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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.

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.

Caring for a child with short bowel syndrome (SBS), a serious and chronic malabsorption disorder, can often feel isolating and disheartening.1, 2, 3 Unexpected barriers and challenges can make the condition difficult to manage and live with. And, because SBS is rare, finding information and support can be especially difficult. But for my daughter Mariah and me, this life with SBS is not about injustice, it’s about empowerment – a lesson Mariah has taught me better than anyone. As she puts it, “Mommy, I picked this life, and I picked you to be here to do it with me.”

Hearing those words years ago through the smile of my young daughter has been the ultimate source of strength for me. Mariah was born with most of her small bowel and half of her colon missing and was diagnosed with SBS at birth. She doesn’t receive nutrients as well as she should, which can lead to malnutrition, dehydration and other physiological complications. However, she was also born with incredible, innate resilience – that resilience has empowered me to break down walls and advocate fiercely on her behalf along our journey.

Finding strength has not always been easy. At the time of Mariah’s birth, the doctors said she would not live past one year. Essentially, I was told that my daughter had a death sentence. I did not accept that. But even though I didn’t doubt that she would survive her SBS diagnosis, I still grieved. Then, eventually I said to myself, “We will be the exception. We will be unique, and my child will thrive.” And, ultimately it was Mariah who created her own reality by not only surviving, but thriving. She simply shocked everyone.

Mariah is now ten years old, and she’s just like other kids in so many ways. For example, she certainly doesn’t like to clean her room! She is also her own wonderfully special person – she is a trickster who loves playing jokes on her brother and sister, and even kids around with nurses and staff during difficult hospital visits. She is equally nurturing and an avid caretaker of the sunflowers in our garden.

As Mariah gets older, I want to encourage her to become independent in every aspect of her life and to be curious about her SBS management. She already likes to gather her own supplies and has taken a particular interest in flushing out her own line (of her total parenteral nutrition [TPN]). Mariah doesn’t have the eating aversion that some kids with SBS might develop, so I allow her to eat whatever she wants and stock up her assigned “snack pantry” with what she chooses. Giving her the option to choose her own snacks is just one way that we’re building and supporting Mariah’s self-reliance in her SBS care and daily life.

This sense of independence helps Mariah feel like her true self because, as other parents of children with SBS likely know, the disease is not always pretty. That was especially true of Mariah’s experience following a surgical procedure known as an ileostomy. An ileostomy is a surgically created opening from the ileum, the lowest part of the small intestine. The intestine is brought through the abdominal wall to form a stoma. We agreed to do the ileostomy after she had been experiencing incredible pain when trying to use the bathroom. She would have acidic bowel moments and fissures – it was just awful.

The ileostomy was a temporary solution at best but was by no means perfect. We never had enough bags (or ileostomy pouches) and living with an ileostomy was challenging for us. At Mariah’s school, I would try to encourage curiosity and acceptance by telling the other kids that Mariah was an “alien from another planet” to explain her pouch. While a somewhat satisfactory explanation for most of the kids, she still experienced bullying from some of them. Thankfully, Mariah has always been confident in letting those bullies know that even if they weren’t being very nice, she would love them anyways. She punished them with kindness. It’s just another one of those things that makes her “Mariah”. Ultimately, Mariah was able to have the ileostomy reversed a few months ago which was a relief to us all.

In the moments of struggle that come with her SBS, Mariah has always responded with even greater moments of strength – sometimes even more strength than I possess myself. She has already had 40 surgeries in her first ten years of life, and on one occasion I decided to do her makeup with “winged” eyeliner before her procedure. However, when she came out of surgery, her makeup had been smeared. When she saw that I was crying, I told her the white lie that it was over the ruined eyeliner rather than let her see how hard it was watch her endure another challenge. Yet she was the one who said, with an unbothered smile, “Mom, stop! It’s not that serious, we’ll fix it later.” Her spirit is my strength, and that spirit inspires me to advocate fiercely for her every day.

In general, I feel there needs to be greater advocacy for the lives touched by SBS. It’s rare, and in my experience, there aren’t many people who can bridge the gap between parents’ understanding of the condition and the knowledge that medical professionals have. Although people living with SBS often have a circle of care that includes healthcare professionals across various disciplines, it can be difficult to merge everyone’s insights and get on the same page.

