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

Register now for Session 1: https://us02web.zoom.us/…/reg…/WN_i7MWMk7RQ7mmtPpWGsrDbQ

 

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

Register now for Session 2: https://us02web.zoom.us/…/reg…/WN_Hi7CnbBVSIuUW68bAQBjXw

 

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.

 

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.

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

A year with an ostomy provides challenges and blessings

My name is Jasmine and I was diagnosed in 2016, at the age of 23 going on 24, with stage three colorectal cancer. I am a survivor. I went through multiple surgeries, chemo, radiation, and an ileostomy.

Many people think that having to wear an ileostomy bag would be unpleasant and very difficult. There is some truth in that at first, but I learned on the journey that it was a blessing.

Without an ileostomy, I would have not have been able to have my cancer (tumor-size of a peach) taken out. Without having my cancer out, I might not be here today. There are challenges that I faced such as my bag leaking. There were some nights when I would wake up and the stool would be everywhere. It was very frustrating but I managed to get through. One day I asked myself, “is this life?” Just like anyone else I would feel down. I knew it was ok to go through the emotions but I started praying to God that things would get better. My faith, family, and friends is what got me through.

Once I explained to my treatment team about what was going on, they insisted that I have a nurse come out two-3 days out of the week to help assist with my ostomy. Thanks to Johns Hopkins in Baltimore, they gave me resources as far as where to order good quality bags that were covered by my insurance and I ordered from a supply company. They started by giving me free samples to try and then I started to order them frequently because I liked the quality and they also provided a kit that included scissors, ostomy bag holder, and barrier rings. The scissors were for me to cut the baseplate to get it to the exact size of my stoma so that it could fit properly. This was all new to me but in due time it became the norm.

The barrier rings were great because it is what protects the skin because I had issues with my stool getting on my stoma. Whenever the stool would rub on my stoma it would burn so the rings help protect the stoma and leaks.

I do not regret anything I went through though because I came out a stronger person.

The advice I’d share would be to empty your pouch on a regular schedule to avoid overflows. I ate small frequent meals because I notice when I ate a lot, my bag would fill up. Make sure you’re drinking enough fluids throughout the day as well. I had to Introduce foods to my diet one at a time to determine how it would feel. I always made sure that I had bags everywhere I went.

I had the ileostomy for almost a year and I was told that it did not have to be permanent unless I developed problems down the road. In April of 2017 I was able to get it reversed (taken off).

Some other challenges from the cancer were that I had a section of my rectum removed and one of my ovaries removed. I cannot have kids on my own because both of my Fallopian tubes were removed as well so I will have to go through a surrogate, knowing this, I chose to freeze my eggs.

Being that a part of my rectum was removed I have complications from time to time. I am now 29 and although I still have complications I’m so happy to still be here and share my testimony with others as well as help any others who are encountering the same illness.

My recommendation to others with an ostomy and going through this process would be to be confident in your bag. I never looked at myself as disabled, I wore my bag with pride. There were a few times when I made a design on my bag to make it my own.

One thing I went through was being able to see who my real friends were through this process. I lost some friends in the process but gained even better friends. I had trouble dating due to the fact that people were intimidated by my bag and everything I had to go through.

I do not regret anything I went through though because I came out a stronger person. Life is too short to be down, I survived cancer, I was almost at the end of the road. I was in way too deep to just give up. Do not give up, I want those who see my story to reach out to me if they need to vent. It helps to talk to someone who actually went through the same experience.

With the help of my family real friends, and God I was able to go through this process gracefully.

Photo Cred:  Dave Camara / Camara Photography

 

By Ed Pfueller, UOAA Communications & Outreach Manager

If you’re looking for Patrick McKinney you’ll likely find him outdoors. Depending on the season, McKinney, 54, of New Market, Maryland, can be found speeding down a ski slope, powering up a hill on his bike, tending to horses, or photographing his daughters playing sports.

That wasn’t always the case.  In 1984, as a 17-year-old, while donating at a high school blood drive, he was found to be anemic. The formerly active teen had been experiencing incontinence with blood loss for 18-24 months and was afraid to tell anyone.  After confiding in his mother and seeking a diagnosis, a colonoscopy revealed ulcerative colitis. By his mid-twenties he found himself hospitalized several times after his body stopped responding to conventional steroid-based therapies.  In 1993 he had the first of five surgeries that over the years eventually led to a temporary ostomy and a j-pouch. He was plagued by stricture problems and other issues with the j-pouch. “With the j-pouch I was still going to the bathroom 15-20 times a day when it was bad,” McKinney remembers. When another surgery was required in 2004 because his j-pouch perforated leaving him septic, his doctor at the Cleveland Clinic prepared him for the fact that depending on how it went, McKinney could wake up with a permanent ileostomy.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years”

Indeed that was what happened and he experienced the struggles so many new ostomates have while trying to adjust both mentally and physically. McKinney now says, “Getting an ostomy was the best thing that ever happened to me, I got my life back.”

McKinney credits reading Rolf Bernirschke’s book Alive & Kicking for encouraging him to not be held back by his ostomy. “His book got my life back on a normal track. I started being an advocate and lived life again.” McKinney recalls.

