At sixteen, I got my first job doing janitorial work at an amusement park. As you might imagine, I wasn’t thrilled by the work, which included cleaning the restrooms. I remember coming home and complaining to my mother that I wanted to quit. Although I didn’t realize it at the time, her response would soon take on important meaning for me and the way I would approach the rest of my life. She said, “No, honey, you can’t quit. Our family does NOT quit.”

Her message of perseverance was never more critical than following the moment that changed my life forever – a turning point that resulted in my diagnosis of short bowel syndrome (SBS), a serious and chronic malabsorption disorder. Since that moment, I have had to show up for myself every day and make the decision to never quit.

In October of 1999, during the summer between my sophomore and junior years of college, my family’s car was hit head on in a two-lane highway when someone crossed the center line and struck us. I was in the backseat with my then-girlfriend (who is now my wife) buckled in with a lap belt when we were struck. The seatbelt wrapped around my waist and caused me to lose blood flow to my intestines, which then had to be removed. I was left with no absorptive function and diagnosed with SBS. Though some people may arrive at an SBS diagnosis as a result of other gastrointestinal (GI) conditions, my introduction to SBS was abrupt. One day I was a college basketball player and homecoming king. The next I woke up in the ICU being told I would likely never eat or drink again.

The accident left my wife similarly injured — and also diagnosed with SBS — while my mom and stepdad also suffered injuries. Following the accident, our family church would bring food to the house to help out, only I couldn’t eat it. Seeing those casseroles had always been a sign of care, but in those early moments it was torturous. Getting the care I needed early on was a struggle – so much so that my grandma, an amazing supporter of mine, was one of the first people to step in and learn how to administer my total parenteral nutrition (TPN). I’ve been on TPN every night since then.

Due to my SBS diagnosis, for nearly two years, I also needed a jejunostomy, which is an opening created through the skin into the jejunum (part of the small intestines) that can be used for a feeding tube or as a bypass during bowel resection. The sudden need for an ostomy was difficult to accept at first, as I adjusted to my new life with SBS. As time went on and I finally became a bit more comfortable with my ostomy, I remember landing an interview for an internship I really wanted. However, I was so nervous during the interview that my sweat actually caused my ostomy to leak. Although I got the internship, which was a big step towards my personal goals, the experience was a learning curve in becoming confident in the balancing act I’ve had to develop over the years.

I was able to have the ostomy reversed before my college graduation and even graduated on time – a huge victory in the early stages of my SBS journey! But despite triumphing over those physical challenges, I had more hurdles to face, particularly in terms of my mental and emotional health.

For so long I had identified myself as a basketball player, an athlete, and in a single moment I was told that I would never play again. I cannot describe how devastating that was to hear. I wanted to fight, to call on the determination that had been a large part of my high school and college athletic career, but it was so hard to have that motivated mindset after being blindsided by a diagnosis of a rare disease.

Understandably, I was completely down in the mud for the first few months. I would lie in bed watching movies for hours because facing my reality was too heavy. After months of watching others live out their lives in those movies, I decided that I needed to stop avoiding the fight. I decided that, just as I had trained as an athlete, I now needed to train myself to live. I knew I had to focus on what I could control, lean into the discomfort and push through the obstacles to live life on purpose. Something I’ve come to call “living an intentional life.”

My decision to adopt an intentional mindset and train myself to live turned small steps into monumental milestones. The first thing I tasted after those initial months without any food at all was a red cherry Life Saver candy (ironic, right)? That was my small step. When I tried to make the leap to solid food, I admittedly pushed too far, too fast. Doctors told me that I could eat three bites of food, that was all. So, I bought myself a six-inch Subway sandwich, cut it into three pieces, and ate it in three bites! Regrettably, this wasn’t great for my digestive system at the time. But, it was a learning experience and it felt like progress to me.

To the disbelief of my doctors, and others around me, this shift in my mindset – my transition from victim to victor – translated to my physical health as I began to make steady progress. Nevertheless, I experienced challenges as I navigated how to best advocate for myself and balance my SBS management goals with my personal goals for living my best life.

