Collin’s Story

When I was diagnosed with UC, I was 21 years old, heading into my final year at UC Berkeley and I loved to run! I had just finished my best season of competition ever (clocking personal bests in every event from the 1500m up to the 5-K, winning the Pac-12 steeplechase title (the steeplechase is an obstacle course and during the course of the race you must clear 28 ordinary barriers and seven water jumps. It takes the strength and agility of a gymnast and the power of a sprinter) and earning second-team All-Pac-12 and All-West Region honors in cross country. My entire identity was centered around the sport that I loved.

What was your biggest fear?

My biggest fear is that I would never be able to run competitively again and that was the heart of who I was. Getting sick and having a serious surgery made me question if it would ever be possible to do again.

Was there something you were worried you would not be able to do after your ostomy surgery?

Run and compete in the sport I loved. My doctors and nurses assured me that people who had ostomies could be active again, but I doubted they understood what I meant when I said I was an athlete. I was very worried about hernias and my body’s ability to stay hydrated during competition.

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?

My fears, while valid, ultimately did not come true. While I haven’t returned to the same level of competitiveness that I reached in college, I have been completely free to live my life the way I choose. I’ve run the Boston Marathon, and even set a personal best in the half marathon distance as well!

How has your ostomy changed you?

After going through everything that I did, my perspective has completely changed. The reasons I put on my running shoes each day and line up for races now comes from a place of deep appreciation and gratefulness, where before it was entirely a competitive endeavor. I’ve come to realize just how lucky I’ve been to have the opportunities that I’ve had, both in my running career and life in general. In a strange sort of way, getting sick was one of the best things that could ever have happened to me.

What helped you most during your recovery?

First and foremost, the support of my friends and family. I struggled with depression while I was sick, and it took a long time after surgery for me to get through that time in my life. I had lost a part of myself during that time, and it wasn’t easy filling that hole back up. If it weren’t for the consistent positivity and support of the people around me, I’m not sure where I’d be.

Did something help prepare you for your operation? If so, what was it?

Given the circumstances of my illness, I didn’t have much time to prepare. I just remember thinking that I was glad there was finally something else I could do to relieve the constant pain.

What do you wish someone had told you before your ostomy operation?

I’d been told by a couple people throughout the process, but I wish someone had pressed harder for me to talk to a therapist while I was sick and depressed. I think I made things much harder on myself than they needed to be because I was stubborn.

Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank? (Name/hospital, city, state)

Dr. Finlayson of UCSF performed my surgery and did a great job. I’ve had very few (if any) issues in the 5 years that I’ve had an ostomy.

Molly’s Story

Briefly share your illness journey, what was the diagnosis, how long were you ill, and was the decision to have ostomy surgery yours or was there an emergency operation?

When I was 11 years old, I was misdiagnosed as being lactose intolerant. I underwent a colonoscopy to finally get some answers, only to end up with a perforation and told I had Crohn’s Disease. I was rushed into an emergency laparoscopic surgery. It didn’t fully correct the problem, so I went into surgery again. I woke up with an ostomy and was NOT happy. I began to accept my ostomy because it was giving me a better quality of life, but I still hated it. I remember crying in my bed and to my mom because it was such a big change in my life; especially since I was only 11 years old. I wanted to play, run and be active during summer time, but was told to do only the opposite. I couldn’t run, jump or play since I was still recovering.

When I started fifth grade I was told I could get my ostomy reversed. So, I underwent surgery yet again, but this time was more exciting since I thought I was finally going to be “normal” again.
I was living life and doing well up until the summer after my sophomore year of high school. My medication to put my Crohn’s into remission did not work anymore. My doctors took me off that medication, but I went a whole month without being on anything to control this awful disease. My disease, therefore, got ahead of me. At age of 16, I made the courageous decision to undergo another ostomy surgery. I wanted my quality of life back. I didn’t care about boyfriends or what my friends would say as long as I was able to go out in public and not have to worry about finding a bathroom. I am 18 now and have not regretted my decision to get my ostomy back. I have enjoyed being active, taking school trips, playing sports normally, and even attending school dances with zero worry about where a bathroom is. An ostomy might not be the sexiest medical device out there, but sure is a miraculous one. Thanks to my ostomy I now have my strength and quality of life back.