McKinney wrote to Rolf and was honored to receive a Great Comebacks Eastern Region Award in 2008, which included the chance to meet the inspiring former NFL Man of the Year.  Since then he has embraced taking part in sports he had never even tried before having ostomy surgery.

McKinney’s first major post-surgery athletic challenge was competing in a half-marathon in Sonoma, California in 2009. The success of it inspired him to try other competitive sports. A family ski trip to Colorado piqued his interest in alpine ski racing. After entering an amateur event in 2014, he was surprised to learn his time qualified for nationals in his age group. After that he was hooked on “running gates.” McKinney has been alpine racing ever since and is a member of NASTAR’s Team Zardoz and the United Ski And Snowboard Association (USSA) Mid-Atlantic Masters Ski Racing Association and trains at Montage Mountain in Scranton, PA.

During the rest of the year, McKinney can most often be found on his bicycle touring the rolling hills of rural Maryland. As a member of the Frederick (Maryland) Pedalers Bicycle Club he rides over 3000 miles per year including events like the Tour de Frederick and the Civil War Century.

“It’s like being a kid again, wind blowing in your hair takes you back to your teenage years,” he says. For those hesitant to try riding again McKinney advises “Being prepared helps to put your mind at ease.” “Have a plan and know where the bathrooms are at local parks, I empty right before to go out. The back pocket on a cycling jersey is perfect for bringing extra supplies and wipes. My ileostomy tends to not have much output when I’m being active.”

In 2019 McKinney heard that UOAA’s National Conference was coming to Philadelphia, PA and welcomed the opportunity to see Rolf again and check out the unique event. Talking to other ostomates at the conference inspired him to do more with UOAA. “It helped me realize this is a chance to see what I can do, and that it is the right time to get more involved with the Frederick Area Ostomy Support Group.” McKinney has been an active member and is now the group’s President, supporting their activities even as in-person meetings were suspended this past year. In just the past few years he has offered his perspective as an ostomate to nursing students at a local community college and as an ostomy patient visitor. In support of Ostomy Awareness Day, he helped to procure proclamations from local government and organized a walk for the Run for Resilience Ostomy 5k, a major fundraiser for the programs and services of UOAA.

“Getting an ostomy was the best thing that ever happened to me, I got my life back.”

“The biggest thing is to provide some hope.  Almost everyone is devastated and so unsure about how to live through this experience,” McKinney says. On a national level, McKinney is now a member of the United Ostomy Associations of America Education Committee.

“I try to lead through living my best life. Sharing what I can do, but also keeping in mind to listen to your body. Get out there and walk, or ride on a bike.  For most, an ostomy will not impact that, I try to be encouraging and positive.”

His advice for other ostomates looking to get active? “Your only limitation is your mind.  If your doc says you are healthy enough do it, hydrate, hydrate, and always be prepared.”

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.

Ostomates often struggle with fashion and feel their options are limited. Without a doubt, part of the journey to adjusting to your ostomy is finding ways to dress yourself that is both comfortable and still allows you to express your individuality. This was no different for Deirdre, who felt that her passion for fashion and style were taken away from her after her ostomy procedure.

Fortunately, clothing designers have recognized that women come in all shapes and sizes, so you can now find pants with a variety of waistline heights. This allows you to find a style to fit your body and your needs. For active wear, consider wearing yoga pants or stretch pants to help support the pouch during exercise. You might also try biker-style shorts since they can be worn alone or layered under shorts, exercise pants or other stretch pants.

Part of adjusting to an ostomy also includes finding the right pouching system that fits you as well. With the help of her stoma care nurse, Deirdre found a pouching system that worked for her, and she regained the confidence to go out, go to work, socialize with her friends, and do all the other activities she dreamed of being able to do when she was in the hospital. For Deirdre, fashion and style are important aspects of her life, so having a pouch that works with different outfits allowed her to feel like herself again. Her journey with chronic illness and living with a stoma has become so much more about self-esteem, body image, and loving herself. According to Deirdre, “Once I went out and started getting back to normal life again, no one ever would’ve known that I had a stoma, because the bag was so easy to wear and was hidden under my clothes.”

Deirdre found a discreet pouching system that fit her well and gave her a feeling of security, which helped her regain the confidence to leave the house in skinny jeans, or even sports leggings. Finding a pouching system with the right fit to Deirdre’s body meant having the confidence to socialize again. Although there may be some styles of clothing you want to avoid after surgery, you still have many choices open to you. See which styles you like the best, and which you find most comfortable. Every body is different and finding the right fit can make the difference between confidence and insecurity.

 

*Deirdre is a Coloplast product user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Call your healthcare provider if you have any medical concerns about managing your ostomy. You may also contact your Coloplast® Care Advisor for product usage and availability questions at 1-877-858-2656.

Prior to use, refer to the product ‘Instructions for Use’ for intended use and relevant safety 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.

By Makeda Armorer-Wade

How many times have you thought “why me?” Well I get it.

An Ostomy is not an elective surgery. Most people who get one are having challenges with a health condition, or an accident that will require them to get one. I got my first Ostomy after a four-decade battle with Crohn’s disease. I remember that day like it was yesterday. I can’t remember which bowel resection I was up to. But I know that something had gone dreadfully wrong. I had the surgery and had just moved from step-down (one step below ICU, where you are kept until you become stable), to a regular room. 24 hours into that room assignment something inside began to rupture. That night I contacted my doctor who scheduled me for an intrusive test five hours later. I was in too much pain to tolerate the test, at which time they realized that I would have to have an emergency ileostomy. I was in the loneliest place in the world. I had just had a seven-and-a-half-hour surgery and I had to go back in. I did not know how my body would be able to handle it.

My family who had come to the hospital in the wee hours of the morning, were told once again, that emergency surgery would have to be done in order to save my life. Nobody was prepared for the news of an ileostomy. (An ileostomy is when they divert your intestine from the inside to the outside of your body, usually at the lower end of the small intestine called the ileum.) Neither myself or my family knew what this was, and while they explained it to me I began to ask what other options we had. Of course, the answer was “none if you want to live”. I responded the way that I always do with “ok, let’s just get this done”. I didn’t have time to express fear. Because, I saw the look on my family’s face as they began to draw on my belly in the elevator to determine the site of the surgery. I was scared, angry and worried because I had no control, so I prayed.

My ileostomy taught me a lot about life and stamina. I became even more determined to learn everything I could to make this a smooth transition.

After the surgery I had my consultation with my WOC nurse and began my new journey. She was pretty amazing in how she explained everything and made sure that I understood the mechanics of taking care of my Ostomy. It was a daunting task. It was one of the longest days of my life and a big blur. My family was super supportive as I was so weak. But they didn’t have a clue what to do. They were ready to take direction from me. And while I have managed to keep a stiff upper lip through the first 14 lifesaving surgical procedures, this was different. I was grieving. I knew I had to figure it out, and my only consolation was that eventually it would be reversed (this is called a take-down). Well, I can probably tell you about that in another blog.

My ileostomy taught me a lot about life and stamina. I became even more determined to learn everything I could to make this a smooth transition. After learning to walk 10 steps from death’s door, over the course of 18 different surgeries, I eventually learned to work my P.L.A.N.© and you can too.

P.L.A.N.© stands for Prepare, Let go of Shame, Ask for help, Never Give up!

I tell my clients all the time that “life will teach you some things; that which you want to learn and that which you don’t.” In life we don’t always get to pick our lessons, but I am so happy that I learned a ton of them here. It allowed me to come to the conclusion that my fellow Crohn’s Warriors and Ostomate brothers and sisters needed the same support that I did after surgery. And so I am here. I am not a doctor or a nurse, just someone who cares about you. I wrote books and created a learning platform ThePossibilitiesLifestyle, to support your experience with the books and provide The Possibilities Lifestyle Coaching. My goal is to help and support as many people as I can. Please, I want you to remember this.

 

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.

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

I want to tell my story concerning my ileostomy in order for people to understand how it is living with one and how a person can live a normal life and more.

I had my original ostomy surgery 49 years ago in 1972 – you can imagine how surgeries, techniques and medicines have progressed since then. Twenty-five years old at the time, I spent several weeks in the hospital recovering. At age 24, I experienced my most serious bout of ulcerative colitis, and after several months with a tremendous amount of blood loss, it was determined that I would be better off having my colon removed, living with an ileostomy and staying alive, period.

Needless to say, it was a difficult transition from a “normal” body to one with a bag/pouch attached to my abdomen forever. Discharged from the Navy a couple of years before my surgery, I had been enrolled at the Ohio State University, and so decided to finish school and get my teaching degree. After the original colectomy procedure, a few more surgeries were required to correct a protruding ileum, but finally things settled down to where I could get back to a normal life.

Trying to live life to the fullest, I appreciate every day that I’m alive.

Admittedly, life was a little rough for a couple of years after my surgery, especially when it came to dating. I was embarrassed to mention my ileostomy and even today, am reluctant to tell people. it’s probably a personality trait, but I feel I need to get to know people before I tell them about me. However, the day I met my wife-to-be, I told her about my ileostomy and we have been together ever since; go figure.

In the past 49 years, I have graduated from college, gotten married, had a son, worked for the government, taught high school, coached football and tennis, and traveled extensively. I played tennis for many years, as well as golf. I’ve camped in the Rockies, the Grand Canyon and the Grand Tetons, traveled throughout the United States, hiked the Camino di Santiago in Spain and spent many vacations in Italy. I’ve hiked parts of the Appalachian trail and still love hiking to this day. An avid speed walker for the last 10 years, I qualified for the Senior Olympics two years ago and this year.

Working as a personal trainer for 15 years has been a satisfying retirement job. I still play golf and walk four to five miles almost every day. I wrote an exercise manual a few years ago, The Hotel Motel Workout, and have filmed and posted exercise videos on the internet.

Trying to live life to the fullest, I appreciate every day that I’m alive. One further surgery was necessary for a revision to my ileostomy a few years ago, but I feel blessed that the doctors talked me into having the original ostomy surgery 49 years ago. Life is good.