It took a while to understand which types of care were best for me and the way I wanted to live my life. I am very thankful for my wife, who is a wonderful advocate, registered nurse and fighter. She is the one who was first able to step in and say, “No, this is not acceptable,” when working with my care team. It was hard at times to identify the right care solutions. For example, I initially had a Hickman (or central line), but the wires meant I couldn’t swim or shower. Both were too important to me to give up. Since I do not need to access my port for most of the day, I chose to have a high access port (chest level) that I can access each night instead of a central line that would interfere with my daily routine.

Adjusting to the new port was yet another obstacle, as I need to access it via needle. At first, I would get so nervous every night before that needle stick and I would just cry. But I am grateful I can trade that small amount of time each night for the ability to hold onto some important parts of my pre-SBS routine when I’m not hooked up throughout the day. For example, I remember how happy I was to take my first shower, something that I used to take for granted. I definitely used up all the hot water in our house that day!

These adjustments taught me to accept that I was not invincible and to instead focus on what I can control, taking small steps each day and forming habits to benefit me and my health. Though I have been on TPN every night since the accident, my TPN has evolved and is no longer my only source of nutrients. Now I take in ~30% of my nutrition from food and ~70% from TPN. I’ve also learned that sufficient levels of sodium and hydration are important, so now I salt everything and use lots of hydration tablets.

With my doctors’ support, I was able to start running again. In the beginning, I started with a few steps. Over time, I build up to just one mile each day. Then, I slowly built myself up to two miles, then three. Now, I have completed five half marathons! I continue to swim and play basketball, some of the things I worried I had lost forever because of my SBS diagnosis – I am so grateful they are still a part of my life.

I am also fortunate that my workplace includes a supportive team made up of healthy, go-getters who share similar mindsets to mine when it comes to living an intentional life. This work environment has encouraged me to meet my personal goals, including starting my own financial advising firm. Living with SBS can make the workday uncomfortable and unpredictable. But I establish boundaries and habits that set me up for success, such as the ability to avoid having meetings first thing in the morning or right after lunch when I might need to step away to manage gastrointestinal issues associated with my SBS. And my assistant is a great support in that area. Having those people in your life who have your back is everything.

Self-motivation is big for me, but connecting with others in the SBS community has been motivational in a different way. My wife and I went to advocacy group conferences early on, and I found it encouraging to hear from others with SBS. For example, a man who had been living for 55 years on TPN while continuing to thrive and take control of his journey inspired me to share my own story in hopes that others will see how it is possible to still live a great life with SBS.

I have experienced some very deep lows in my SBS journey, particularly in the beginning, but have learned to embrace the victories. I’ve even faced death, on one occasion in a very close call due to a staph infection near my port. It had brought my blood pressure down to 15/10 and forced the doctors to remove the port immediately. Yet, I’ve also seen the beauty of life – I have witnessed the first breaths of my children and so much more. I truly love life, and these experiences only further solidify my faith and perseverance.

This is a journey of ups and downs, but the downs don’t last. I believe we are not given more than any of us can handle, and I know that I can handle so much more than I ever thought I could. My faith, the blessings I have experienced in my life and the support of my care team, family and many others have brought me back to life. I would encourage anyone living with or caring for someone with SBS to be transparent about the challenges they may be facing and embrace them. Find opportunities within the obstacles and be intentional with your life.

To learn more about Short Bowel Syndrome (SBS), visit https://www.shortbowelsyndrome.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS.

This article was created by Takeda.

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

 

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.

My name is Katie Lee, and I was diagnosed with stage 1 rectal cancer at age 33, only eight months after the birth of my second child. My tumor was ultra-low in the rectum and required much of my involuntary sphincter muscles to be removed to achieve clear margins, so I opted for a permanent […]

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

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.

