Bladder Cancer at Age 40 and the Path to Recovery

By Micheal Heath Waid

I noticed the faint pink color in my urine in November of 2018. I wasn’t sure what to make of it, but I mentioned it to my husband and he, being a nurse, suggested I see my General Practitioner immediately.

I made the appointment to see her. Assuming a UTI, she blamed me for “wearing dirty underwear” because it’s unusual for men to acquire that sort of infection. She tested me for an infection and gave me a prescription for antibiotics. Offended by her comments, I didn’t say much else. I took the medication and didn’t see the pink again. I assumed everything to be alright.

But then I saw pink urine reappear in August of 2019. I went back to my GP. Less snarky this time, she advanced a referral to the Urologist. The normal scans followed and discovered an anomaly in my bladder. A later cystoscopy confirmed two smallish tumors. The next parts of my journey are fairly standard. A Transurethral Resection of the Bladder Tumor followed the cystoscopy. The pathology from which confirmed muscle-invasive bladder cancer, Stage II.

Micheal with his husband James, a nurse, who encouraged him to see a doctor at the onset of his bladder cancer symptoms.

I had not heard many cancer survival stories. I spent a few days being completely devastated by the news, but fairly quickly something shifted me into business mode. I spoke with the Urologist who recommended chemotherapy followed by bladder removal. He explained the surgical options. He also explained that if I chose to not have the surgery that this cancer would ultimately result in my death.

Hearing that is not easy, but this decision was the easiest part of this entire experience. I elected to go through with the Radical Cystectomy to remove my bladder, prostate, seminal vesicles, and pelvic lymph nodes. I also elected, upon his recommendation, the neobladder option of urinary diversion. This Urologist would perform the surgery.

Port placement and chemotherapy next. Methotrexate, Vinblastin, Doxorubicin, and Cisplatin were the drug therapies the Oncologist felt would give me the best outcome. There were no illusions that chemotherapy would be the cure. Instead, they were used to increase my chances of survival post-surgery.

This Oncologist and the infusion nurses are the best medical professionals I have come across to date. The standard of care for chemotherapy recipients is off the charts here – which is wonderful because the chemotherapy portion of this trial is the worst experience I’ve ever endured. Trying to work through my chemotherapy proved much harder than I predicted, and I basically failed in that. I felt horribly sick all the time. I slept fourteen hours a day. By the end of my infusions, outside of the usual side effects of the drugs, I had developed several mental associations and the thought of certain mundane things made me feel sick. The thought of putting ice in my mouth made me sick. Receiving fluids to stave off dehydration made me sick. I could taste everything they injected into me. Luckily I only received four infusions, but I wouldn’t wish that on my worst enemy.

Surgery came about five weeks after chemotherapy ended. This gave me enough time to get some strength back. I still didn’t really have my hair back, but the beginning stages were sprouting.

This is where my fairly standard journey shifted. My surgery did not go as planned. I went under assuming I’d wake up with a neobladder, but instead I woke up with a urostomy.

My surgeon encountered complications in my abdomen that left him unable to create the neobladder. He consulted with my husband and they decided to go with our agreed-upon Plan B, the urostomy. The surgery took twice as long as planned, and according to my surgeon he was barely able to complete the urostomy because my blood vessels are “too short”. I’ve never thought of any part of my body as petite before.

I’m open about my circumstance and have realized that while bladder cancer is one of the most common cancers in the world, most people have no idea what this is all about

Post-surgery, I experienced a kind of reaction that cannot be fully explained. My kidneys were not functioning properly. My output was incredibly dark. So dark that they called in a Nephrologist for advice. My surgical team blames a drug called Toradol for the reaction while others blame the lengthened surgical process. I’m not really sure of the culprit but I am sure that I have permanent kidney damage from that surgery. The Nephrologist got me back on track quickly though.

This led to an extended stay in the hospital. Seven days total with intense back pain and lackluster care. I know that urostomies are not very common, but the nurses I encountered had very little exposure. One nurse throughout the week really knew how to apply the set up. It leaked a lot while in the hospital.
An ostomy nurse did visit me a little bit. I feared anyone touching my incision or my new stoma and couldn’t stop convulsing every time she tried to touch my abdomen. I know it frustrated her but it felt uncontrollable. She eventually quit coming by. They put us in touch with the major urostomy supply manufacturers so that we could begin ordering samples and from then we were on our own to figure out what worked. I haven’t seen an ostomy nurse since.

Recovery felt long. Six weeks away from work to heal. Moving was a challenge. Trying to sort out how to keep my urostomy from leaking challenged us. In the follow-up pathology from my surgery they also discovered that I had a second primary cancer in my prostate. Lucky to have had that removed as well.

It’s been a little over two years since my surgery and I’m doing well. I’ve sampled different supplies, and tried different ways to apply them, some successful and some not.

When I experience a leak I try to laugh about it. I am only 43 now with this permanent urostomy and I can’t spend the rest of my life being miserable. I choose to laugh when I pee on myself. Some times are harder than others, but overall I am pretty successful. I’m open about my circumstance and have realized that while bladder cancer is one of the most common cancers in the world, most people have no idea what this is all about. Luckily I’ve only encountered incredibly caring and receptive people.

By Ed Pfueller, UOAA Communications Manager

Beverly Dabliz is ready to celebrate a monumental 60th anniversary but even her closest friends do not all know what it is for. Recently she decided it was finally time to share the news. “Just last week I told a close friend I’ve known for 66 years – I’m the godmother of her twins, but even they did not know I have an ostomy. It was just not something people talked about,” Dabliz says. She adds “People are surprised to learn the news, but it does not matter to them one bit.”

Dabliz had ileostomy surgery in 1962 at Ferguson Hospital in Grand Rapids, Michigan. Ferguson was one of the first clinics in the world to perform such surgeries. By the time she turned twenty she was suffering from ulcerative colitis and by twenty-four ran out of treatment options. “After sixty years I have never regretted it, it has allowed me to live a great life,” Dabliz says.

Almost no one with the exception of her doctor understood the procedure and how to care for it. She knew she was on her own on how to carry on and reach her full potential.
Even if you have a great support network Dabliz recommends, “You have to own it and take care of it.” Ostomy supplies of that time bear little resemblance to the lightweight, contoured appliances of today. “I wore a heavy two-piece rubber appliance held on with an ostomy glue,” she recalls. It was not until the 70s that pouching systems began to evolve into something similar to the one and two-piece systems commonly used today.

“It was just not something people talked about,”

Over the years Dabliz has helped other ostomates in need through the Detroit Metro Ostomy Support Group. While doing hospital visits she would always appear in fitted clothes and enjoyed how grateful the patients were to hear from someone else living with an ostomy. She is happy about the recent return of in-person support group meetings. At meetings, Dabliz is sometimes surprised by some of the concerns new ostomates have regarding things like food, “I just tell them to be sure you chew your food very well, in the beginning, I tried it all without being scared but I’m still often the last one eating. I chew my food so well I’ve worn down teeth.”

Beverly Dabliz, right, works during a mission trip to Costa Rica with her Michigan church group.

Dabliz worked in the accounting department of a computer company in Detroit and Plymouth, Michigan for 45 years before retiring. Her boss was aware of her ostomy and supportive. “I never missed a day of work because of the ostomy,” she says.

Six years ago Dabliz had a fight with kidney cancer and three years ago a shoulder replacement surgery. But she has otherwise been fortunate to live a healthy life since the ostomy surgery six decades ago. She still makes it a point to get out of the house almost every day. “I have always been very active and really have not had any ostomy issues,” Dabliz says. In her eighties now, she still enjoys golfing and was in a bowling league for many years.

Beverly Dabliz working as a volunteer at the Eagle River Methodist Camp in Juneau, Alaska.

Dabliz can also still be found tending to her yard and is reluctant to give up shoveling the Michigan snow – though neighbors have started beating her to it. With the exception of some subtle changes, her ostomy regiment remains routine. She consistently uses the same products.

Dabliz is an active member of her church and has gone on many mission trips over the years in countries such as Jamaica and Costa Rica. “I’ve had to use outhouses in Alaska and done mission work after Hurricane Katrina,” Dabliz says. Even in these tight living quarters, nobody knew she had an ostomy.

An ostomy has never gotten in the way of her passion for traveling and cruising the world with her older sister. The pair have even circumnavigated Australia and New Zealand. Her advice; “I take extra supplies and always bring some on carry-on and have never had any trouble flying. Just do it. Go swimming, do whatever you want to do,” she says.

In celebration of her 60th Stomaversary and 85th Birthday, Dabliz is hoping to take a Holland America cruise around Iceland with her sister. Her minister and family have known of her ostomy but she hopes to tell more friends about what this landmark occasion means to her. Dabliz is confident they will take the news in stride as they help her celebrate a life that could have been cut way too short if not for that long ago ostomy surgery.

Cassandra Kottman’s Story

 

Kottman earning her 2nd degree blackbelt after a recent all-day test.

I started Shaolin Kempo Karate back in 2012. I had trained in Shotokan Karate in high school and really wanted to get back into martial arts. I’ve struggled with ulcerative colitis since I was 12 and staying active always seemed to help. My UC was still severe and I was in and out of the hospital quite often, so training was still a struggle. Eventually, my colon ruptured in 2016, and I was rushed to the ER and had to have an emergency colectomy. I was in pretty bad shape, and almost didn’t make it, even after the procedure. I was bedridden for about 9-months and on TPN for almost half of that dealing with the symptoms of pancreatitis.

I slowly got back on my feet. The whole time nurses were telling me that I wasn’t going to be able to live a normal life, and that I couldn’t do martial arts or many other kinds of activities. It was a very depressing time. Fortunately, I thought to ask my surgeon what kind of limitations I was going to have. She was so positive and let me know of another one of her patients who was a professional water skier, and the precautions he took to get back into his sport. That same day I went and ordered an ostomy guard, foam to make a belly pad, and texted my karate instructor to let him know I was coming back in.

My first class was absolutely horrible. All my muscles had atrophied. I did 3 stationary “jumping jacks.” Basically, I lifted my arms over my head three times and that was all I could manage. I almost passed out and ended up laying on the floor watching everyone else for the rest of class. I kept going back and pushed myself a little more every week. It took a good year and a half to get back to “normal.”

Because of the trauma I had gone through and my passion to continue training, I was inducted into the U.S. Martial Arts Hall of Fame as 2017’s Woman of the Year. Happy to say I am the first ostomate to ever be inducted. It’s a little weird to say, but I actually inspired myself, knowing everything I had gone through, and that I pushed myself to be my best. So, I continued to push my training to where I was able to train 3-4 hours 5 times a week. In 2018, I was invited to perform for the Abbot and test for my black belt at the Shaolin Temple in Dengfeng, China, which was a tremendous honor.

So, on November 6th, I took the test. Six intense hours of high-intensity drills, sparring and defense maneuvers against fists, knives, and clubs. I could barely move the next day, but it was all worth it because I passed. It really is a good feeling, and I’ve impressed myself with how hard I can push myself.

I still deal with day-to-day issues like hydration, or general fatigue, but overall, everything is manageable. If I have learned anything it’s that you need to listen to your body, and if there is something you really want to do, you can find a way to make it happen. It might not be the way everyone else is doing it, but all that matters is that it works for you.

People often wonder what to say to others, especially to children or grandchildren, when they first learn about an ostomy. While what kids ask can sometimes be surprising, their sincerity can brighten your day. Hollister Incorporated brought kids and ostomates together to learn about stomas for the first time. Hear what they had to say by watching this video –

About the Ostomates:

LeeAnne Hayden @leeannehayden

LeeAnne Hayden stepped away from a successful corporate sales career to build an online social selling business at age 40, and then was diagnosed with a rare form of cancer, which resulted in ostomy surgery. This would serve as her wake-up call to find ways to help herself and others overcome the stigma of living with an ostomy. Now, at age 50, LeeAnne has created a podcast called The Beautiful Bag. Read more about her story here.

Stephanie Bension @missbension

In 2004, when Stephanie was in high school, she was diagnosed with a combination of Crohn’s disease and ulcerative colitis. At 24 years old, she found herself in the emergency room faced with the reality of receiving an ileostomy. With time and support from her family, she started to share her story with others on social media. She is now a professional speaker who charms diverse audiences. She holds a degree in Radio-Television-Film from The University of Texas at Austin, which has allowed her to have unique experiences in several professional fields. You can learn more about her at www.stephaniebension.com.

Collin Jarvis @collinjarvis

Collin Jarvis was diagnosed with ulcerative colitis when he was a junior at the University of California, Berkeley. His body rejected drug treatment to the point where he lost 30 pounds and was sleeping 15 hours a day. Due to this, he underwent emergency ostomy surgery with the removal of his colon. Barely five years after his ostomy surgery, however, the news headlines screamed: “Collin Jarvis Runs Sub-2:30 in One of the Fastest Marathons Ever With an Ostomy.” As evidenced by his marathon-running success, Collin now has the wind at his back and a whole new purpose in life, including being vice president of Stealth Belt, an ostomy support belt manufacturer.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

This event has passed but you can view it below. “This is My Life Now: A Patient Guide to Advocacy” By ConvaTec featuring UOAA Advocates.

Join ConvaTec for a live discussion with ostomates, nurses and other healthcare professionals at their two-session, one-day virtual summit on Friday, October 1, 2021.

“Ostomates’ Rights Are Human Rights – anytime and anywhere” is this year’s World Ostomy Day theme, which is why ConvaTec is bringing together ostomates, nurses and caregivers to lead open discussions that will be patient rights-focused fostering awareness, education, and advocacy.  Together we will have conversations that matter!

The Patient Summit will be broken into two sessions:

Session 1, 1pm EST: This Is My Life Now: A Patient’s Guide to Advocacy:

Joanna Burgess, BSN, RN, CWOCN. Is a WOC Nurse at Convatec and is Co-Chair of UOAA’s Advocacy Committee

Jeanine Gleba, MEd., UOAA Advocacy Manager

Ellyn Mantell is a UOAA Advocate, Author and Ostomy Support Group Leader.

Did you know that by knowing your patient rights and feeling empowered and exercising those rights – you can take those situations where you felt down and make it positive. Think, “This is MY life now. I have the right to be me.”

Learn about your local and international ostomy support resources, understand your patient rights, and feel empowered to exercise those rights in this session.

Scheduled panelists:

• Ellyn Mantell (United States), UOAA Advocate, Ostomy Support Group Leader

• Jeanine Gleba (United States), United Ostomy Associations of America, Advocacy Manager

• Joanna Burgess (United States), WOCN, ConvaTec me+™ Nurse, UOAA Advocacy Committee Co-Chair

 

Session 2, 3pm EST: Creating a Healthy Bond: Healthcare Support for Your Patients:

Allison Rosen is UOAA’s World Ostomy Day Champion, a colorectal cancer advocate and Ostomy Support Team Member at MD Anderson.

Healthy bonds in life are all around us. But there may be times it feels difficult to bond. Do you know, or do your patients know, about the resources available for support? Whether that is support with a nutritionist so they can learn about fiber intake, or with an exercise therapist to get guidance on hernia prevention. It could even be the support a therapist can provide navigating new emotions in your personal relationships. There are healthy bonds that can be built between an ostomate and their healthcare professionals.

Create a strong bond with your patients and healthcare providers. Get to know the different types of pre and post-operative support available.

Scheduled panelists:

• Lorena Eltz (Brazil), Patient Advocate

• Lorraine Grover (United Kingdom), Psychosexual Nurse Specialist

• Allison Rosen (United States), United Ostomy Associations of America- World Ostomy Day Champion

 

Editor’s note: This blog is from ConvaTec, Platinum Sponsor of the 2021 Run for Resilience Ostomy 5k. This event raises ostomy awareness and helps fund the services and programs of UOAA, a 501(c)(3) nonprofit organization.

 

Have you ever wondered what you should be doing to fill your time as you recover from ostomy surgery?

After my first surgery at the age of 17, and even after my third surgery at the age of 23, I spent most of my time lounging around my parents’ house, waiting for the day that I would be cleared by my surgeon to return to “normal” activity. My parents would coax me out of the house to go on one walk a day, but I spent almost all of my time watching television and YouTube videos and sleeping.

Fast forward to age 30. At age 30, I ended up having my sixth major abdominal surgery. And by this point in time, I had been working as an Occupational Therapist (OT) in a hospital setting for six years. For six years, I had been helping other individuals recover and rehabilitate from major illness and injury. I had also spent years recreating in the mountains and enjoying a highly active lifestyle. So when I found out that I needed a stoma revision, I knew that my recovery would look very different from my previous surgeries. I knew that in order to improve my recovery time, decrease my risk for complications, and get back to the mountains, I had to put in more work.

For those who are less familiar with the rehabilitation professions, “Occupational Therapists enable people of all ages to live life to its fullest by helping them promote health, and prevent – or live better with – injury, illness, or disability” [1] and “Physical therapists [PTs] are movement experts who improve quality of life through prescribed exercise, hands-on care, and patient education” [2]. Although I’m an OT, seeking out my own rehab professional to work with was the best thing I could have done.

I already knew a lot of the basics of how to rehab myself, but having someone else who I would be accountable to and who I could bounce ideas off of was a bonus. I knew from my training as an OT that one 30-min therapy session prior to abdominal surgery, reduces the risk of complications by 50% [3]. So the first thing I did was set up an appointment with a pelvic health therapist prior to my surgery. I was able to find a local pelvic health PT to work with, although, both OTs and PTs may specialize in pelvic health. I sought out a pelvic health therapist because of her specialty training in digestive and urinary systems and the interaction between the abdomen and pelvic floor. In my time working as an OT, and in my time spent working with many PTs, I’ve learned that there are fundamental areas that ostomates should be targeting after surgery to improve their outcomes. Working with a therapist in the following areas can be quite beneficial:

Therapeutic Breathwork. Breath is necessary for life. If you aren’t breathing properly, you certainly won’t be getting back up on your feet and recovering from surgery any time soon. Breathing properly can also help decrease the pressure in your abdomen (i.e. intra-abdominal pressure) which decreases your risk for parastomal hernia and other complications.

Mobility Training. Focusing on walking in a strategic manner following surgery can also set you up for success in the long run. Not only is walking good for building up your endurance again, but it is a great way to begin engaging your core in a gentle manner.

Core Recovery. After surgery, your abdomen can be very tender. But it’s important to begin exercising in order to coordinate your abdominal muscles again and gain strength so that you will be less likely to injure yourself in the future.

Functional Daily Activities. Finally, as you go about your day-to-day routine, some tasks will feel more difficult than they used to. For example, bending to put on your socks can be painful and can pull at your incision. Working with a therapist on strategies to increase your independence and return to the daily activities you enjoy is invaluable.

I’m lucky that I decided to become an Occupational Therapist. It has enabled me to empower myself with knowledge about the human body and recovery from surgery. But you don’t have to be a therapist to have a positive recovery experience and lead a fulfilling life. If you’re feeling stuck, seek out a rehabilitation professional. You deserve quality care and support to feel confident and strong after surgery.

Wishing you well on your ostomy journey,

Charlotte

As you start your journey to recovery, you’ll experience that life after ostomy surgery is a new reality. No matter how far after surgery you are, you will need to adapt to your condition and cope with your new situation. If you’re looking for additional support during your ostomy journey, consider enrolling in Coloplast’s free online support program, Coloplast® Care! It is a personal product support program designed in collaboration with nurses to provide you with individualized product support and lifestyle education, and product access coordination. Coloplast Care is available when you need it – whether it is through our online educational resources offering reliable product and lifestyle advice, news and tips customized for your situation, or over the phone with our team of dedicated Ostomy Advisors. We’re here to help!

Visit us at www.ostomy.coloplastcare.us or call 1-877-858-2656.

Information from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations.

About the author:

Charlotte Foley, MS OTR/L, CBIS, received her Occupational Therapy degree at Boston University and began her career in the adult Inpatient Rehabilitation setting. She now works in the adult Acute Care setting at Providence Alaska Medical Center in Anchorage, Alaska. Because of her own personal and professional experience, Charlotte founded and runs her own education and consulting business, Restorative Ostomy Solutions, to empower individuals to feel strong and confident as they recover from ostomy surgery.

Charlotte has received compensation from Coloplast to provide this information.

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

 

References

[1] AOTA (2021). What is Occupational Therapy? Retrieved from

https://www.aota.org/conference-events/otmonth/what-is-ot.aspx.

[2] APTA (2021). What Physical Therapists do? Retrieved from

https://www.apta.org/your-career/careers-in-physical-therapy/becoming-a-pt.

[3] Boden, I., Skinner, E., Browning, L., Reeve, J., Anderson, L., Hill, C., Robertson, I., Story,

D., & Denehy, L. (2018). Preoperative physiotherapy for the prevention of respiratory complications after upper abdominal surgery: pragmatic, double blinded, multicentre randomised controlled trial. British Medical Journal, 360:j5916. http://dx.doi.org/10.1136/bmj.j5916

By Jeanine Gleba UOAA Advocacy Manager

Every three years, ostomates around the world come together to celebrate World Ostomy Day on the first Saturday in October.  This year it will be held on October 2, 2021 and the European Ostomy Association (EOA) has declared the motto as “Ostomates’ Rights Are Human Rights – anytime and anywhere!” It is an opportunity for the world to join forces to increase public acceptance of ostomy surgery and to help people to better understand that health is a human right for everyone.

During the Covid19 pandemic the ostomy community around the world has been impacted such as ostomy nurse visits in the home being reduced and peer-to-peer support visits from an ostomy mentor in the hospital stopped.  In some countries, there has been limited access to ostomy supplies due to supply chain issues and/or limited access to affordable ostomy appliances. As a result, the EOA wanted to rekindle a focus on the Charter of Ostomates Rights

In the United States an ongoing UOAA advocacy initiative is to improve the quality of ostomy health care and ensure higher standards of care in all health care settings. One strategy to drive this change has been the utilization of the “You Matter! Know What to Expect and Know Your Rights Ostomy and Continent Diversion Patient Bill of Rights” as it specifically defines what high quality care should be expected and received during the ostomy surgical experience and for continuum of care. 

With the World Ostomy Day motto we will join the worldwide movement and the EOA’s goal to: “underline that ostomate rights are not negotiable. They must be respected by governments, politicians, healthcare authorities, companies and suppliers, by doctors and nurses, by every human and by every society – even in uncertain times.” 

Quality ostomy care should be provided to all regardless of race/ethnicity, age, gender, religion, place of birth, health or other status (even having an ostomy!). This World Ostomy Day you can help us drive change in the United States. Share the newly revised patient bill of rights poster (11×17 for printing purposes) with your ostomy surgeon, GI doctor, Primary Care Physician and/or ostomy nurse.  Ask them to ensure that these standards of care are utilized in their practice. 

As always there will be many other fun and important ways that people can participate in this year’s celebration! You can:

  • Attend an Online Event. UOAA 2021 Ostomy Awareness Day Champion Allison Rosen will kick-off the day with a Facebook/Instagram Live on the morning of October 2nd and also host a candid Q&A that evening. UOAA representatives will also take part in a host of ostomy educational events with partner organizations and others leading up to and immediately after World Ostomy Day. Follow us on Facebook, Instagram and TikTok for updates.
  • Watch our brand-new Ostomy and Continent Diversion Patient Bill of Rights animated series (Link available in September during the weeks leading up to World Ostomy Day)
  • Walk, Run, Roll or Pedal at UOAA’s 2021 Virtual Run for Resilience Ostomy 5k anywhere in the world. Register here and you’ll have the option to get our special World Ostomy Day t-shirt. This virtual event helps UOAA raise much-needed funds to improve quality of life for people living with an ostomy or continent diversion
  • Help UOAA get a proclamation declaring World Ostomy Day from all 50 states!  A sample is also available to download on our webpage noted below or you can take action at the state level here.
  • Upload our special “frame” for your social media profile photos that says you speak up for ostomy rights and use the hashtags: #WorldOstomyDay, #OstomyRights, #MyAccessMatters
  • Submit a letter to the editor of your local newspaper or reach out to local media. 
  • And so much more!

Visit the World Ostomy Day webpage for further details about the special events and the full list of all the ways to get involved.  

Let’s make the voice of ostomates in the United States heard around the world this year!

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This article was created by Takeda.

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

 

Photo Cred:  Dave Camara / Camara Photography

 

By Ed Pfueller, UOAA Communications & Outreach Manager

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

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

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

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

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

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

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

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

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

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

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

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

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

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