Tag Archive for: ostomy

Resilience Story: Brittany Jackamonis

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Health and wellness have always been a big part of my life’s journey. I grew up running track and cheerleading, and then found a new love in CrossFit in 2012, which really took fitness to another level for me. As a wife, mom, minister, and police officer, I was living out some of my healthiest and best years.

But life took a sudden turn in September 2022. Severe stomach pain dropped me to my knees. It was discovered that I had ulcerative colitis; a chronic inflammatory bowel disease that causes inflammation and ulcers in your colon and rectum. I was already at the level of what doctors refer to as a Mayo 3, most severe.

Life spiraled quickly: instant dramatic weight loss, six colonoscopies later, multiple hospital visits and stays, various CT scans, lengthy infusion sessions, infections throughout the colon, in and out of a restroom multiple times a day; my quality of life no longer existed. I suffered painfully, while still trying to show up for my family, career, and ministry.

Talks about an ostomy bag started very early into my diagnosis, but I just couldn’t wrap my mind around having a bag attached to my stomach. I endured pain and suffering but surgery eventually had to happen; life simply couldn’t carry on the way it was going for me.

Then came the ostomy in January 2026! And I can actually say this with pure excitement! Because although I had to have my entire colon removed and a piece of my small intestine (stoma) flipped to the outside of my stomach, my quality of life is back! My fitness is back! My health is back! I’m fully back for my family, my career, and ministry!

My ostomy gave me the option of restoring my health, and has shown me a new level of resilience. It doesn’t define who I am, but proves strength, perseverance, and empowerment!

Working in law enforcement with an ostomy is pretty unique. When I first returned to work after  two months off, I remember being excited and anxious. I was excited to be feeling so much better and returning to my Team, but anxious to see how wearing my gear around my waist would feel on my bag. I remember going to the shooting range for practice just to feel how different shooting positions and pulling from my holster felt. All has been extremely normal and well for me back on duty! It’s been 18 years in law enforcement, and I can still do everything the same!

I wanted a fun active way to bring those with ostomies together to be bold and build confidence.

I learned about UOAA by doing research online a few months after my surgery. I knew I wanted to do something big in the ostomy community but I didn’t want to reinvent the wheel. I found UOAA and the Ostomy 5Ks that take place around the Nation, and I was all in! I knew I had to bring this type of energy and awareness to South Carolina.”

I wanted a fun active way to bring those with ostomies together to be bold and build confidence. I noticed right away that many people with an ostomy were ashamed and lacked confidence. I knew it was time for a confidence boost! I also want a way for the community to show up to support and become more aware of what ostomy bags are and how much they truly give life back. I’m excited to host the Inaugural Run for Resilience Ostomy 5k in Columbia, SC on  Saturday, October 10th in celebration Ostomy Awareness Day at the beautiful Sesquicentennial State Park! 

I’m also happy to be back at my favorite place, Carolina CrossFit It is a breath of fresh air! I lift and move just fine. If we have burpees, wall walks, bar muscle ups (those movements that require you to have pressure near the stoma area) I know when and how to modify. I limit myself little to none when it comes to fitness. An ostomy bag doesn’t stop my CrossFit workouts. Put a barbell in my hand any day, and we are taking it for a nice spin!

My advice is (after being cleared from your doctor and discussing parastomal hernia risk), don’t limit yourself. Know what works for you, stay hydrated, secure your stoma and ostomy bag with a fitness wrap, and put in the work. You’re not immobile, you’re just uniquely you!

Every ostomate’s journey is different, but one thing is commonly shared: We are resilient!

 

Celebrate your resilience and participate in a Run for Resilience Ostomy 5k event near you or host your own Virtual Ostomy 5k event wherever you are. Donate in honor of Brittany’s resilience or learn more about her Ostomy 5k event in South Carolina!

Resilience Story: Denise Miller

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On Nov. 6, 2022 I was bike riding with my husband and started having pain on my right side. Dr. Goggle said it could be appendicitis. So, I went to the ER and found that it was not my appendix but that I had ovarian cancer. At the time, 55 years old, I thought I was in good health. I was shocked, depressed and scared to death having to deal with cancer. I went to the oncologist and was learned I was going to need a total hysterotomy and that there was a shadow on my large intestine but that she would not know what it was until the surgery.

There was the possibility that I would need a colostomy. Ok, I thought, now dealing with cancer and the possibility of an ostomy, I was more depressed and felt my life was over. How can I deal with an ostomy and cancer?

On December 27, 2022 I went in for my surgery and came out with an ostomy. Apparently, the cancer had wrapped itself around the large intestine and a large portion had to be removed. I was given a colostomy and a chance to leave a normal healthy life.

I was depressed though and thought how in the world can I go on with this? The cancer part was gone and I did not have to go through chemo but on medicine and three month check-ups with an oncologist for the next five years. But now I had to deal with an ostomy.

Shortly after I was home from the hospital, I met my guardian angel (The greatest ostomy nurse) Andrea Torok who taught me, encouraged me and helped me mentally get through so much dealing with an ostomy. I was told I could do what I did before and more. She and my husband Guy Miller got me through so much and I’m so grateful for them both.

Andrea encouraged me to start an ostomy support group in Ann Arbor, Michigan and I thought, what? Me? I have no clue how to do that?

I feel great running and so much healthier, with more energy than before.

United Ostomy Associations of America assisted me in starting an affiliated group and after two years we have about 20 people in the group.

I was also excited to feel better and started running again as I had before surgery. Once able to get back to running I was soon doing 5K races and winning my age group! I feel great running and so much healthier, with more energy than before. I wear a binder when running daily and lifting weights.

I also hike, bike and live life to the fullest. I for sure have my down days, but think that I am here, healthy and helping others any way that I can.

Last year I was thrilled to learn about the Run for Resilience Ostomy 5k that is celebrated by UOAA for National Ostomy Awareness Day.

I traveled to Cleveland, Ohio from Michigan for the event. I felt very inspired by all those that participated in the run/walk. People wearing their bags on the outside of their clothes, the shirts folks wore, and just feeling so comfortable about their ostomy. I felt very welcomed and free to wear my ostomy outside my clothes and not feel ashamed.

I was inspired to increase awareness of ostomies in Michigan so this year I’m organizing the first annual Run for Resilience Ostomy 5k in Ann Arbor on Saturday, October 3, 2026.

Many people have them but feel like cannot talk about it and that makes me sad.

As I have been fundraising for this event and the mission of UOAA, I have heard so many stories about people that have ostomies, know someone, or have had an ostomy reversed and want to be a part of increasing awareness.

I have realized that I am not alone in this and so many people in Michigan want to help and be a part of this. I also have a goal of getting the younger generation involved.

Ostomies do save lives and we can do what we want if we put our minds to it!

 

Celebrate your resilience and participate in a Run for Resilience Ostomy 5k event near you or host your own Virtual Ostomy 5k event wherever you are. Donate in honor of Denise’s resilience or learn more about her Ostomy 5k event in Michigan!

Squid Game: The Challenge Contestant Embraces Life with an Ostomy

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My ileostomy and how it gave me the confidence to participate in such a wild adventure!