Colorectal cancer survivor Allison shares her ostomy story. “No one truly understands what you are going through physically and psychologically more than those who have been there themselves.” Check out her mythbusting videos and more.

By Elaine O’Rourke, Ostomy & IBD Health Mentor

When you are able to talk honestly about sex and intimacy, it will help build a healthier relationship. A chronic illness or an ostomy can bring up different issues around relationships, whether you are single or in a partnership.

You may wonder when to tell a potential partner about your medical history or how to rediscover passion within your current relationship. You may need to get creative with how you are having sex and pleasuring each other.

How to communicate effectively

This is the key to everything in life! So needless to say it is the key when you are in a relationship. Yet, it can be so difficult to communicate effectively.

Personally, I try to express, with compassion, what I am experiencing and being open to hearing their perspective. This will help open the dialogue about sex and intimacy.

It is so important to get comfortable talking about your ostomy, IBD or any chronic illness with your partner. If you’re not feeling sexy, desirable or if it’s painful to have sex then your partner needs to know. Likewise, your partner may be having difficulty accepting your new body and feel guilty about that.

Seek help if you need it. As an Ostomy/IBD Health Mentor I help people with many of the emotional issues that arise.

Check out this video clip from my talk on “Intimacy” at the Girls with Guts retreat last year.

Your partners perspective

It can also be really difficult for your partner to witness you go through so much pain.  It’s important to nurture your partner too. Ask them if they have questions about your ostomy or how things work. They might be feeling nervous and afraid. By opening the conversation you are helping them to voice how they are feeling and how they are dealing.

Sex

The act of sex includes sexual intercourse. But this may not be possible for everybody. Or you might discover that it feels very different depending on what surgery you have. It might be painful or you may not be able to have an erection or ejaculate. (See videos on Pelvic Floor Physical Therapy and Men’s Health with IBD or Ostomy).

If you are in your head and worried about what your partner thinks, or if you are embarrassed or self-conscious about how you look, then it will be really hard to let go and enjoy sex. Feelings of being inhibited need to be addressed. This is an area included in my ostomy and IBD programs.

Rekindling your relationship

Practicing patience and knowing you have to give your body time to heal. Your partner needs to know how you are feeling. If you are dating someone you need to explain to them what’s going on. It’ll either make or break a relationship. 

If sexual intercourse isn’t possible then get creative with other ways of pleasuring each other through oral sex, touching, kissing, cuddling, sex toys.

Logistics

Before sex I always empty the pouch. I’m not taking any chances! You will feel much better about things and your partner will be grateful too.

If a position doesn’t work for you then you have to let your partner know. Know your boundaries.

Take your time to get to know each other again, to become familiar with how your bodies work together now. Be patient with each other. And make it fun. Remember the more comfortable you are about your body, the more comfortable your partner will be.

If you are having a flare up, or going through cancer treatments then chances are you are not feeling sexy at all and a cuddle is all you can handle.

Intimacy

Intimacy requires really opening up more and letting someone see you for who you are. Being able to share you fears and worries, being vulnerable, honest and authentic.

Intimacy is different to the act of sex but when combined then it makes a really healthy relationship.

Intimacy creates sensitivity. When you are intimate you become sensitive to yourself and to others.

When to tell someone about your ostomy or illness

Each relationship is going to be different. It may also depend on how long you’ve had your ostomy or illness.

Personally I wouldn’t intend to tell someone on a first date that I have an ostomy but if the timing is right then I might.

Most importantly, is to honor how you are feeling. It’s all about what you are comfortable with. You want someone to form an opinion on your personality and not based around your ostomy or diagnosis.

Sometimes, just having an ostomy has been a great way to NOT have a one-night stand!

If you are having a one-night stand then tell the person beforehand. But try not to go into a feeling of rejection if they don’t want to proceed. They are probably doing you a favor in that case! (See video below on Overcoming rejection with Chronic Illness or Ostomy).

I’ve found that when I explain the events leading to my ostomy how ill I was and then there is more empathy and understanding of why I’ve an ostomy and all that I’ve endured.