I have learned that to speak the same language as medical professionals, you must be invested and passionate about your research. For me, Google is my best friend. I research online to understand things like the vascular system and other biological processes. I read medical case studies online. I look at clinical studies. I constantly do my own fact-finding because I want to understand how a treatment will impact my child. The best way to do that is by arming myself with information as I fight to ensure she receives the care and treatment plans that are most appropriate for her. 

It can take time to find medical professionals who are comfortable when a parent says, “I respect your opinion, but I’ve done my research, as well, and we’re not going to do that; we’re going to do this instead.” I’ve learned that you can, in fact, get through brick walls. Although sometimes it’s by going over, around or under versus breaking through. And when medical professionals don’t think I’m at their level, I have no problem “putting on my heels” to get there so they hear me.

Although I am not a physician, I do have a PhD in Mariah – no one knows her better than I do. I know that when she has an infection, her eyes will turn bright green. When she’s going to have a fever, she sleep talks. I’m compelled to ask the deeper questions about why a doctor may believe a new treatment or procedure is necessary. This sometimes has forced us to switch providers because in my view, “protocols” are not personalized to Mariah’s needs. Every person with SBS has a unique experience.

We are ALL human, doctors included. And we can make mistakes, learn and grow. All the things that I didn’t know when Mariah was diagnosed with SBS have helped me remain teachable and earnest in advocating for her. I’ve learned so much more by recognizing what I don’t know. Being humble enough to take advice has given me the greatest defense.

Nevertheless, it is challenging to constantly find resources and support, especially as a single parent. Trying to make ends meet at home while managing Mariah’s SBS journey is an ongoing challenge. Even when reaching out to other parents in the SBS community, it can be difficult to find balance. But the biggest support I find is that I don’t feel alone. When I talk to other parents in the community about our experiences, they just get it. I don’t have to explain Mariah’s condition or worry I will feel crazy. I can just ask, “Do you experience this?” and they say, “Yes, we got you!”  Immediately, I feel less alone.

This journey takes strength and resilience, there is no doubt about it. Even with the support of the community and loved ones, ultimately, no one really knows what it takes for Mariah to be Mariah. They don’t know she has to carry a backpack for her nutrition. They don’t know what it looks like when I have to hold her for 15 minutes after her three daily shots. But they do see her strength, and they are compassionate towards the way Mariah knocks down every obstacle in her way, even those that would probably defeat others. I am humbled that this is our walk, and I believe it was given to us for a reason.

Just as the community encourages me and reminds me that I am not alone, I hope to encourage others in the community who may just be starting out on their SBS journey or struggling along the way. When talking to parents of newly diagnosed children, I want them to know that every child is unique, like a fingerprint. It’s all about believing that your child can do what they need to do. The most important thing is to know you’re doing the best for your child at every step of the way. This condition does not have to be a death sentence. And, if your child is anything like mine, he or she is likely stronger than you ever could have imagined.

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.

 

Don’t let an ostomy stop you from having some summer fun

By Annemarie Finn

When I received my bladder cancer diagnosis and the treatment plan, a radical cystectomy with an ileal conduit, I was devastated. Like so many, I went through many stages: Denial, Anger, Bargaining, Sadness and Depression, and finally, Acceptance. It felt like a double whammy. It seemed like the “cure” was worse than the disease. I would be forever changed. It was hard to wrap my brain around. It is one of the reasons I decided to write about my experience. I had no idea what to expect and did not know where to turn. I saw some videos of survivors with ileal conduits but, I did not relate with the speakers. They were 20-30 years older than I was. I really did not want to envision a life as an elderly person before it was time.

I can use a public restroom without having to sit on the gross toilet!

What would my quality of life be? I was terrified that life, as I knew it was over. Would I be able to work? What activities would I be able to do? What would I never do again? I had so many questions and fears.

So, what can I do now that I have a urostomy?

Honestly, I can do everything I could do before. When you first get out of surgery, you are hardly able to walk around your room. When you go home, the end of the driveway is a monumental trek. By persevering and trying to walk more everyday, I was able to go from measuring distance in feet to measuring in miles. Today, I try to walk 5-10 miles a day! I have hiked intermediate trails in the hills of Eastern Massachusetts. I have discovered miles of trails in my hometown that I didn’t even know existed. I am probably healthier than I was before I got sick.

Can you take a bath?

People often ask if you are able to bathe with a bag. It is very nerve wracking initially to expose your stoma. They are fairly active. I call my stoma, Squirt, when he (yes, it’s a he) acts up. He does spray urine. Picture a male toddler squirting. That’s what it’s like. We have no control over it. That’s why we wear a pouch.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way.