What was your biggest fear?

Not being able to be liked by a guy due to my ostomy.

Was there something you were worried you would not be able to do after your ostomy surgery?

Play softball and wear tight-fitted clothing.

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?

I was relieved when I found a solution to wearing tight clothing and having an ostomy. Honestly, just asking nurses post operation you find out many tips and tricks.

How has your ostomy changed you?

I am now myself again. I’m back at a healthy weight, have less to stress about health-wise, can eat whatever I want, and can go on with my life.

What helped you most during your recovery?

My family. Having a support system that is there for you 24/7 helps a lot. It’s not just physical pain and soreness you go through after ostomy surgery. You also go through a lot of emotional stress and anxiety because it is such a big change, especially if this is the first time anyone in your family has had to deal with this.

Did something help prepare you for your operation? If so, what was it?

I used to talk to a therapist when I was really sick. She helped me through some depression and anxiety due to being so afraid of going out in public because of my disease. She helped my come to realize that this was the best option for me and my quality of life. Also, my parents motivated me and put a good image in my head about what my life was going to be like after my operation, and in the end they were right.

Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank?

I would like to thank the Rochester Gastroenterology department for their amazing care and support throughout my journey. Specifically, to Dr. William Faubion for being there for, not only me, but also my family through good and bad times with my health.

Dennis’s Story

Briefly share your illness journey, what was the diagnosis, how long were you ill, and was the decision to have ostomy surgery yours or was there an emergency operation?

In 2000 I had colon surgery after a colonoscopy, my very first one, revealed a cancerous lesion in my colon. A resection was done and after a chemo series I returned to my normal life for 14 years. I became worn down in May 2014 and totally exhausted by caring for my wife who had been diagnosed with Alzheimer’s. Irregular bowel movements began, and I contacted my gastro doctor and explained the changes that occurred mainly when riding my road bike on long rides to maintain fitness. A colonoscopy revealed cancer again, surprising both my oncologist and surgeon after 14 years of clear exams.

What was your biggest fear?

When the colonoscopy showed the area affected was near the rectum and that I might be looking at a colostomy this time, of course this concerned me. I spoke to the surgeon and read things on the internet about the procedure and its effects on life in general.

Was there something you were worried you would not be able to do after your ostomy surgery?

I knew it was going to present new challenges but being a fighter pilot during the war in Vietnam, and the cold war before that, I knew it was surmountable with support and education, so I was confident, perhaps naively. I have always been very active and rode my road bike 25 miles on each outing, sometimes more, and completed an annual 50-mile ride since the mid-eighties. I read about others backpacking, riding and skiing with ostomies so assumed I could continue.

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?

I found confidence in being able to continue riding, starting with low mileages and building my stamina again. I logged every mile and my goal was to log 2,000 miles per year in order to maintain my robust health so I could continue caring for my wife every day, even though I had moved her to a care facility so that I could get adequate rest at night. I am proud to say that despite my age of 80, I have logged 2,000 miles each year for these past four years and going on five.

How has your ostomy changed you?

My wife passed away this past August after 58 years of a wonderful marriage. It has been difficult for me losing my sweetheart and living alone but going to the gym twice a week and continuing my riding gives me peace during these stressful times in life.

What helped you most during your recovery?

Physical activity showed me nothing had really changed except my method of going to the bathroom. That has become so routine changing the appliances that I find some definite advantages over the normal way and it eliminated those urges that made me look for a restroom along the routes I ride.

Did something help prepare you for your operation? If so, what was it?

My initial WOCN nurse taught me that this new procedure was quick and “a piece of cake” and that my skill in changing the pouches would be so painless and quick. My first colon surgery taught me that attitude was everything and my wife’s support was invaluable.

