Your Ostomy is Just the Beginning

, , ,

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.

Vernon Payne’s Story

, , ,

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.

Teen Life with an Ostomy

, , , ,

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.

Allison Rosen’s Story: Me, Myself and Fill

, , , , , ,

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.

Read more

Angie’s Story: Going Public about Her Ostomy After 38 Years

, , , , , ,

Embracing Ostomy Advocacy and Giving Back

 

By Angie Davenport

I’ve had my ileostomy for 38 years due to ulcerative colitis but I only recently went public to encourage other ostomates.  Over the years I’ve helped many individuals by word of mouth while keeping my ileostomy private to the outside world. I have always wanted to be a blessing on a wider scope though to others with ostomies.

I was first diagnosed with ulcerative colitis in 1980 when I was three months pregnant.  At first, I thought it was pregnancy symptoms.  After a major episode, I was treated with medication for ulcerative colitis.  My son, James was born a few weeks early due to complications.

After the birth of my son in March of 1981, everything was under control and I eventually relocated from Warren, Ohio to Atlanta, Georgia.  While living in Atlanta I had a major setback with ulcerative colitis and I had to fly back to Ohio immediately and went directly to the hospital.

After several weeks of treatments in the hospital, my doctor came into my hospital room one night and said we have to do surgery or you won’t make it 24 hours.  I’ll never forget my mom crying and praying for God to give her my disease so I could have a normal life.

When I received my permanent ileostomy in March of 1982 I was a young 23-year-old single mom.  It was the day before my son’s first birthday.  I had never heard of an ostomy.  When I woke up in ICU I was devastated, ashamed and frightened.  I thought my life was over.

Once I became strong enough physically and mentally I moved back to Atlanta.  I was still feeling ashamed and frustrated until my physician in Georgia recommended I attend the local United Ostomy Association (the precursor to UOAA) support group.

While living in Atlanta I became very involved with the UOA group and completed the visitor training program.  I enjoyed visiting new ostomates at the hospital. I felt the freedom to be involved because no one really knew me in Atlanta. I remained active until I relocated back to Ohio in 1985.  That same year I married my high school sweetheart and we will celebrate 36 years of marriage in November.

Although I was very private about my ostomy I was very successful in my career. I became the first African American female officer at our local bank and functioned in several positions without the exposure of my ileostomy.  After the downsizing of my employer, I later worked 10 years at Great Lake Cheese until retiring in 2016.

What is my purpose in life?  How can I make my mom proud?

I’ve enjoyed my life as an ostomate.  I love traveling, cruising and shopping.  I was known in the business community as a person that loved to dress. I taught Dress for Success at the bank for all new tellers.

The past few years were filled with so much grief, with the most current being the death of my mom on July 4th 2019, only three days after my 60th birthday.  I was feeling the deep void of losing a brother and both parents within 4 years, depression was setting in.  I had support but I felt helpless and lost.  What is my purpose in life?  How can I make my mom proud?

Most will remember 2020 as a horrific year with so much sickness, death and devastation from a deadly pandemic.  For me, I utilized the time to seriously seek God for a purpose in my life and being quarantined turned out to be a blessing in helping me find my purpose.

I knew my testimony would bring awareness and hope to so many people.

I became more involved via social media with other ostomates.  I’ve met some wonderful friends and it became rewarding to encourage others that had shared similar experiences as me.  My heart was really saddened when I read an article about a young man that had gone to court for the right to die because he didn’t want to live with an ostomy.  I wept.  Also seeing how some individuals can’t afford the basic ostomy supplies and had to use grocery store bags and tape to secure their ostomy bags was heartbreaking.  I knew then, that there was so much more I could do for the ostomy community.  I knew my testimony would bring awareness and hope to so many people.

As a member of Jearlean Taylor’s Ostomy Stylzz Facebook Group I participated in a virtual fashion show.  She is a personal inspiration to me and that show boosted my confidence to a much greater level.  I felt a relief to go public.  I chose August 14th, 2020 to go live on Facebook and share my story.  I felt such freedom once I finished.  There were family members, coworkers, church and community friends that responded and supported me in disbelief.  For the past 38 years, they never knew I had an ostomy.

One family friend messaged me and told me that he was scheduled for surgery but has canceled many times, but because of my video he felt he could now go through it.  I still check on him to make sure he’s not having any problems.  That made going public all worth it.  But what else could I do?

I decided to participate in the Run for Resilience Ostomy 5K.  I registered over 20 walkers to participate virtually in several cities and I exceeded my fundraising goal by almost 100%.  The highlight of the day was my local mayor stopping by to present me with a proclamation from the City of Warren in support of ostomy awareness. Our local newspaper also highlighted the event.

…because of my video he felt he could now go through it.

After posting my Ostomy Awareness Day photos and story on Facebook I was contacted by so many family and friends willing to support me in the future.

With the pandemic still active, I’ve been limited in getting out in the public but I do try to make an effort to encourage other ostomates daily.  I’ve connected with my local Affiliated Support Group leader and I’m looking forward to greater things once we can meet publicly.

On, March 6, 2021 I will be a 39-year ostomate.

I’m on Facebook and I have a Youtube video discussing my ostomy journey.

I’m free, living with my ostomy!

 

Kara O’Neil’s Story

, , , ,

Discovering Strength in the Struggle from J-Pouch to a Permanent Ostomy

If you asked me 20 years ago when I was in college if I thought I could be a strong ostomate, I would have just stared at you in shock. Strength and I were not the best of friends. In fact, it was one of the things I often questioned about myself. I had no idea what was something worth crying about.

That all changed three years ago when I was put to the test when I went from sudden rectal bleeding as a result of ulcerative colitis, to having to remove my colon in a matter of four months. During the next three years, I had four more operations from trying the j-pouch and failing, to finally getting a permanent ostomy just this past December.

Somewhere along the way, I found my strength.  I dealt with major emotional and physical changes faster than I could even process.  I had to adapt to a whole new way of life and a whole new way of looking at myself.

Somewhere along the way, I found my strength.

These three years have been incredibly hard. They have tested me in every way, broken me down to smithereens of myself, and caused me to question everything. The true strength that just suddenly overcomes you when you least expect it is something you don’t really understand until you are there and have no other choice. Life after that is forever changed.

Along the way, I started to feel strong. I was amazed by what both my body and my mind could accept and turn into a positive. I started to really take care of my physical health, and in the three years that I have been the sickest in my life, I became the most physically strong I have ever been by participating religiously in barre class. This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I literally stared death in the eye and won.  It is hard to even write that today.

Feeling very alone, I stumbled across some ostomy bloggers one night while scouring the internet.  Reading their patient stories blew my mind at the time, because I didn’t comprehend how they could just accept living with an ostomy.  But all that changed and I began to understand when I was so sick that it was no longer a choice if I wanted to keep being a mommy.  The decision to have a permanent ileostomy was the best choice I ever made.

This physical strength, along with the help of the ostomy community, is what helped me to then discover my mental strength.

I just had what I hope to be my final surgery and got my permanent ostomy on December 1, 2020. Since then, I have made some promises to myself. I want to be my absolute best version of myself now that I am able to really live again.  I want to help as many people with IBD and facing the possibility of an ostomy as I can.  I want them to see what I have come to see, that they too can use such an incredibly difficult period in their life to find their strength and their best version of themselves.

“God said to me, I am going to show you pain.  And then you are going to help other people who are in pain because you understand it” (Lady Gaga).

 

Charlotte’s Ostomy Story

, , ,

 

Outdoor Adventure Does Not Stop with an Ostomy and IBD.

Hi my name’s Charlotte!

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

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

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

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

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

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