By Kathy Kelly #258

Squid Game: The Challenge Season 2 streams on Netflix starting November 4

At age 35, while pregnant with my 4th child, I was diagnosed with ulcerative colitis. The symptoms appeared out of nowhere during my pregnancy and unfortunately, because I was pregnant, there was very little that could be done to manage my disease.  After giving birth to my daughter, I immediately sought medical intervention to address my UC symptoms, but relief was terribly elusive.  I went from being an active, social, and extroverted person to not wanting to leave my house.  Not only did I have little to no control or predictability of my colon, but I also struggled with intense cramping, mouth sores, and copious blood loss.

Kathy Kelly is featured on the poster of Season 2 of Squid Game: The Challenge on Netflix.

Over the next 18 months, I tried several different “Biologics” and endured multiple rounds of steroids.  Each new medicine brought with it the hope of relief, but that hope was never realized as I never experienced meaningful healing.  I spiraled into thinking and feeling like I would never be healthy again – UC was now dictating the terms of my quality of life.

After nearly 20 months of a losing battle with UC, my doctor made me aware of the “nuclear” option – I could have my colon removed and be fully healed of UC.  In hindsight, it seems so obvious, but at the time, I remember shuddering at the thought.  Yes, my UC was awful and yes, I was spending all of my waking hours desperately trying to manage my symptoms.  But having “a bag” felt like it was way too extreme.  My husband and I discussed it and I met with other GI docs to discuss the process and the more I learned about it, the more the lifestyle was normalized for me.  I found people online that shared their experiences and one thing stuck out to me – they had control.  For nearly two years at this point, I had completely lacked control.

So, in May 2021, after 22 months of suffering in relative silence with UC and with the support of my medical team, I had my colon removed and was given an ileostomy.  While there was certainly an adjustment period – learning how to change my bag and care for my stoma – the immediate relief was shocking.  However, it wasn’t all positive.  Even some of my well-intentioned nurses would say things like “hopefully, this is just temporary and you’ll be back to normal soon”, and I remember feeling like neither my UC nor my new reality with an ileostomy was normal.  I quickly overcame that because of the obvious improvements to my health and quality of life. I made the decision just 4 months later to make my ileostomy permanent by having my rectum removed.

Having a permanent ileostomy has certainly been a journey – I had a peristomal hernia that required an additional surgery and I’ve experienced all of the typical “first timer” experiences – catastrophic leakages while on a date or at a friend’s house.  But, I can stay with completely certainty that my ileostomy has given me my life back.  I’m as active as ever.

I’m engaged in relationships with my husband, children, family, and friends.  I’m excited to be pushed out of comfort zone again – and to that end, I recently participated in Season 2 of Squid Game: The Challenge on Netflix!

We watched the first season of Squidgame Game: The Challenge as a family and we loved it! My husband made a silly comment to the kids saying “your mom would be able to kill all of those players” and when the kids saw that they were casting season 2, they begged me to apply. I just assumed my application would be lost in the thousands of emails, but fortunately something caught their attention!

It was an incredible experience that involved international travel, intense competition, and long hours of uninterrupted filming. My doctor even said limited bathroom breaks would probably be easier for me than most!

If I was still dealing with UC, I would’ve never trusted my body to take on something this challenging and stressful!  My ileostomy has restored my health, my energy, and my control and I’m incredibly grateful for it!

I think most of the friends I made while filming would be SHOCKED to learn I have no colon-which I love! My bag saved my life, and it’s something I’m really thankful for.

My husband was my biggest supporter. His encouragement allowed me to engage and play without any of the self-imposed pressure that had been building for months with this big secret! Now that the show is airing it is no surprise to friends that I would do something like this because I am so competitive and love engaging with people!

 

Editor’s note: You can now cheer on Kathy Kelly on Squid Game: The Challenge Season 2 on Netflix. Win or lose, we know the resilience of an ostomate is not a force to reckoned with! United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery.

This Pop-up Ostomy Clinic is A National Destination

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By Ed Pfueller, UOAA Communications and Outreach Manager

There is a stoma clinic so good that some people anticipate it every two years and travel from halfway across the country to go to it.

This free stoma clinic is staffed by volunteer Wound, Ostomy and Continence (WOC) nurses and medical professionals and is always included as part of UOAA’s National Conference. This summer the conference is back and a few ordinary rooms of the Hyatt Regency Grand Cypress Resort in Orlando, Florida will be transformed into a bustling stoma clinic from August 14 through 16. This free stoma clinic is stocked with a wide variety of supplies donated from manufacturers and other ostomy-related companies, large and small, for people to sample.

“The WOC nurses are helpful, informative, and full of suggestions and encouragement.”

UOAA Board Member Laura Kaiser, APRN, A-CNS-BC, WOCN is organizing the clinic and volunteer nurses this year. “My colleagues in ostomy care are very generous and giving individuals and are always willing to offer guidance and advice within their specialty. Many ostomy nurses have been lifelines to people through crises. A clinic often allows a nurse a different perspective on life! Ostomy nurses from past conferences say this is the best and most fulfilling conference that they have attended.” She says.

The conference attendees feel gratitude for the nurses. Gail Jasne attended the conference and stoma clinic in 2019 and said, “The WOC nurses are helpful, informative, and full of suggestions and encouragement.”

Mary Hardee attended the conference for the first time in 2023. “My first session was the free stoma clinic. The WOC nurse was very knowledgeable, reassuring and helpful. She let me try a different appliance that met my needs better and she gave me samples to try at home. She also noted that I have a hernia and educated me on that.” Hardee says.

Kaiser says stoma clinic patients should expect to be asked helpful questions to get the root of problems such as:

  • Is your skin red and irritated, does the pouching system leak?
  • Please describe what happens when the pouch leaks and where does it leak?
  • What time do you eat your dinner?
  • Show me how you clean your skin.
  • Does your stoma or the skin around your stoma bleed?
  • Patients often cut the wafer too large or too small and crust incorrectly, I always ask if I may measure their stoma.
  • What pouching system lasted longest and was the most comfortable / what is the longest wear time?

UOAA believes that the best ostomy clinic is the one you can visit the soonest to solve an ostomy problem before it gets worse. That’s why we created the Ostomy Outpatient Services Locator to search for the one closest to you and champion the UOAA Virtual Ostomy Clinic with The Wound Company for a self-pay solution you can access wherever you are.

Jill Jeffries shared her experience and perspective meeting other ostomates gave her. “The nurse explained how I could better wear my pouch system to protect my stoma and surrounding skin from possible irritation. Many people I met had much more serious issues than mine, and I left with a few new friends and great gratitude that my situation is so manageable. I also took away several samples of products new to me that I believe will be very helpful,” Jeffries said. “Thank you for such a great opportunity! I hope to see everyone at the next UOAA National Conference.” she added.

“She let me try a different appliance that met my needs better and she gave me samples to try at home.”

As for the ostomy supply samples that will be available this summer Ostomy Nurse Kaiser says, “If all of the manufacturers come through then the inventory should be extensive and will offer patients and nurses alike a great opportunity to see what is available to the consumer.”

There are typically 18 to 30 volunteers helping in the stoma clinic so Kaiser says if they have enough nurses this year, one WOC Nurse will see patients and make recommendations and be paired with another medical professional (who may or may not be an ostomy nurse) who would act as a runner, assistant and overall helper. 

“The stoma clinic along with our huge ostomy product exhibit hall is something that really makes UOAA National Conferences so unique,” says UOAA President Cheryl Ory. “There are people who very infrequently see an ostomy nurse but when they arrive at our conference always check in at our stoma clinic to see what small improvements they may be able to make in their ostomy health.”

This year the free stoma clinic will be open 8:00 am to 5:00 pm Thursday, August 14 and Friday August 15 and 8:00 am to Noon on Saturday, August 16. 

“Conference registrants can sign-up through our new conference mobile app by selecting the time slot that works for them and add it to their calendar of sessions and events, or in-person at the information desk when they arrive to check in,” says UOAA Executive Director Christine Ryan.

Thank you to the the companies that donate supplies and the nurse volunteers who provide this service to our community at each UOAA National Conference!

Ostomy Motivates Life after Coma

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My Ostomy Story

By Carol Billian

I only know my story because my family told me. I was in a coma after suffering an abdominal aortic aneurysm, which caused my colon to rupture. I was in septic shock and multi-organ failure. Doctors performed an emergency ileostomy, and told my family on numerous occasions they were not sure I would survive.

After being in the ICU for 35 days, on a mechanical ventilator, and hospitalized for four months, I was finally discharged after completing a cycle of intensive physical therapy. At discharge, I weighed 69 pounds. I had to move in with my Mom for two years, while I gained weight and she nursed me back to health.

Over the next two years, I would need four additional surgeries to revise my ileostomy, open heart surgery because of damage to my heart from the sepsis, and ultimately a surgery to revise and relocate my ostomy. As of this writing, my weight has finally reached 95 pounds, which is still very underweight. It has been very difficult gaining because my body has difficulty absorbing nutrition.

I finally heard about UOAA, when I complained to my ostomy nurse there were no resources near me in Maryland to support ostomy patients. As a result of everything I endured, I vowed to go on and help other people. I am on social media platforms as @Carsueb, advocating for ostomy patients, and providing all kinds of facts, tips, and ways to handle your Ostomy. I also attend Ostomy Support groups to help people, and support groups for ICU Survivors, like myself.

An ostomy can truly be a lifesaver, as mine was. It was not the end of my life, but the start of a new, different life.

Peer support is mandatory for those with ostomies. I speak about my ostomy to everyone who will listen. It is a part of me, and no one should feel embarrassed or afraid to talk about their Ostomy. If more people spoke openly, doctors would not tell their patients an ostomy is a last resort. They would tell their patients, “Ostomy surgery will give you back your life, and will give you a great quality of life.” This is what I hope to accomplish in talking to Colorectal surgeons. I do not want them telling Crohn’s or UC patients an Ostomy is their last resort.

I’m on an Advisory Board at the University of Pittsburgh Medical Center, and local hospitals in Baltimore. These surgeons respect what I’m doing and have asked for my help.

I want to help prepare people for surgery. I want them go in with a positive outlook. I tell them what their body will look like after surgery, how they will feel, and what to expect. I show them my stoma. Knowledge is power. I don’t want them to feel afraid, so I am totally open.

An ostomy can truly be a lifesaver, as mine was. It was not the end of my life, but the start of a new, different life. I feel very lucky. I feel very blessed and feel I must tell my story to help as many people as I can. I am trying to normalize the talk about ostomies, and remove the stigma.

Lori’s story: Living with Crohn’s Disease, Ostomy, and Short Bowel Syndrome

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Having lived with Crohn’s disease for 43 years, and an ostomy for 35, Lori Plung had known it was possible she would go on to develop Short Bowel Syndrome (SBS). Eight years ago, following her fifth surgery, SBS and the need for intravenous nutrition (TPN) became a reality.

In recognition of Crohn’s and Colitis Awareness Week (1-7 December 2023), Lori generously shares some of her experiences, and the advice she’d give to anyone grappling with complexities of inflammatory bowel disease (IBD) who may be facing the possibility of developing SBS as a result of surgical procedures to treat their disease.

Learning to live with Crohn’s and an ostomy

When I was diagnosed with Crohn’s disease at 16 years old, the thought of having to have “a bag” was, quite frankly, terrifying. But at the age of 24, the disease overtook my entire being. I had debilitating pain, cramps, bloody diarrhea and urgency, and I was up multiple times a night – I often couldn’t leave my house for fear of an accident. I was too sick to eat and had no energy.

Eventually I needed an emergency proctocolectomy. My colon, rectum, and terminal ileum were removed, and replaced with a permanent ileostomy. I had been so sick before surgery that I was very weak, and recovery was incredibly hard.

But what surprised me most? The feeling of relief. I was free! As I recovered from the procedure, my pain and symptoms were gone. Suddenly, I could eat what I wanted, and I started feeling back to myself. My quality of life improved and my stoma became my new best friend.

Though I was grateful for this new lease on life, it came with challenges. The Crohn’s disease returned a year later in my small bowel, presenting as multiple strictures and obstructions. I was now navigating flares with an ostomy, often experiencing high output which required supplemental outpatient intravenous hydration, magnesium, and potassium to get my levels back to normal.

What is Short Bowel Syndrome?

Five more surgeries followed in the span of 32 years, with the intention of saving as much bowel as possible. I heard mumbles of avoiding “short gut”, but nobody sat down and explained what that meant. I wish I’d known more about it sooner.

Short gut, also known as Short Bowel Syndrome (SBS), occurs when your bowel doesn’t have enough length to absorb the nutrition and hydration your body needs on its own. In most cases, it happens as a result of major surgical resection of the small intestine, necessitated by conditions like Crohn’s and colitis. For a patient like me, with only 69cm of intestine remaining, intravenous nutrition and hydration support is needed to keep my body functioning properly. This is known as Total Parenteral Nutrition (TPN).

Coming to terms with a new normal

TPN nourishes my body with the nutrients it’s not capable of absorbing on its own. It’s delivered via a Hickman catheter in the upper left part of my chest, infusing through a pump stored in a backpack while I sleep.

Coming to terms with that wasn’t easy for me. I’d been on TPN before surgery to increase my nutritional status, and I assumed I would be off it at some point during my recovery. But with the SBS diagnosis, that was unlikely to happen. I had a very hard time accepting the fact that I would have to live with a central line for the rest of my life.

Therapy has been invaluable in helping me learn how to cope and accept. I learned that I can dislike having to hook into my TPN each night, and at the same time, I can be grateful for it, and for the life it allows me to lead. These two truths can co-exist together – and that way of thinking has helped me to accept my new normal.

Goals

I’m also hopeful that I can reduce my reliance on TPN over time. For patients like me, the goal of SBS management is to increase valuable time off TPN through intestinal rehabilitation. This uses approaches including diet, medications, and surgery to help the remaining GI tract work better so that it can absorb more nutrients from eating. Not all SBS patients are the same, so it’s important to understand each individual’s needs and explore the best options.

It’s also crucial to have the support of a medical team that specializes in IBD and intestinal rehab. Since my SBS diagnosis, I was careful to choose a multidisciplinary team at an academic medical center that is part of the Gastroenterology Rehabilitation and Transplant Program. My physician is an IBD specialist and the director of the nutrition support program, and I’ve worked closely with a dietitian who specializes in treating patients with SBS. Their support has been life-changing.

Need to Know

Having spent over 40 years navigating the complex journey from Crohn’s to SBS, I am now an advocate for patients with inflammatory bowel disease. Here are some of the most important things I think patients should know when managing their own condition:

  • Preserving Bowel
    As a Crohn’s patient, it’s important to be aware of potential complications of surgery, and the possibility that losing large sections of small bowel can lead to SBS. Make sure to discuss this with your healthcare team before surgery, and wherever possible, look for ways of minimizing bowel loss.
  • Learn About SBS
    Being educated, and aware of the resources available to you, gives you the opportunity to have important discussions with your medical team and seek out the best possible care. You can access resources, support, and education through UOAA and other organizations such as the Oley Foundation, IFFGD, Transplant Unwrapped, The Crohn’s and Colitis Foundation, and The Short Bowel Syndrome Foundation
  • Find the Right Team
    Seek out a medical team with expertise in SBS and nutrition to offer you the right support throughout your journey. Ideally, this should be at a center that offers intestinal rehabilitation with a multidisciplinary team. If this isn’t possible, find out if your medical team is willing to consult with such a center.
  • Nutrition Matters
    Pay close attention to your diet. Some foods may lead to increased ostomy output or difficulties in digestion. Staying hydrated and making wise food choices are essential. Learn what works best for your specific condition and consult an ostomy nurse and an IBD/SBS dietitian for guidance.
  • Advocate for yourself
    Being comfortable advocating for yourself does not mean being confrontational. It’s about being heard, understood, and well cared for without feeling dismissed. Open communication with your healthcare team is important, especially when shared decision-making comes into play.
  • Resilience
    Day to day life with these diseases can be hard. Sometimes we have to take things day by day, hour by hour, and even minute by minute to get through the tough times. I believe that every patient is resilient. Sometimes, it’s buried, and we just need a bit of extra support to help it come to the surface.
  • Seek support
    Actively engage with your IBD community. Bowel diseases are very private and isolating, so being surrounded by others who understand firsthand what you are experiencing is very powerful. Family and friends can be supportive, but they can only empathize. Speaking with actual patients who have “been there, done that” is extremely helpful and comforting!
  • Be kind to yourself.
    Self-compassion and self-care are very important when living with the day-to-day challenges of these diseases. For example, fatigue is one of the biggest symptoms of IBD. Giving ourselves permission to rest can be hard for some of us – me included! That’s where self-care and self-compassion come in.
  • Be positive
    Lastly, it is absolutely and positively possible to live a very happy and productive life while living with conditions like Crohn’s disease and SBS.

 

[Article written by Lori Plung with support from UOAA digital sponsor, VectivBio.]

VectivBio is a global biotechnology company committed to improving the lives of people with short bowel syndrome, who rely on parenteral support (IV nutrition and/or IV hydration). VectivBio is part of Ironwood Pharmaceuticals Inc., a leading global gastrointestinal (GI) healthcare company on a mission to advance the treatment of GI diseases and redefine the standard of care for GI patients. To learn more, visit VectivBio.com.

AN OSTOMY ARMY STORY

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By Tony Plonner

Editor’s Note: UOAA is proud to recognize Veterans and supports all those now living with an ostomy or continent diversion. 

As a 20-year-old, way back in 1972, entering Army basic training was a daunting experience, the “fear of the unknown” had my mind reeling of what could happen. My approach was to take the challenge one day at a time, one hour at a time, or if necessary, one minute at a time.

We adopted many phrases to get us through the many challenges of this new environment: “Can Do!”, “When the going gets tough the tough get going” and when all else failed, “Yes Drill Sergeant!’ and we’d jump into the challenge at hand. This experience taught us we could surmount obstacles we’d never dreamed of.  Unknowingly, our training prepared us for many of life’s challenges both in and out of the military. For me, progressions to Military Police School and Officer Candidate School strengthened my confidence and allowed me to take on challenges in both the military and civilian worlds.

One basic premise I learned was to never quit.  I learned the quitter never knows how close they were to success. Whatever the challenge, you keep moving and keep fighting.

A little over thirty years ago, I was diagnosed with prostate cancer.  Surgery and radiation followed.  I kept a positive outlook and survived the experience.  Unfortunately, a couple of years ago, I was diagnosed with bladder cancer.  I was told there was a chance the radiation many years before may have led to this cancer.  As it was muscle invasive, and with a history of radiation, all the doctors involved agreed the bladder would have to go.  I had faith in my team and after a round of chemotherapy, I had urostomy surgery at the University of Miami Medical Center on March 14, 2022.

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

Having been told the result of the surgery would result in an ostomy, I researched as much as possible to learn about the side effects and the changes to my lifestyle I’d encounter. A pleasant result of this research was finding the tremendous support network available.  I learned about the Bladder Cancer Advocacy Network (BCAN) and through my old army buddy, Justin Blum, United Ostomy Associations of America (UOAA).

Tony Plonner, pictured riding the Florida Keys Scenic Highway has continued an active lifestyle after urostomy surgery for bladder cancer.

Reading case stories, with a bit of skepticism I’ll admit, I learned of the many people who have not only survived but thrived through this experience.  Along with my experience of tackling the unknown in the Army, and the great support of family and friends, these stories only bolstered my faith that we’d lick this cancer and continue with life.

My doctors regaled me with stories of ostomy patients maintaining their lifestyles, skydiving, running, golfing and barely missing a beat after surgery.  Combined with the experiences of ostomates I’d read about, was confident I’d go through the surgery and, despite new limitations expected on my lifestyle, I’d take the hill and keep on moving.

Looking back over the last year and a half I am astonished at how smooth, if that is the right word, the transition has been.  Beginning with the support of the team at the surgery center, who trained me in the care of my ostomy, I followed orders like a good soldier, paid attention to their instruction and thankfully have made the transition to ostomate.

My biggest concerns, changes to my lifestyle, were pretty much unfounded.  I am an avid golfer, road bicyclist, and generally an active person.  I was concerned about how my ostomy bag would affect these pursuits.  The answer is hardly. I wondered how I’d be able to go on bike rides of 15 or 20 miles in tight bike shorts and was pleasantly surprised to find it pretty comfortable. Also, it is easy to tell when I need to pull over and go to the bathroom.  Spandex bike shorts don’t provide much wiggle room!

Golfing also has been unaffected by my ostomy. I was worried about the twisting during the golf swing and any stress it would put on my appliance.  It hasn’t been an issue.  Now, if I could only lower my handicap…

My best advice for those about to undergo or have recently had urostomy surgery for bladder cancer is to keep the “Can Do” attitude and continue with your life’s goals. You’ll be amazed how far you’ll go.

Understanding Stoma and Ostomy Basics

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There are two main types of stomas, and they both have certain “ideal” characteristics in common. Do you know what they are?

Wound care nurses know that it’s not uncommon to hear the terms ostomy and stoma used interchangeably, even though they have different meanings.

What is a stoma?

Let’s start with the basics:

  • The stoma is the mouth-like, visible part of an ostomy.
  • A fecal or urinary stoma is composed of mucous membrane or the lining of the intestine that’s exposed to the surface.
  • Following ostomy surgery, effluent (output) — such as fecal matter, urine, or mucous — will pass through the opening of the stoma, called the lumen.
  • The patient will not have voluntary control of the effluent expelled by the stoma.

Types of stomas

There two major categories of stomas: the end and the loop.

End stoma

An end stoma is created when the surgeon brings one end of the GI tract through the abdominal wall, then folds it over. The surgeon then removes the other end or sews it shut.

In some cases, the surgeon will create end stomas from both ends of the GI tract, called a double-barrel stoma. In this case, you’ll see two distinct stomas: the proximal stoma discharges stool and the distal stoma discharges mucous. Sometimes an expanse of skin separates the two stomas, and sometimes they will share the same opening. This construction is most common for infants or very small children.

Loop stoma

To create this type of colostomy, the surgeon lifts a loop of the transverse colon through the abdomen. The colon is given a small split on the side facing out, and a rod is placed underneath for support. The rod may be removed after a few days when support is no longer needed. The proximal opening of the stoma drains stool from the intestine, while the distal opening of the stoma drains mucus. Loop stomas are usually created for temporary ostomies.

Characteristics of an ideal healthy stoma

Each stoma is unique, just as each patient’s physiology is unique. Different surgical techniques will result in stomas of different appearance. At the same time, the “ideal” stoma has some identifiable characteristics:

Moist

The inner surface of the stoma continually produces mucus to cleanse the stoma. Mucus production is a normal function of the intestines that serves as natural lubrication for food passing through the body. The mucus gives the healthy stoma a wet appearance.

Beefy red

Blood flow is essential to the health of the stoma. Normal stoma tissue is highly vascular and will appear deep pink to red. Pale pink is also normal in a urinary stoma. Stoma tissue may even bleed slightly when rubbed or irritated, which is normal. When a stoma turns pale, or dark, it means there’s a problem with the blood supply, so be sure to investigate.

Round

A round stoma is easiest to measure with circular rulers. It also works best with pre-cut skin barriers (the part of the ostomy appliance that affixes to the skin and attaches to pouch). An oval or irregularly shaped stoma may require cut-to-fit skin barriers.

The shape is affected by the type of ostomy and the individual’s body composition. The shape can also vary with the wave-like muscular contractions of the intestines, the peristaltic movement.

Budded/protruding

When a stoma has a rosebud shape (rather than flat or retracted), it protrudes into the pouching system. This allows the effluent to fall out into the pouch away from the body. The ideal protrusion is 2-3 cm with a lumen in the very center.

Strategically located

To easily accommodate the skin barrier, it’s ideal to have 2-3 inches of flat skin around the stoma. Avoid beltlines, bony prominences, skin folds, suture lines, or the umbilicus (belly button). Also, the patient will have more success managing a stoma located in an area that they can see and reach.

Stoma assessment

The stoma itself has no sensory nerve endings, which means there is no sensation for the patient. In other words, the patient may not feel pain or discomfort if the stoma becomes lacerated or injured. Therefore, your thorough clinical assessment of the stoma and the surrounding skin is essential to catching problems early.

Ostomy basics for healthcare clinicians: upcoming wound care conference session

As the third largest wound care conference in the nation, Wild on Wounds (WOW) is focused on advancing the healthcare workforce with impactful, innovative, hands-on wound care education built by and for clinicians.

This year, Joy Hooper, RN, BSN, CWOCN, OMS, WCC, AWCC, will present, “Ostomy: Basics and Beyond” which will provide a better level of understanding of colostomy, ileostomy, and urostomy surgery. The surgeries will be explained in a simple, relatable show-and-tell progression that builds on healthcare clinicians’ understanding GI tract anatomy. The presentation will include the concepts of peristomal skin protection from output and the different types of appliances available. The session will also include trouble shooting common peristomal skin common complications.

The session is intended for dieticians, nurses, and physical therapists and offers 4.00 contact hours. Learning objectives from the session include:

  • Identifying how to communicate basic ostomy care based on individual type of ostomy as it relates to a patient’s ostomy type
  • Selecting interventions to preserve peristomal skin integrity
  • Recognizing how to use ostomy products to customize fit thus promoting quality of life

WOW details

This year’s 17th annual WOW event is brought to you by the Wound Care Education Institute (WCEI) and Nurse.com, part of the parent company Relias’ family of brands. The conference will take place from September 13–16 in Hollywood, Florida. Conference attendees can choose from dozens of educational sessions and earn up to 25 contact hours for CE credits.

WOW offers innovative, interactive, and informative sessions, including simulation workshops, live product demonstrations, and a new pre-conference track with an entire day of legal sessions. Also new this year is a virtual poster hall featuring the latest in clinical research, clinical practice outcomes, evidence-based interventions, new technology, management of complex wounds, and more.

To learn more and register for Wild on Wounds, visit here.

-Natalie Vaughn, MBA, Senior Content Marketing Manager, Relias

TRAVELING WITH AN OSTOMY

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Since extra security precautions are still being taken at airports and other transit hubs worldwide, a little pre-planning and understanding of both security rules and your right to privacy can help you avoid problems in transit and enjoy your travels.

• TSA officers should NOT ask you to show your pouch—you may be asked to rub over your pouch outside your clothing so they can test your hand to rule out explosive residue.

• In particular, remember that all airport screenings must be conducted with courtesy, dignity and respect. You may request screening in a private area at all U.S. airports and most international destinations. If you encountered treatment outside of TSA protocol you can file a complaint, (please copy UOAA’s volunteer TSA Liaison gfsalamy@comcast.net)

A few additional tips to keep you on the go:

Carry a statement from your healthcare professional stating your need for ostomy supplies AS WELL AS a Travel Communications Card (which can be found here.)

UOAA's TSA Notification Card

TSA rules state that you can be screened without having to empty or expose your ostomy; however, you may need to conduct a self pat-down of the ostomy as a test.

NOTE: You may always have a travel companion with you during a private screening.

If you are traveling to a foreign country, bring this information written in the appropriate language. Google Translate may be helpful with translations. If you find you need additional supplies while traveling, a local pharmacy is a great starting point. The local pharmacist should be able to provide you with the necessary supplies and/or refer you to a local clinic/hospital for support.

Pre-cut all cut-to-fit barriers at home. Although current United States Transportation Safety Administration (TSA) rules allow curved point scissors with blades less than 4″ in length in your carry-on luggage, keeping your ostomy scissors in your checked luggage may avoid delay and extra screening

Consider purchasing travel insurance that guarantees getting you to a hospital, if necessary.

When it comes to supplies, OVERPACK! Better safe than sorry. Pack at least three days’ worth of ostomy supplies in your carry-on luggage, just in case your checked luggage is misplaced or there are delays and/or non-availability at your destination.

Drink, drink, drink. Nothing slows down a vacation more than dehydration.

If traveling by car, take advantage of rest areas. Stop and empty your pouch regularly; you never know how far it will be until the next one!

Pack ostomy-friendly snacks.

Keep a set of clean clothes handy whether in your carry-on luggage or in the trunk of your car.

Carry a few plastic bags and wet wipes for quick clean-up.

The idea of taking long trips with an ostomy can seem daunting. But with a little extra preparation, you can enjoy the trip of a lifetime.

 

Editor’s note: This blog 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.

Ostomy Surgery Saved Matthew Perry’s Life. It’s Time to Stop the Stigmas.

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Excerpts from Matthew Perry’s new memoir show that even TV stars are vulnerable to poor ostomy care and stigmas UOAA is working to erase.

By James Murray, UOAA President

(Update: People around the world have been reacting to the sad news that Perry was found dead in his home on October 28, 2023.)

In a preview of his new memoir Friends star Matthew Perry reveals to People that in 2019 his colon burst from opioid abuse and that he spent two weeks in a coma before waking up unaware that he had emergency ostomy surgery to save his life.

He reveals that ‘It was pretty hellish having one because they break all the time’ which as President of United Ostomy Associations of America (UOAA) shows me that even a Hollywood star is susceptible to poor quality of care and the ostomy stigmas our organization is fighting to end.

I had lifesaving ostomy surgery as a result of colon cancer and I am among the 725,000 to 1 million people in the United States we estimate are living with an ostomy or continent diversion. Many of us live healthy and active lives thanks to follow-up care by certified ostomy nurses, education, emotional support, and the fact that a properly fitted ostomy pouch should not break, smell or restrict your desired lifestyle.

The book also reveals that Perry’s ostomy was temporary and that his therapist said ‘The next time you think about taking OxyContin, just think about having a colostomy bag for the rest of your life.’ Perry says this was the catalyst for wanting to break his long pattern of addiction.

While it’s wonderful that Perry has fought to end his addiction, these words sting for those of us who deal with the consequences of ostomy stigmas in our society. We wonder if Perry would have come to see the ostomy differently if given the chance to attend an ostomy support group or talk with another person living with an ostomy during his 9-month recovery. Did he receive information about organizations that support ostomy patients prior to discharge? Research shows that these and other UOAA standards of care can make all the difference in a patient’s outcome.

Despite the fact that ostomy surgery saves or improves lives, there are still people who believe that death is a better choice than having this surgical procedure. People of all ages struggle with body image issues and acceptance in life with an ostomy and perpetrating these stigmas can leave deep scars.

Perry also mentions looking at the scars from his 14 abdominal surgeries as motivation for ending a cycle of addiction. Perry and those interviewing him are rightly celebrating and supporting addiction recovery efforts. We ask that they also give a moment to help raise positive ostomy awareness, and share our resources available to all those in need.

James Murray is President of United Ostomy Associations of America Inc. (UOAA) a national 501(c)(3) nonprofit organization that promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration. Educational resources, advocacy tools, support groups and more can be found at www.ostomy.org)

Donate today to help the next ostomate in need. 

Diet and Digestion with an Ostomy

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Twelve years ago, Sarah had ileostomy surgery after living for years with ulcerative colitis. Ostomy surgery has allowed Sarah to get back to eating foods she loves, and she says “it has been the best thing for me.”

Sarah now eats many of the same things she did before her ileostomy and enjoys them more than ever. Here are some tips that Sarah has learned over the years for eating, digestion and activity.

  1. Drink up. Hydration will always be an issue, so drink lots of water. I like to toss in a slice of lemon for a little extra flavor.
  2. And chew some more. If it looks the same coming out as it did going in, you need to chew those foods better.
  3. Start slow and build up. If you’re right out of surgery, you might be more sensitive to foods than you will be six months down the road. Use trial and error to see how foods work for you and be sure to track the results. If you’ve had ileostomy surgery, add high-fiber foods back into your diet gradually to make sure you can digest them well. These include raw fruits and veggies (especially with skins), nuts, seeds and popcorn.
  4. Input always makes output. With an ileostomy, your stoma is going pretty much all the time, so it’s important to track and manage your input and output. For example, if I was going on a job interview, I would not eat a big meal right before, because my stoma may create output and my pouch would fill up – and you don’t want that during an interview!
  5. Do what you love! I go on bike rides, I go boogie boarding. It may take a little time and tracking to know what works best for your body, but you can do all those things and keep your stoma safe.

Sarah, with the help of the My Ostomy Journey App, now has the ability to track everything digitally. She can also use the app to contact someone for additional support, or if she has any questions.

Sarah says, “The My Ostomy Journey app makes it easy for us to keep track of whether we’ve had enough water or what foods we eat. I wish I’d had this resource right after surgery, especially when I was first figuring out what does and doesn’t work for my body!”

 

Editor’s note: This blog 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.

Justin’s Ostomy Story: Service and Happy Resilience

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Finding Humor in life with an ostomy and IBD

My name is LTC(R) Justin F. Blum and I had my initial ostomy surgery 29 years ago and my rectum removed six years later.  These surgeries were done because of an ulcerative colitis diagnosis that lead to colon cancer.

During the 1980s, I had many colonoscopies and a litany of medications, the Army assigned me to duty stations in Kentucky, South Carolina, Birmingham AL, and Fort Monroe VA. I started with 20mg of Prednisone per day and that went up to 240mg in the fall of 1992.  During that following winter, I made an appointment with an Army gastroenterologist at Eisenhower Army Hospital, Fort Gordon GA.  After the exam, he told me I needed to have ostomy surgery. I knew what an ostomy was, I raised

Still a tanker at heart!

my voice and said, “The only way I will have ostomy surgery is if my back is to the wall and I have one foot already in the grave”. Little did I know in one year I would be having that surgery. I was bleeding profusely while taking 240mg of Prednisone per day. My last colonoscopy showed that I had a large black spot on the transverse part of my colon.

My doctor immediately scheduled me for ostomy surgery at the end of February 1993. I was in the hospital for two weeks and proceeded to convalesce at home for 30 days. Three weeks into the leave, my wife and I tried having sex for the first time as an ostomate. My bag ended up going where no bag has ever gone before and probably had a better time than we did. After some maneuvering, life did get better! I reported back to duty in Birmingham AL after convalescent leave was over. I was eventually given a J Pouch which I had for four years.

My years with IBD and now an ostomy showed me that it takes a village to obtain a good quality of life.

The next few years living with my J-pouch were horrible. Despite taking 15 hospital strength Imodium per day, I was still defecating 20 times per day. I continuously was sore on my bottom. I would develop leaks and I ended up having to wear pantyliners in my underwear. When I retired from active duty in August 1996, I immediately started my second career as an Army JROTC Instructor in Bennettsville SC. I continued to go to the bathroom quite frequently and in the spring of the following year my daughter, who was six at the time, wanted me to play horsey with her and take her around the block. I bent down half in tears and told her that “daddy can’t play horsey because he is too sore on his bottom”. I immediately went to talk to my wife and we both agreed it was time to get back to having an ostomy bag. That summer at the Columbia SC Veterans Administration hospital, I had my third surgery to restore my ostomy due to my poor quality of life with the J Pouch. On the positive side, since I’ve had an external pouch, the veteran’s administration awarded me 100% total and permanent disability. I spent the next 23 years as an Army JROTC Instructor.

By the Fall of 1997, I was ready for my first formal engagement with my ostomy. The NAACP was conducting its annual scholarship banquet and I was one of the evening’s speakers.  I made a very big mistake on the Saturday morning of the event by eating two packets of oatmeal for breakfast. I then went to a local bowling alley with my 6-year-old daughter for a birthday party. At the party, I ate too much popcorn!   That evening my wife and children attended the dinner and I was dressed in my brand-new army dress mess uniform. I was sitting on the stage at the head table when it was my time to give remarks. Once I was finished with my remarks I looked down and I thought I had spilled some water on my lap. After a closer look, I realized that that was not water but wet feces seeping through my lap. I immediately got up and my wife and I proceeded to the nearest restroom. In the men’s room, my wife was straddling me with her body trying to clean off the feces from my pouch with one hand and trying to put on a new ostomy bag with the other. During this time three individuals came into the restroom and became startled because they thought we were having sex on the floor!

From 1997 to 2002 I would experience a lot of burning, stinging, and itching around my stoma. Unfortunately, I did not have access to an ostomy nurse at any of the two hospitals where I lived in Florence SC. To my good fortune, a new assistant WOC nurse was assigned to Carolinas Hospital. I called the nurse the next day and told her about the problems I was experiencing on my skin. She immediately asked if I could come in the next day for her to examine my broken skin. That next day she examined my skin and applied Nystatin Powder to the inflamed areas. Within two days the burning, stinging, soreness, and red skin started to heal very quickly.

Despite the ostomy pouch I worked very hard my first few years and to my happiness in 2003, was named the Army Junior ROTC instructor of the year for the entire worldwide JROTC system that consists of over 5000 instructors. In August of 2010 I received a letter from Cindy Norris, Carolina’s Hospital WOC nurse who enclosed an application for the ConvaTec sponsored Great Comebacks program. The Great Comebacks program identified ostomates that also accomplished acts in their lives of giving back to others. I mailed the application back for processing. The application highlighted my time with IBD and then in 1993 acquiring my ostomy while the whole time serving my country as an officer in the United States Army. In addition, in November 2009 I was promoted to the rank of full Colonel in the South Carolina State Guard. I received a phone call from former NFL Placekicker Rolf Benirschke with the great comebacks program. He told me I would be the recipient of the Tony Snow Award for Public Service. The Tony Snow Award was annually given to an individual who has an ostomy and performed years of public service to our nation.

In 2010 and 2011 I was honored to be recognized with several awards.  I was named the 2010 volunteer of the year for South Carolina, the Tony Snow award winner, and in the summer of 2011, I was named for the second time the Army JROTC instructor of the Year. South Carolina Representative the Honorable Jim Clyburn recognized me on the floor of the House of Representatives in the summer of 2011 for these mentioned achievements while having an ostomy.

Eight years later I retired after 23 years as a JROTC instructor for a total of 44 years in uniform. My first act as a retiree was to apply to become a member of the United Ostomy Associations of America’s Board of Directors. To my good fortune, I became a board member and will have served a total of four years upon the conclusion of this tour of duty.

Justin at UOAA’s National Conference in Jacksonville , FL in August 2013. He now serves as a member of UOAA’s Board of Directors.

Over the four years, I was diagnosed and experienced neuropathy in conjunction with my ostomy. I was first put on a regimen of three 800mg tablets of Gabapentin per day which lasted six months. Not feeling any relief from the pain my doctor said we should try acupuncture. Apparently, the ears are where the acupuncture needles went because it was a central place for the pain sensors around my stoma.  I was on acupuncture for about 3 months and unfortunately, I did not see any relief. My doctor prescribed Lyrica, which is a derivative of Gabapentin. I started with one tablet per day now I am up to three tablets after two months. My pain levels have gone down considerably and fortunately I have been able to start exercising again in moderation.

My years with IBD and now an ostomy showed me that it takes a village to obtain a good quality of life. My wife Leah, who I refer to as my “Chief of Staff” is the most important person in my village. She stood by my side during four surgeries and all the years of total discomfort. In addition, if not for my caring and loving wife, I never would have gotten through the transition from non-ostomate to being an ostomate. She is my go-to person for any of my problems and she is both sympathetic and empathetic to those problems. She also stood by my side during countless tours of duty with the Army bringing her continually farther away from her home in New Jersey. Ten years prior to my initial surgery, in 1993, my father died at the age of 61 from colon cancer that spread to his liver. My ostomy surgery gave me a second chance to live because I was a prime example that ostomies save lives! If I did not have my proctocolectomy, my young wife would have become a widow with three children all under the ages of seven.

I am also most fortunate to have three WOC nurses in my life: Joy Hooper, Donna Sellers, and Joanna Burgess-Stocks. I can contact any of those three nurses at any time of the day or night, especially Joanna, if I am having problems with my ostomy/neuropathy. A healthy support system is needed for anyone inflicted with these lifetime conditions. I have learned to always look at the positive side of life throughout all those years I had IBD and now my ostomy. Today I counsel individual ostomates who are having problems adjusting to their ostomy and speak to UOAA Affiliated Support Groups around the country via Zoom and share my story and listen to theirs. Remember, you’re not alone!

Good News for Ostomates with Medicaid in Some States

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By Jeanine Gleba, UOAA Advocacy Manager

Too many people living with an ostomy have the worry that due to a need for frequent pouch changes or a high output stoma they will run out of their monthly Medicaid allowable ostomy supplies.  For the past year, UOAA has been supporting efforts, led by Coloplast, to expand Medicaid coverage of extended wear products in states with remaining access problems across the country. 

UOAA’s advocacy work has included:

  • Raising awareness on this important issue
  • Recruiting Affiliated Support Group leaders that are also WOC nurses and other local clinicians to provide clinical support and insight
  • Sending letters to state divisions of Medicaid services urging them to review the ostomy supply policy regarding coverage of ostomy supplies for HCPCS codes and quantities, specifically for extended wear products. 

As the voice and leading organization advocating for people living with an ostomy, we know first-hand how important access to ostomy supplies are for our patient population. We share the patient perspective with testimonials from advocates as well as explaining patients’ unique needs, such as those who are unable to achieve normal wear time with a standard barrier. Improved access to extended wear barriers will assist those who do not have an optimal fit or have a high-output stoma and go through more standard wear barriers and pouch changes. For these individuals extended wear products would be the prescribed solution. 

As a result of the collaboration between Coloplast, UOAA, State Home Medical Equipment (HME)/Durable Medical Equipment (DME) Associations, local clinicians and other advocates, we have expanded patient access to extended wear products in seven states as noted in the above map. This is excellent news for Medicaid beneficiaries living with an ostomy in these states! (Note: States that are grey/light blue on the map were not seen to have any state Medicaid extended wear access challenges.)

More advocacy efforts are underway in Alabama, Arkansas, Georgia, Louisiana, Maryland, Missouri, Ohio, and Wisconsin to remove the current barrier to access in those states. These states have Medicaid coverage that is much less than the current Medicare standards.

Do I Have a Parastomal Hernia?

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By Robin Glover

No need to be alarmed, but if you have an ostomy you already have a hernia! When the surgeon opened your abdominal muscles to pull your intestine through, they technically gave you a hernia. But we’re not talking about that kind of hernia. We’re talking about parastomal (peristomal) hernias. That’s when more intestine than planned pushes through your muscles and causes a bulge at your ostomy site.

You can tell if you might have a parastomal hernia by a noticeable bulge or by placing your hand over your stoma and seeing if it protrudes out when you cough. (This doesn’t count as an official diagnosis. You’ll probably also want to talk to your doctor.)

What Is a Parastomal Hernia?

A parastomal hernia is like any other hernia. They happen when an organ pushes through a weak spot in the muscle. For people with an ostomy, the organ is your intestine and the weak spot is in the same area the surgeon created your stoma.

While every effort is made to close everything and ensure a tight, snug fit, some extra intestine can force its way through and push against your skin. (This is as opposed to a prolapsed stoma when extra intestine is actually coming out of your body.)

Parastomal hernias usually happen within the first one to two years after ostomy surgery, but can occur later. While people without a parastomal hernia will tell you they’re mostly asymptomatic, those with one will likely beg to differ. Parastomal hernias can cause discomfort and pain and make it difficult to keep your appliance on.

Dealing With a Parastomal Hernia

One of the most frustrating things about having a parastomal hernia is dealing with leaks. Every parastomal hernia is unique and they come in all shapes and sizes so finding the right pouching system is important. It can take some experimenting and ordering plenty of free samples from ostomy supply companies to get it figured out.

If possible, you should also consult with a Wound Ostomy Care nurse. In fact, you should probably do this first. It can save you plenty of time and frustration. Check out this link for resources on finding one. Ostomy nurses are out there and ready to help!

Preventing a Parastomal Hernia

The best way to prevent a parastomal hernia is to listen to your doctor. When they say to not lift anything over 10 pounds for 4-6 weeks after surgery, don’t do it! You should also always be careful about what you lift and use proper form no matter how long ago your surgery was. It’s also a good idea to wear an ostomy support belt or undergarment when you’re working out or doing any strenuous activity, and to apply pressure to your stoma when you cough or sneeze.

Strengthening the area around your stoma site can help, too. But, as always, check with your doctor before beginning any sort of exercise routine. (Also, as always again, quitting smoking and/or maintaining a healthy weight can make a big difference.)

How Do You Fix a Parastomal Hernia?

Well, there’s no simple answer. Like every parastomal hernia is different, so are our bodies and the surgeries we’ve had. It will take consulting with your doctor or a WOC nurse to find a plan of action that’s specific to your needs.

But something you can do right now is find support from the ostomy community. We are a tight-knit group (and just not our sutures!) of people always eager to help and offer a listening ear.

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

Sixty Years with an Ostomy

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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.

Twists and Turns of J-Pouch Recovery

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By Robin Glover

The recovery process for a j-pouch is just that. It’s a process. It takes time and patience and is different for everyone. For some, it can be relatively easy. For others, it can be a winding path with twists and turns just like the colon that was removed for it.

But one thing is the same for practically everyone: j-pouch surgery offers hope for a return to a life that’s less encumbered by the alternatives. Seriously, who doesn’t want to poop out of their butt again if given the opportunity? Oh, and getting rid of that disease-ravaged large intestine is a plus, too.

What Is A J-Pouch?

In case you’re reading this to research information for yourself, friend or family member, here’s a quick explanation of what a j-pouch is:

Medically known as Ileal Pouch Anal Anastomosis (IPAA) surgery, it involves removing the entire colon and rectum and then connecting the small intestine directly to the anus. The term j-pouch refers to the shape of the “pouch” that’s created when the surgeon folds the small intestine on itself and creates a reservoir to hold waste until it is passed through the anus. It can also be known as an s-pouch or w-pouch based on how it’s surgically constructed. J-Pouch surgery is most often done in cases of ulcerative colitis where there is no disease in the small intestine or as a result of FAP, colorectal cancer or a bowel perforation.

The surgery for a j-pouch almost always involves two or three steps. The first step, and usually the more major surgery, is to remove the large intestine. At the same time, an ileostomy is created that will be used until the small intestine is reattached. This will be a temporary external pouch.

Stages of J-Pouch Surgery

Depending on individual circumstances, the first surgery can also involve removing the rectum and creating the internal j-pouch. However, it can also be its own separate procedure. But either way, the final step is to reverse the ileostomy and connect the small intestine to the anus. At this point, no external pouch is needed and the traditional route of passing stool can resume.

Be aware that the patient has the right to decide between a J-pouch or keeping the ostomy and should know not all temporary ostomies are able to be taken down and not all J-pouches are able to be connected.

Early Recovery From J-Pouch Surgery

It’s an exciting experience when you wake up from the final surgery and see that there’s no longer a need to have a pouch attached to you. What was once your stoma is now a still pretty nasty wound, but one that will heal and become just another proud scar.

Things won’t be working quite yet though. It will be a few days before you actually have a bowel movement. Sometimes it can take longer, but that’s not a big deal. When you’re in the hospital you’ll be monitored and well taken care of. You likely won’t go home until your doctors are sure everything is working correctly, including being able to eat and pass solid food.

Everything that comes out will still be liquid, though. It will be a little bit before you start passing anything even semi-solid. And you might not ever get to that point or only have it happen on rare occasions. There’s nothing unusual about that.

J-Pouch Guide

Diet Right After Going Home

The diet you follow after getting home from the hospital will be communicated to you by your doctor and you’ll probably go home with many guides and resources. Mainly, staying hydrated is very important and avoid raw fruits or vegetables, nuts, whole grain, seeds, or anything else that doesn’t digest in around two hours. Since you no longer have a large intestine, food has much less time to be processed and if you eat a handful of nuts they’re going to come out the same way they went down.

Check the Eating with an Ostomy Guide for a much more complete diet guideline.

But, even worse, it can cause a blockage. Blockages are the bane of a j-pouch’s existence. You need to be careful about what you eat (typically called a “low residue” diet) and chew your food thoroughly. Chew extra. And then some more. Take small bites and don’t take any risks right away. Introduce new foods slowly.

NOTE: Your doctor or dietician will know the best foods to eat and what to avoid for your specific needs. Always follow their directions before anything you read on the internet.

Getting To Know Your J-Pouch

It can take a while after surgery to completely adjust to your new plumbing. You’ll learn what foods are “safe foods” and which to avoid. You’ll also learn about how your j-pouch behaves and how it affects your daily life.

For example, you’ll start to get an idea of how many times per day you’ll go to the bathroom and what consistency you can expect. You’ll also learn what each sense of urgency means and when you need to go to the bathroom right away and when you can hold it. It will feel like you need to go to the bathroom a lot and you’ll probably actually need to at the beginning. But, over time, your j-pouch will stretch and grow to be able to hold more before needing to be emptied.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

You’ll Experience Butt Burn

Speaking of going to the bathroom a lot, you may experience what is known as “butt burn.” This is because, on top of going to the bathroom more often, without a large intestine your stool will be much more acidic from digestive enzymes.

It’s necessary to take special care and make sure everything is extra clean. A bidet is a great idea because rubbing with toilet paper can also cause irritation. There are also many creams and lotions you can use to soothe and protect. Zinc-based lotions are a good place to start. And get some disposable gloves while you’re at it.

You may go to the bathroom up to 20 times a day (or more) and experience irritation from going so much. But, it will get better as you learn more about your j-pouch and develop processes that work best for you. In the end (no pun intended), you’ll get to a point where you’re comfortable and know how to manage it like an expert.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

It’s Not Always Easy

As mentioned, j-pouch recovery is a process. At the beginning, there will be accidents (typically nighttime) and discomfort. It’s a whole new way of digesting food and your body needs time to adjust. And you will need time to adjust to it too. It’s a major change.

Be aware of possible complications such as pouchitis and tell your doctor if you have more frequent or blood in your bowel movements.If you have a j-pouch or need one, you’ve already been through a lot. You know you’re resilient and can make it through almost anything. This is just another step in your journey.

Don’t let any of this discourage you. There’s a reason you decided to get a j-pouch and there’s a wealth of resources and support out there to help. Everything you will experience has been experienced before and the j-pouch community is always ready to help. But keep in mind that social media is often a place to vent so you might see more negative than positive posts.

So focus on the good, be patient, and look forward to enjoying pooping out of your butt again!

 

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

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