What do you wish someone had told you before your ostomy operation?

I wish someone would have told me all the fantastic advantages like, no more dirty toilet seats or, uncontrollable urges while exercising

Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank?

The WOC nurse that showed me that this was going to be easy, just different was Marilyn Donan, RN. She was my home visiting nurse right after surgery here in Orange County, CA. Dr. Coutsaftides (retired) from St. Joeseph’s Hospital in the city of Orange, CA was my surgeon both times and I had complete confidence in his remarkable skill and assurance.

Loryn’s Story

I started feeling sick when I was 16 and suffered from terrible cramps, diarrhea, nausea, anemia, and tiredness all the time. it took many grueling tests and different doctors to figure out what was wrong with me. Finally, I was diagnosed with Crohn’s disease. I was ill for many years and it wasn’t until I was 29 years old that I was rushed in for emergency ileostomy surgery.

What was your biggest fear?

I was newly engaged and worried about how I would feel and look afterwards and wondered if my fiancé would still want me.

Was there something you were worried you would not be able to do after your ostomy surgery?

I was afraid I was not going to have a “normal” life and be able to have children.

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?

Those fears never became a reality because I had a future hubby that said he would love me just the way I am. He loved me for me. In fact, our wedding song, which he selected, was by Billy Joel and the lyrics say, “I love you just the way you are.”  Three years after we married I was able to get pregnant and had a son who is now 30 years old. And three years later I had a daughter who is now 27. Both of my children are healthy and happy.

How has your ostomy changed you?

For the better. I appreciate life and all I can do and never let anything stop me.

What helped you most during your recovery?

My husband’s caring words and actions. My parents ongoing quest to find out what could be done to help me heal and the UOAA’s great support systems, one of which included a “visiting” program where I met other ostomates who shared their stories and taught me how to live successfully with my ostomy.

Did something help prepare you for your operation?  If so, what was it?

My doctors were enormously helpful at the time and my Mom did a tremendous amount of research and shared her findings with me.

What do you wish someone had told you before your ostomy operation?

That I would have the life I have today — being well almost 100% of the time. That I would lead a normal life and that the ostomy would become a part of me that I would truly love as much as the rest of my body.

Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank?

Dr. Philip Moskowitz and Dr. Arnold Koopersmith, South Nassau Community Hospital, Oceanside, New York.

Daniel’s Story

I retired from the Navy in 2003 after a 22-year career. In May 2012, at 51 years of age, I underwent my first, and only colonoscopy, at VA Medical Center, Hawaii. Leading up to my colonoscopy I considered myself to be in good health and had no signs of any medical problems. The results revealed 100 polyps and based on these findings I was referred to Tripler Army Medical Center, Hawaii, for genetic counseling. DNA testing revealed Adenomatous Polyposis Coli (APC), confirming the diagnosis of Attenuated Adenomatous Polyposis (AFAP).  (AFAP is known to be due to an autosomal dominant germline mutation. It as a later onset, between 50-55 years of age.) There is no cure and it is estimated to affect <0.03% of the global population.

As a result of this diagnosis I underwent a total-proctocolectomy w/ ileostomy surgery in July 2012.

What was your biggest fear?

I had no fear of the diagnosis, surgery and living w/ this condition. The way I see it in life we have two choices: one can React or Respond. I chose to respond by preparing myself for this journey once diagnosed w/ AFAP and undergoing ostomy surgery. As a result, I embraced my condition from the onset. My mindset was and continues to be not to think of things I’m unable to control, such as a medical diagnosis. What I can control is my positive ATTITUDE and after five decades on God’s green earth my positive ATTITUDE brought me this far. Along w/ my positive ATTITUDE I’m anchored by my strong FAITH which to me means having hope that everything will be alright. Shortly after my diagnosis I created this acronym: Full Assurance Influenced Through Hope (FAITH).

Was there something you were worried you would not be able to do after your ostomy surgery?

My other mindset is: worrying wasn’t the cause of my condition. Therefore, worrying will not make it go away.  During my military career I was equipped to Adapt, Improvise and Overcome and after I was diagnosed, I read many articles about the gene mutation, type of surgery and life as an ostomate. I was incredibly touched shortly after my surgery as I was reading about Rolf Benirschke’s diagnosis, surgery and life as an ostomate. His, Alive & Kicking, theme hit home with me on so many levels.

You see, in 1982 while on active duty in the Navy, I was stationed in San Diego. I can recall the excitement of Rolf’s successful second chance when he kicked a field goal in the game against the Miami Dolphins. The Chargers won when Rolf kicked a 29-yard field goal in overtime that put them into the AFC championship game. In August 1982, I attended a Chargers preseason game. Little did I know the impact those memorable moments would have in my life until now. As an ostomate I’m thankful to have a second chance as I go about my life sharing my journey.

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?

Based on my personal research I had no fears or need to worry. Therefore, fears did not become my reality. I had complete trust in my medical team that I could resume life as an ostomate w/minimal changes in my new lifestyle. My focus was on overcoming adversity since I considered myself to be very resilient.

I created an acronym for ADAPT: Attitude Determines the Ability for a Positive Transformation.

How has your ostomy changed you?

It has changed me on many levels which was the impetus that launched my advocacy efforts for my rare gene mutation, colon cancer and ostomy awareness. During my military career I had the honor of being an ambassador for the USA as I traveled the world on active duty. Now I’m honored to be an ambassador for the ostomy community, locally and abroad. I’ve had the opportunity to write an article for the Phoenix Magazine; Ostomy Canada Society Magazine as well as several ostomy, rare disease and colon cancer organizations. I’ve also been a “live case presentation” for several medical groups.

I’m in my element when talking about my rare gene mutation, being an ostomate and a colon cancer warrior. AFAP was discovered by Dr. Henry T. Lynch in 1992. He is the founding father of hereditary colon cancer research. After my surgery I had the honor to meet Dr. Lynch when he traveled to Hawaii. We stay in contact as my gene mutation requires annual surveillance of my stomach, small intestine, and eyes.

What helped you most during your recovery?

I continued to read about my condition and reached out to numerous ostomy related online resources. This allowed me the opportunity to better prepare myself for life with an ostomy and rare gene mutation. Sharing my journey was also important to me. My personal research efforts led me to contact United Ostomy Associations of America; Colon Cancer Alliance; National Organization for Rare Disorders; John Hopkins Hospital Hereditary Cancer Society, among other organizations for my advocacy efforts.

Did something help prepare you for your operation? If so, what was it?

My positive ATTITUDE, strong FAITH and ability to ADAPT to my life’s experiences has helped me in overcoming adversity. Also, my medical team at both the VA Medical Center and Tripler Army Medical Center were a wonderful source of support and encouragement.

Additionally, I often reflect on the phrase that’s been said we’re unable to control the wind. What we can do is adjust our sails. After 22 years in the Navy I’m good at adjusting.

What do you wish someone had told you before your ostomy operation?

Leading up to the surgery, my medical team provided many answers to my questions, such as physical and food limitations. This combined with my personal research efforts lead me to believe I was prepared for the surgery.

Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank?

I’d like to send a special shout out to Dr. Fernando Ona, GI Clinic, Spark M. Matsunoga VA Medical Center, Hawaii; Chief of Surgery, Dr. Ian Freeman; Certified Genetic Counselor, Susan Donlan; CRC Surgeon, Dr. Ronald Gagliano and WOCN, Nina Lum of Tripler Army Medical Center, Hawaii. They all came alongside me during my diagnosis, leading up to and after this life saving surgery. They encouraged me to read about my condition and life as an ostomate. For that, I’m forever grateful.

Always Forge Ahead with a Purpose!

Nicole’s Story

As a child I had chronic constipation and extreme abdominal pains.  In my twenties, I was diagnosed with Colonic Inertia and was told that I needed ostomy surgery. At that time, I declined surgery because I was scared of that option.  I continued to deal with the pain, bloating, harsh bowel regimens that would finally work at the worst times.  In my forties after three ER visits in 6 months and a 3rd doctor’s opinion, I realized it wasn’t if I was going to have surgery, it was when.

What was your biggest fear?

That I would never again be able to give 100% to my children and my husband and that I could never feel comfortable to give big hugs to friends and loved ones again.

Was there something you were worried you would not be able to do after your ostomy surgery?

Swimming and long walks.

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?

The ostomy surgery gave me my life back.  Prior to the surgery, I didn’t realize how I had withdrawn from activities in order to hide my problem.  I am extremely grateful that I get to enjoy life now without pain and my ostomy surgery has never held me back.  Nine months after my surgery, my family and I went to Disney World and I remember sitting and laughing to myself because I was waiting for others to use the restrooms.  I sat on the bench and smiled, it was a feeling that I was not going to forget.  I can swim and walk and enjoy these activities to their fullest.  Hugs were never taken away from me.  I enjoy them every day from my family and friends.  When I meet a person with a new ostomy, I was always offer a hug.  I think we all appreciate being loved unconditionally.

How has your ostomy changed you?

My ostomy has given me freedom and the power to enjoy both the present and the future.  I love to educate health care workers on understanding ostomy surgeries, but more importantly on how to provide dignity and respect when caring for others.

What helped you most during your recovery?

My husband’s love and support as he was by my side each step of the way.  My surgeon Dr. Richard Greenberg’s walking beside me in the hospital hallway 12 days after my surgery to help me through an ileus and other complications.  Rolf Benirschkes’ phone call to my husband while I was going through blood transfusions and remembering Rolf’s words of inspiration.  Terre, my friend who inspires me to be my best and who is there for me through both good and difficult times.

Did something help prepare you for your operation?  If so, what was it?

The best thing that prepared me for my surgery was Rolf’s book, Alive & Kicking, that was given to me by my friend and WOCN, Lauri.  The book detailed Rolf’s journey and others who had extreme strength to not only survive,  but go on to achieve great accomplishments in their lives after ostomy surgery.  I called the publisher of Rolf’s book and left a message to thank them for touching my life in a positive way and preparing me for surgery scheduled for the next day.  Two hours later I received the most incredible phone call from no other than Rolf himself.  A true football hero was taking the time to listen to me and be “real” about the upcoming journey I was about to take.  I will always remember the strong but kind voice on the phone.

What do you wish someone had told you before your ostomy operation?

To allow others to help you deal with your immediate recovery.

Was there a specific WOCNurse or a doctor who helped you that you’d like to thank?  

Dr. Richard Greenberg, my excellent surgeon who helped answer all my questions pre and post-surgery and took the time to be kind.  His team of residents who provided the day to day care during my surgery and recovery at Einstein Hospital in Philadelphia, PA.  They included Dr. Jason, Dr. Justin, and Dr. Yang. Lauri Weiss, my friend and WOCN who also connected me with Michelle Quiggle who mapped my ostomy site prior to surgery.

 

Evonne’s Story

Diagnosed with Ulcerative Colitis at 15 years old. Some doctors think in retrospect I’ve had Crohn’s/colitis all along. I struggled with proctitis for one year prior to my ulcerative colitis diagnosis and two months later had my large intestine removed in an emergency surgery due to toxic megacolon. I was in the hospital the entire time from diagnosis to first surgery with little time to prepare.

What was your biggest fear? 

My initial fear was the immense pain I was in prior to the first surgery. In those days they didn’t treat with pain meds soas not to mask the symptoms of worsening disease like toxic megacolon. After receiving the temporary bag in a staged operation, the biggest fear was the bag leaking – which it did – and how I could get on with my life and fulfill my dreams.

Was there something you were worried you would not be able to do after your ostomy surgery?

Not anything in particular. I just knew I had surgeries ahead of me and wanted to get on with my life – go to college, date, and eat everything…and could I do those things?

Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t? 

I realized early on with the support of my family that I was gritty and resilient and saw my scar as a badge of honor. If I could make it through this I could handle anything that came my way…and I did.

How has your ostomy changed you? 

I learned at the age of 15 when I got my first ostomy that I can’t control what happens to me,but I can control how I handle what happens to me. This lesson was the foundation for the rest of my life and I am learning that this lesson is what most people strive to learn their entire lives. So, I see my illness as a life changing blessing and that I was able to learn this lesson young enough to allow it to shape the rest of my life.

What helped you most during your recovery? 

A few things. My family support, humor and advice from my father that I should freely share my story because if left to the imagination others will think worse than it really is and the energy you give out is the energy you receive back. A turning point for me was when I got out of the hospital after my first ostomy surgery. I was very weak from months of being so sick from the ulcerative colitis and then a major surgery leaving me with an ostomy. My chance meeting with Rolf gave me the hope that I would get my life back.

Did something help prepare you for your operation?  If so, what was it?

I really didn’t have much time to prepare for surgery since we had to make this decision in 48 hours. My family was my bedrock all along.

What do you wish someone had told you before your ostomy operation? 

That having a bag wasn’t so bad and that I would be able to do everything with my ostomy. It might’ve prevented many of the surgeries I endured that were performed to keep me from having a bag.

Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank? 

Joel Bauer, Dr. Irwin Gelernt (who has since passed), Dr. Stafford Broumand and Mount Sinai hospital in NYC – my second home after 21 surgeries and my medical school Alma mater.

Rolf’s Story

My ostomy changed my life…for the better.  Not only did it rid me of my ulcerative colitis, it gave me an incredible gift—an appreciation for life!  Of course, that wasn’t how I felt about it initially.  I was angry and depressed, and I hated those bags so much I could hardly bear to look at them.  You see, I was 24 years old, having the time of my life—a member of the San Diego Chargers, a team that was headed to the playoffs.  But suddenly, after playing the New England Patriots in the middle of my third season in the NFL, I collapsed on the team flight home and was immediately hospitalized. I would endure two emergency surgeries six days apart and when I woke up from the second operation, I was 65 pounds below my playing weight with two ostomy bags hanging from my sides. My body was massively infected, and my organs began shutting down as I battled sepsis. The doctors feared that I would not survive and frankly, I wasn’t sure I wanted to.  From my perspective, I believed my life was over—and that because of the bags on my body I would never again be able to participate in the activities that brought me the greatest joy.

After almost six weeks in the Intensive Care Unit, I was forced to confront the reality of living with an ostomy and face the difficult questions EVERY single ostomy patient asks.  Amazingly, I recovered and was given a second chance at life and was even able to return to the NFL where I had the privilege of playing, while wearing my ostomy bags, for seven more seasons!

It’s been nearly 40 years since I lay in that hospital bed staring up at those ceiling tiles, wishing I had died.  Even so, I remember it like it was yesterday—the fear, the shame, the doubt and the excruciating pain—both physical and emotional.  Just thinking about it brings tears to my eyes. Since then, I’ve had the honor of walking alongside countless ostomy patients who are facing the same things I did.  I’ve shared their sorrows and held their hands.  I’ve answered their questions, cheered them on, and stood with their frightened family members.  And I’ve been able to offer them the one thing that helped save my life—hope–the hope only someone who has walked in their footsteps can really offer.  I believe that without hope, you can do nothing but with hope, you can do virtually anything!   And my reward?  Seeing those courageous patients not just survive—but return to what they were passionate about doing!

Since then, I’ve dedicated my life to educating and encouraging ostomy patients, their families, and nurses around the world not to view their diagnosis and operation as a death sentence but embrace it as an opportunity to become transformed. Ultimately, it is up to each patient to make the choice between remaining “bitter” or becoming “better.”  I want to help each one of those patients choose “better.”

 

Rolf Benirschke – former NFL Man of the Year, Founder of the Grateful Ostomate and CEO of Legacy Health Strategies.