You can wear your urostomy bag in the shower. You do not need to cover it or keep it dry. It is a good idea to dry the skin around it with a hair dryer on low when you are done. You can even take your bag off and shower without it. I am over two years out from my surgery and that is how I prefer to do things on my change day. I change my bag every 3 days. I prepare all of my materials (bag, ring, barrier, paper towels, remover spray) then remove my bag. I then take a shower. I wash the skin around the stoma with just water or soap for sensitive skin. Just make sure you do not leave behind any lotion or any residue that would affect the barrier sticking to your skin. I keep paper towels ready to catch any drips when I am done and dry the skin with a hair dryer on the cool setting. I then just put on my prepared bag. I have some skin issues and find this helps with the itching and discomfort. It feels so good not to have the bag on for a while.

What about swimming?

I am a water rat. I can be in the water for hours, literally hours. It doesn’t matter if it is in the ocean, a lake, or a pool. I have done them all. Personally, it has not affected the amount of time I am able to wear a pouch. I am still able to go 3 days. I am able to swim, kayak, and paddleboard with my urostomy. I even just float. It has not interfered with my love of water at all. Even better, I can wear a regular bathing suit. I have worn tankinis for years, and not because of my urostomy. I no longer have a toned teenage body. I don’t even have a toned 30 something body. I like 2 piece tankinis as they hide a multitude of sins. After I got my urostomy, I decided to buy regular 2 piece bathing suits. Ironically, I am much more comfortable with my new imperfect body than I ever was before. My family laughs at me because, where I was self-conscious before, I now show off my body. Maybe it was having so many strangers looking at my most intimate body parts in the hospital or maybe I am proud of my battle scars. You cannot see my bag with my bathing suit on. It’s honestly no big deal.

There are so many other things I have been able to do since my urostomy. I ride my bike. I participated virtually in the Norton Cancer Institute Bike to Beat Cancer, a 35 mile bike ride. I did it in steps but I gave myself a pass since it was only months after my surgery. I garden, do yard work, spread mulch, work, travel, you name it. As you can see, it has not limited me in any way. Because of my urostomy and thanks to my night bag, I can sleep through the night without having to get up to use the bathroom. That means I can drink up until I go to bed! I can sit through long car rides and movies with said night bag. I can use a public restroom without having to sit on the gross toilet! I can write my name in the snow!!! That is not conjecture, I actually did it. My sex life is good. I am planning a European vacation. Both of those will be the topics of future blogs.

What about what I can’t do

The list of what I can do is long. What about what I can’t do. I can’t pee like I used to. I am careful about lifting. I had a hysterectomy with my radical cystectomy so no more children for me. Since I was in my late 50s when I had my surgery, it’s not really an issue but, I am trying to be honest here. That is something to consider if you are younger. Definitely talk to your doctor if you want children. I can’t play the piano, but I couldn’t before. That’s about it.

As you can see, a urostomy after a radical cystectomy is a life changer, but in a good way. You can still do what you did before and even try new things. Even better, it is a life saver. Go out and live your best life. That’s what I am doing.

 

 

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

In celebration of Wound, Ostomy, and Continence (WOC) Nurse Week 2021, help us to shine a bright light on these special nurses. They give us the hope, support, and specialized care needed to thrive in life with an ostomy.

WOC nurse volunteers spend countless hours advocating, leading support groups, educating, fundraising, and supporting UOAA programs and services. UOAA recognizes that not all ostomy patients have access to a WOC nurse and we’ll continue to advocate for access to a specialized ostomy nurse from preoperatively when your stoma site is marked through an ongoing lifetime continuum of care as outlined in our Ostomy and Continent Diversion Patient Bill of Rights.

We asked UOAA’s social media community to share how a WOC nurse has made a difference in your life, health, or support group. We hope more nurses will consider this rewarding specialty. Thank you WOC nurses, you are our guiding lights.

I would like to thank my WOC nurses who have and continue to support me as an ostomate. My nurses inspired me so much I went to nursing school and graduate this month with a BSN and plan on continuing on. To become a WOC nurse myself! Thank you WOC nurses! -Katie Lee

“My WOC was a lady named Gayle. She helped my Mom so much with me. I remember many visits to the ER ward and having her there. She was funny, nice and on it. I used to love seeing her. She stayed by my side from 3-6yr old into my adulthood. She fought hard to find a bag that was the perfect fit for me. She got a new product in and it changed my life significantly, she fought tooth and nail to keep me in that bag, even when Canada decided to stop offering it openly. I still wear that brand to this day. I always heard rumors she was also an Ostomate and I can’t say how long. That made me love her more. I will never forget those who had a hand in my welfare and saw me through their entire career. I miss her and the others immensely. Jody is my new WOC and although I rarely need her, she’s there to help, even if it’s a panic situation that couldn’t wait for an appointment.” –Camille C.

“Joanna Burgess Happy WOC Nurse week. You have been a true Angel of Mercy for me over the years!” –Col Justin Blum

“My son’s WOC nurses at CHLA were awesome!!” – Teri C.

I am a WOCN and worked with MANY ostomy patients in the past. The thanks go both ways — I have never (in a long nursing career) felt as appreciated for my clinical skills and assistance as I do when working with people with an ostomy. They are the reason I have stayed in nursing. -Cris R.

This is Karen with my husband at his 55th birthday party in 2019 -Pam Allen Williamson

We have 3 great WOC nurses in our community that come to our ostomy support meetings Karen Eubank, Michael Byars and Jason Pratt. Michael went above and beyond by creating a weekly outpatient ostomy clinic after I told him I learned some cities had those while attending a UOAA conference. Karen who has been coming to our meetings for over a decade, hosts many of our support group parties at her house, works at the ostomy clinic on a regular basis, pays to store donated supplies and often helps people after hours. Both of them visit my husband when he is hospitalized, came to the house to visit him when he was home on hospice and came to his funeral. We are extra grateful to Karen because before he left the hospital on hospice she applied a special high output bag connected to bed drainage bag to minimize the family’s need to interact with the ostomy. Karen who is a neighbor told me that she would come change the bag twice a week. The hospice nurse was fascinated and stayed late to watch Karen change it out. He was going to stay in the hospital as long as they would let him to avoid family having to deal with his bag because he had always been so independent with it until nearly the end. Karen’s solution allowed him to come home and be surrounded by family caregivers that loved him and have wonderful conversations remembering fun times and having important conversations instead of the visitor limitations hospitals right now. We are so grateful to her for this and hope it will benefit other families of bed-bound patients. BTW we still fondly remember my husband’s first WOCN Nurse Licklighter who was a nurse at Keesler AFB in 1993. She marked him before surgery and taught him how to handle his bag and he kept her handwritten instructions forever and sometimes copied them for others. -Pam A.W.

I can’t thank the nurses at Ohio Health Riverside Hospital they helped me so much and made an otherwise difficult transition quite non traumatic! –Carol B.

Thank you to Erin and Vanessa at New York Presbyterian! –Jameson Cycz

The ConvaTec nurse Lorelei. She has been a stoma saver. She helped me troubleshoot my leaking problem, got me into a new pouching system, that is awesome and when I ran out of samples and am in limbo with my supply company in getting the new pouches and other supplies, she set me up with a holdover supply, so that my stoma won’t be continuously injured by my current pouches.- Susan Gentner

I’m thankful for all of the WOCNs I have been to. Some I’ve known for many years. They are very knowledgeable and helpful with various products.I also want to give a shoutout to our great WOCNs at 11 Health & Technologies for being amazing for our team and patients. 💜 –Megan Alloway

Amazing Aimee Frisch. The best WOCN in know. Love you. -John Pederson

Happy ‪#WOCNurseWeek2021! What you do for ostomy patients and the impact you make is immeasurable!  Plus we are grateful for all that you do to support UOAA and our advocacy program! You are advocates for patients and can influence change. Shine on! @UOAA_Advocate -Jeanine Gleba

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.

When Paige started seventh grade, she was excited to meet new friends and begin new classes, like most 12-year olds! Her life quickly changed when she began to experience medical complications. At the beginning of seventh grade, Paige started having to make frequent visits to the bathroom, as much as 12 times a day. Paige and her family sought out answers and treatment at a nearby hospital where the doctors found a parasite in her colon called cryptosporidium, which causes diarrheal disease.

Due to her Ulcerative Colitis diagnosis at the age of 10, the parasite was life-changing for Paige, as it destroyed her colon. “They told me that with how bad my colon was, I should have died.”

Paige went through a variety of treatments to save her colon. This started with receiving Remicade as an IV treatment…Paige’s body did not respond well. The next step in treatment was to try a j-pouch, again her body did not respond well to this treatment, but a j-pouch was tried one more time with the same outcome. After her two failed j-pouch operations, Paige continued to be sick and only had 8 feet of intestines left. Her mother, Cristy, discussed with her doctors to do something different since the j-pouch was not working, and that’s when Paige had surgery to receive a permanent ileostomy. After months of hospital stays, her life was saved with her ostomy. Paige’s journey doesn’t stop there. After being discharged from the hospital, Paige had trouble finding a pouching system that helped provide a secure fit to her body.

“We left the hospital with an ostomy pouching system that had a 12-hour wear time, at best,” says Cristy. “I went mama mode and searched for a better product. Luckily, we found a great gal on the other end of the Coloplast® Care phone line who answered all our questions and gave us just that!,” she said.
Once Paige found a pouching system that worked for her and started to gain her confidence back, she saw the need to create more resources for teenagers living with an ostomy, because there wasn’t much out there!

“I play volleyball, I go to camps that are just like me (Youth Rally), I attend high school dances, I go on dates…I do it all! Coloplast helped me find the best fit for my body. They may be able to help you too. I have used Coloplast for 4 years now and I still feel confident in my pouch.”
According to Paige, living with her ostomy is not always easy. Along with the physical challenges, there are mental challenges from her experiences as well. Paige encourages anyone experiencing mental challenges to speak up and find someone to talk with.

To help other teenagers living with an ostomy, Paige and Cristy contacted Coloplast, and they partnered together to create a care guide specifically for teenagers!

Throughout this booklet, Paige hopes to share the tips and tricks that worked for her as well and provide answers to common questions.

Download a free copy of this teen resource here: https://www.coloplast.us/landing-pages/teen-booklet/

*Paige 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.

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.

Michael Seres started 11 Health as a direct result of his experiences as an ostomate. He had suffered with Crohn’s disease for over 30 years and after a small bowel transplant, he needed an ostomy. He felt alone and powerless. The bags were hard for him to get used to and they did not help to manage his condition – they just collected output. He started blogging and tweeting about his journey and found tens of thousands of patients who felt the same way but were too anxious or disempowered to do anything about it. Michael made a commitment that he would devote his life to making a difference for these patients.

Despite his health struggles, which included fighting and beating cancer multiple times, he found the strength to start a healthcare company that shares his single-minded focus of helping patients, and in particular ostomates. The company is called 11 Health as Michael was the 11th person in the UK to have had the pioneering transplant procedure. Only a few of the 10 that went before him survived the procedure. Michael did not just survive, he thrived and accomplished so much in his short life.

Advocacy was always a part of Michael’s life. He always found time to prioritize it amidst the challenges of running an international business and managing his health. In his talk at Stanford Medicine X in 2017, he talked about a revolutionary idea of using social media for doctor-patient communications. Michael believed that patients were the most underutilized resource in healthcare and he spoke beautifully about it in his famous TEDx Talk in 2018. The need for the patient to be at the center of patient care ran through his core. He felt that patients should not be passive end users. Instead, patients should be engaged in medical decision making and empowered by education and self-care tools. Michael’s reach was spread wide and he advocated for patients to the leadership of Google and even on a panel alongside Bill Clinton.

We lost Michael last year. Whilst our hearts are still filled with sadness, we are more determined than ever to deliver his vision of changing healthcare and making it patient centric.  He believed passionately in the ‘everyone included’ philosophy. A movement for change supported by doctors, nurses, policy makers but most importantly, patients. Making that change will be Michael’s legacy.

We are creating a special birthday Gutsy Gathering on March 23 from 3-7pm EST in Michael’s memory. It will not be a day to mourn. It will be a day to celebrate the achievements of an extraordinary man by inviting some equally extraordinary people to talk about their personal or professional involvement in the patient experience. Sessions will focus on themes relating to advocacy, confidence, community, and change.

The Michael Seres birthday Gutsy Gathering will be an annual event and an opportunity for friends to meet in a face-to-face setting. This year it will be virtual, with speakers joining us from around the world from across the ‘everyone included’ spectrum. The live sessions will run from 3-7pm EST and participants can come and go as their schedules allow. The event is free, and registration is required at www.gutsygathering.com. Our esteemed list of speakers continues to grow and can be found on the registration page. Please join us!

 

Editor’s note: This article is from one of our digital sponsors, 11 Health. 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 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.