Resources

Blog and video on Sexual Issues with an Ostomy has great information along with the https://elaineorourke.com/sexual-issues-with-an-ostomy-or-ibd/

UOAA has a sexuality guide which explains the types of surgeries, and how they affect sexual function and the emotional component as well.

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

By Ellyn Mantell

Welcome to my fantasy.

We all have our fantasies, so come along with me as I describe one of mine…new ostomates (those with ileostomy, colostomy or urostomy, all having had stoma surgery) would begin their adjustment to their new life with all of their questions answered, they would have knowledge and be welcomed into an Ostomy Support Group, they would have a connection with a Wound, Ostomy, and Continence Nurse (WOCN) and they would recognize what a gift, what a lifesaver an ostomy is.

My concern is that this is not the usual for ostomates, either new or even those who have them for many years. In New Jersey, particularly where I live, there are many resources available, and yet, even in our sophisticated arena, many ostomates leave the hospital uninformed and underserved. Prior to Covid-19, I visited patients in the hospital or in rehab facilities to answer their questions. I brought journals and pens so they could write their emotions, concerns, and observations, and refer back to their notes as they made progress. I am so anxious to return to that important undertaking as soon as it is safe to do so.

When I had my surgery in March of 2014, my surgeon told me I would be in the hospital for 5-7 days. However, I felt so well, so quickly, that I was able to leave 4 days later. That was pushing the envelope, but I was so used to recovering from abdominal surgeries, having had 22 before that, my ability to go into recovery mode was well-entrenched. The majority of patients need so much more time, and now, even 4 days is more than they are offered.

Back to my fantasy, and my pipe dream of a great transition for new ostomates:

How can questions be answered, and knowledge gained as needed? 

The majority of ostomies, even those performed in an emergent situation, require marking the abdomen for placement of the stoma (opening.) That is typically done by the Wound, Ostomy, and Continence Nurse (WOCN) and that is the person who comes to the patient’s room post-op to begin to prepare the ostomate for life at home. In an ideal world, the WOC nurse has written information to share, which once home, will make more sense, and provides contact information for any questions. Additionally, the ostomate is put in touch with the United Ostomy Associations of America to become part of a bigger group of kindred people.

How do we find Ostomy Support Groups in our area?

I am involved in three Support Groups, becoming president of one already formed when I had my ileostomy, and then worked with WOC nurses at two other hospitals in the area to form new ones. Until Covid hit, these were growing so nicely. But we are meeting virtually now, and staying as close as possible, knowing that the day will come when we are back together. It is wonderful to see “my people” who share my concerns, experiences and fears and accomplishments. We help each other in countless ways. People reach out to me through the WOC nurses in the area, United Ostomy Associations of America, The Phoenix Magazine, the American Cancer Society, three hospitals, and through word of mouth. Because I am so open and revealing about my ileostomy and Lily, my stoma, I believe my name pops into the minds of people when they know someone in need.

Ostomies are Lifesavers! “Read all about it!”

An ostomy provides the gift of health for many, many medical situations, including cancer, ulcerative colitis, Crohn’s disease, diverticulitis, motility issues and devastating organ injury. We live in good times for our supplies and the ability to try new and innovative appliances and accessories. The Phoenix Magazine is a great resource for all, and assists in wading through the confusion many feel. Motivational stories and practical guidance round out the offerings.

A final word about those we call our Angels…the Wound and Ostomy Nurses.

Establish a relationship with one, and if there is an Ostomy Clinic or Ostomy Center in your area, use it! These nurses are your connection to properly-fitting appliances, the correct supplies and accessories, questions and personal support, as well as the ability to refer to a Support Group. More and more are entering the private sector and providing services such as home visits, particularly to those who cannot travel to a clinic or office, and your surgeon may even have one in the office to help navigate the transition to life as an ostomate. We call our WOC nurses our Angels, and that is exactly what they are, ladies and gentlemen with big wings to support us!

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy