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

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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.

River Rafting Camping Trip with an Ostomy

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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.

Vlog: Prolong Summer Pouch Wear Time

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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 

Get Moving for Ostomy Awareness

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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

Swimming with an Ostomy

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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.

Vlog: Core Exercises with an Ostomy

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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 

Vlog: Ostomy Tips to be Active and Healthy

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Summer is coming and it is the perfect time to not let your ostomy define who you are or what you are able to do. Enjoy these wellness tips by Elaine O’Rourke. In this video Elaine shares her insights into diet, getting moving again, confidence and even her passion for surfing.

“Look at your mindset, that may be what is holding you back not your ostomy.”

 

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 

Simple Ways to Reduce Anxiety and Help Your Immune System

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By Elaine O’Rourke

With the increased and heightened attention on the coronavirus, it is naturally creating a lot of fear and anxiety. This fear not only affects the mind but also the body. Right now, you want to keep your immune system strong and focus on calming your mind and nervous system and of course use necessary precautions.

Proper Breathing, as well as other techniques, will help reduce cortisol levels (one of the stress hormones that can wreak havoc in your body) and helps promote the relaxation response in the body.

Deep focused breathing has so many benefits and there is a lot more science behind what the ancient yogi’s already knew. As a long time yoga teacher, I know firsthand how amazing proper breathing is. I credit it for helping me recover from surgeries much faster and for regaining strength. Wim Hof (the Iceman) has been instrumental in recent years for promoting the benefits through his method. Many scientific studies have been done on him proving that you can control the autonomic nervous system and immune response. The following is a basic guided breathing and relaxation video. 

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 

Ostomy Self-Care and Wellness Tips for 2020

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By Elaine O’Rourke

During the winter of 2005, I went from being an active, strong, 35-year-old yoga teacher to being completely debilitated, feeling like I was 100 years old and barely able to move or walk.

An extreme flare-up of Crohn’s disease resulted in a temporary ileostomy which was then made permanent after a year. I was down to skin and bones and had lost most of my muscle mass. My hips and whole body hurt when I slept as I was so skinny. There was very little that I could do. My body just needed to rest as it took too much energy for anything else.

When I began to regain my strength after my temporary ileostomy, I had a renewed appreciation for walking and what a good simple exercise it is. Just getting out for fresh air, step by step, seeing people and walking the beach. I had missed simply going to shops. Ahhh, to be able to move again, what a gift.

I had never considered going for my daily walk as a “gift” until I couldn’t do it. For many people, including myself, it’s not until things start going wrong that you realize how much you take your health for granted.

As I recovered I was able to slowly get back into my yoga practice and doing everything that I wanted to do. In fact, last year I started surfing which is now my greatest passion. It was previously the one thing I thought I could never do with an ostomy.

My point being, having an ostomy does not mean you can’t exercise or do sports. Just do them mindfully and within your limits. Taking good care of yourself is now of utmost importance. Real self-care not only addresses how we take care of our physical bodies but also how we deal with our emotions and how we think. After all, everything is connected.

Life with an ostomy has a lot of pent-up emotions, thoughts, and challenges. The physical body also holds on to memories and traumas within its cells. This is why you may experience or even hear of people who recall things when getting a massage, or you might start crying when you get bodywork done or when you are moving mindfully in a yoga class. The “feeling experience” is providing a release for these memories.

In my program “Surviving to Thriving: Overcoming Ostomy Challenges so you can Live a FulFilling Life” I focus a lot on the mental and emotional issues that occur but also on the importance of keeping active and making healthy lifestyle choices. As you journey into the New Year and decade what are the more tangible things you can do for your physical well-being? We all know that New Year’s resolutions go out the window by the second week in January, or that they never happen at all.

Instead, consider doing things that will contribute to your health and happiness and set a plan in place. If you find it hard to keep yourself motivated or don’t know where to start then reach out and contact me.

Strategy tips for self-care

1) Move your body
Buying a gym membership is useless– unless you use it! Our ancestors did not live sedentary lives, yet, these days in general, we are very attached to sitting around. Many people work at desks, sit in cars commuting and then sit on the couch to chill out! But our bodies are designed to MOVE.

Tip: Get up and walk around more, even set a chime to go off on your phone to remind yourself. As mentioned, walking is a great way to keep things moving and it’s free. Even a quick five-minute walk is beneficial. Meet a friend for a walk instead of coffee, or both! Move your arms over your head more. Add in some simple stretches. Basically, MOVE as much as you can as that is what our bodies are designed to do.

2) Food choice
If we think we are going to be “depriving” ourselves of something, then we will do anything we can to sabotage our best intentions. For example, If we say we are “giving up chocolate” then chances are we become obsessed with thinking about chocolate and our resolution only lasts a day! Your body is like a temple and keeping it healthy requires the right choices. This will affect your ostomy output, energy levels, muscles, organs, bones and joints.

Tip: Focus on adding in certain foods that you know will be healthier for you. Hint – these foods are mostly in the fresh produce sections of the supermarket. Before you eat and drink ask or even visualize how your body will respond, how your organs will feel, how well your GI tract will digest. Eat slowly, chew and enjoy your food. Notice how it affects your system, energy levels, and your ostomy output.

3) Make it fun
If you dread doing something, then it won’t get done. So find something that is enjoyable. Not everyone likes exercise or sports but there are many different ways that you can treat your body with more kindness.

Tip: Dancing is a great way to move. Maybe go out to hear live music where you can move on a dance floor, or take a dance class. Put music on at home that energizes you. Walk up and down the stairs a few more times. Use a fitbit watch as a way to incentivize yourself.

4) Schedule time for yourself
There are a lot of distractions that pop up during the day and before you know it, you haven’t done anything you intended to do and the checklist is still staring at you.

Tip: Schedule in your planner when you are going to do your (walk, fun movement, cardio class, yoga, meditation, etc.) Be consistent and try and have it at the same time and on the same days each week.

5) Know that you deserve it
There is nothing like a promise of a “treat” or “something special” or to plan out “bribery” if you do something! Self-discipline comes more naturally to some but it takes practice.

Tip: As you decide the new ways you are going to do things in 2020, also give yourself a promise of a self-care present when you complete your goals. As you try more nutritious food, exercising, moving your body (because that is what it is supposed to do) then treat yourself to a massage, tickets to a show, a work-out outfit (that you now must have because you actually enjoy exercise) a good book, and so on!

 

Elaine O’Rourke is the creator of the online holistic 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, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.
A free guide is available: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website
www.ElaineOrourke.com
Elaine@ElaineOrourke.com

Justin Mirigliani’s Story

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Ostomy Strong and Giving Back on the Ice

By Ed Pfueller, UOAA Communications and Outreach Manager

In 2015 things were looking up for Justin Mirigliani. An active father of two, his ulcerative colitis symptoms were in remission. In his free time, he was an avid weightlifter and loved skiing and playing ice hockey.

He probably could have been forgiven if he wanted to skip his yearly colonoscopy, it was his 10th test since his ulcerative colitis diagnosis in 2002. But his doctor made sure he was scheduled, and he went in. It was a decision that likely saved his life. He discovered he had to have his entire large intestine removed due to a severe precancerous condition called high grade dysplasia. A video before his ileostomy surgery shows the raw feelings of this life-changing event and the video below shows his journey to healing and thriving.

Since that surgery on September 24, 2015, he has vowed to do all he can to help others who suffer with IBD and to help remove the stigma attached to those who have a “bag.” Justin is determined to show, through his active lifestyle, that nothing is impossible with an ostomy. Justin has given himself an epic challenge to prove this point. He has continued weightlifting and is trying to become the first ostomate to bench press 405 lbs. You can see this journey documented on his YouTube channel The Strongest Ostomate in the World. (Parastomal hernias are a risk for all ostomates so check with your doctor before starting any exercise regimen.)

Though Justin had developed a small bulge around his stoma very early on, he is careful to complete lifts that do not add excessive internal pressure, like deadlifts or squats. He wears a binder to help support the area around his stoma anytime he lifts anything remotely heavy. In the past four years of heavy bench pressing, shoulder pressing, and bicep work, there has been no change in the bulge around his stoma. So as not to neglect his legs, Justin runs flights of stairs with a weighted vest. As he says, “It’s just a matter of improvising.”

Justin has also given back to the IBD community by creating Checkmates Charitable Association. Checkmates’ main event is a yearly hockey game with NHL alumni. Recently Justin decided to expand his charity’s mission to also benefit the ostomy community. “The UOAA Conference in Philadelphia has definitely opened my heart to wanting to include UOAA and do anything I can to help our community,” Justin says.

In 2020 Checkmates is expanding its mission into Canada by sponsoring a “Disease Without Borders” International NHL Celebrity Hockey tournament with its first game this February in Toronto, Ontario. The winner of that tournament will come down to the U.S. to play the Checkmates team at the Philadelphia Flyers Skate Zone in Voorhees, New Jersey in April. Justin’s ultimate goal is to use this year as the template for NHL Celebrity Hockey games and tournaments throughout cities in the US and Canada.

Justin says of the fundraiser, “We will never stop striving to make the lives of those with IBD and those living with an ostomy the best lives they can be!”

Like any other nonprofit organization, Checkmates is always happy for helping hands. If you are interested in volunteering with Checkmates please contact Justin. Checkmates is also looking for hockey players who want to play on the same ice with NHL stars. Players must be 18 or older, be able to ice skate forward and backward and be able to shoot a hockey puck.

Justin is grateful to his doctors, who saved his life, he and his family created this PSA to warn everyone to get their colonoscopies. Please share it. It just may save a life!

Until IBD has been eradicated and every ostomate is properly cared for, Justin promises that Checkmates will be on the front lines fighting for these communities to the best of its abilities. Justin believes “No matter what, your illness or ostomy will not hold you back!”