias is one issue people hope to avoid through core strengthening. More information on developing hernias after ostomy surgery can be found as part of UOAA’s New Ostomy Patient Guide.

If you are active and have fully recovered from surgery here are simple exercises anyone can do as well as some exercises you can build up to. Always consult with your doctor before starting an exercise regimen.

Make sure to grab your FREE GUIDE: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com

Elaine O’Rourke is the creator of the program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others. She is a contributing writer to the national Phoenix Magazine and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.  

Web: www.elaineorourke.com

Facebook: https://www.facebook.com/ostomyibdlife/ 

Instagram: https://www.instagram.com/elaineorourkeyoga/ 

Email: Elaine@ElaineOrourke.com 

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