Surviving colorectal cancer, reversal complications, and living with faith & perseverance

In June 2018, Osmani Gonzalez began a new exercise program to help him lose weight and kickstart a healthier lifestyle. Two months into his new routine, the then 42-year-old began to experience abdominal pain. Gonzalez assumed it was due to his workouts, but the pain foreshadowed a much more severe issue.

His discomfort only worsened over time, and in August 2018, Gonzalez, who was born in Havana, Cuba, and raised in Hialeah, Florida, was rushed to a nearby hospital with a swollen abdomen.

To alleviate his pain and to clear an obstruction in his colon, he underwent surgery for an ileostomy. During this procedure, surgeons build an opening in the abdominal wall by bringing the end of the small intestine out onto the surface of the skin, creating an opening for his intestinal waste to pass through into an ostomy bag attached to his abdomen. Unfortunately, the news that came after his procedure was not favorable – Gonzalez was diagnosed with Stage 2 colon cancer.

He cried along with his wife of 23 years Aleida, and despite not knowing what they were getting into remembers them saying, “We are going to fight it, good or bad we will try our best.”

Gonzalez thinks patients should also find time to have empathy for others. “It’s so important to understand the caregiver and ask how they are doing and to never forget that they are going through similar things,” Gonzalez says. He received 12 sessions of chemotherapy for six months. While in the hospital for treatment during the Christmas Holiday Gonzalez, who is an advocate and speaker for father engagement in K through 12 education and active in several area PTA’s where he raised two children, had an idea to bring some cheer to fellow patients by having local children draw cards of support to his fellow patients.

Gonzalez’s cancer went into remission and was told he no longer needed the ostomy.

In February 2019, Gonzalez underwent reversal surgery. However, three days after the procedure, he woke up in horrible pain, and a CT scan revealed there was a leak in his intestine and his staples had come undone. After the blood system was contaminated, Gonzalez was diagnosed with sepsis shock and had to undergo another surgery to have an ileostomy again. Afterward, Mr. Gonzalez was put in a medically induced coma for 18 days.

“At that point, my wife was given very little hope and was told just to pray and prepare for the worst,” Gonzalez said.

When he woke up from the coma, he began occupational and physical therapies and was on an IV drip to help alleviate his constant dehydration. Gonzalez learned to walk and perform basic physical activities. He used a wheelchair for more than three months while he recovered.

Even with the support he was receiving, Gonzalez’s kidneys began to fail. During one of his many trips to the ER, a gastroenterologist suspected he was suffering from short bowel syndrome, a condition in which your body is unable to absorb enough nutrients from the foods you eat because you do not have enough intestine.

“We all have downs and need motivation. Whatever it is you grab onto, you have to have a why and decide to live.”

Gonzalez was rushed to the Hospital’s emergency department and referred to a well-known trauma surgeon and surgical critical care specialist. “He came weighing 176 pounds, and in six months, he kept losing even more weight,” Gonzales recalls the doctor saying. “We only had 125 centimeters of small intestine to stabilize him.”

For Gonzalez to get better, the Doctor placed him on Total Parenteral Nutrition (TPN) so his body could receive the nutrition needed to strengthen his intestines. Over the next two years, Gonzalez continued receiving TPN and seeing the Doctor biweekly, undergoing continuous lab work to monitor his progress.

Despite frequent challenges with ostomy leaks and TPN he would go out fishing and continued to push himself to do things he loved. He remembers one time after a shower attempting to stop an active stoma with his hand and making quite a mess, “My wife just said it’s better laughing than crying,” he recalls with a smile.

On June 25, 2021, he was taken off the TPN and underwent a successful reversal surgery to repair his intestines, clean up scar tissue, and remove the stoma.

On July 9, he went home with a feeding tube and by September 13, he was on a regular and independent diet. His doctor told him, “He’s been one of the most optimistic patients I have ever cared for.”

While going through this medical journey, Gonzalez had to reduce his workflow with his construction company to focus on his health. Mr. Gonzalez is currently enrolled in a program slowly allowing him to join the workforce again. He has been working in construction management and is gradually entering a more active lifestyle.

“I look at life differently now. My focus is improving daily and being more involved in my kids’ lives,” Gonzalez said. “I’m extremely grateful to the Doctor and my care team at the hospital for performing this miracle.”

Gonzalez has expressed what a blessing it has been to have met Lynn Wolfson of the South Florida Ostomy and Tube Feeding/HPN Support Group, which provides support and comfort to other ostomy patients and guides patients through their journey of living with these conditions.

Gonzalez recently had the chance to share his story with the group and UOAA followers around the country on a Zoom presentation. He stressed the mental aspects of recovery and looking beyond day-to-day challenges.

“Keep pushing and do what you love, sometimes even when you don’t want to do something, once you start the process your feelings change,” Gonzalez says. “We all have downs and need motivation. Whatever it is you grab onto, you have to have a why and decide to live.”

By Sarah Biggart (Convatec me+™)

Frequently I speak to callers about the challenges of caring for an ostomate with memory loss. Often time, people who were previously self-sufficient, independent ostomates become pre-occupied with their pouch; sometimes even pulling on it, which could cause numerous issues1,2.

This could be in the future for some of us, and a reality some caregivers are facing now as they care for and support loved ones.

If you are assisting a loved one, and you see them tugging, pulling, scratching or playing with their appliance, the first thing you should consider is that there may be a reason for this behavior. Their peristomal skin may be itching or burning, or they might be experiencing pain or discomfort around the stoma3. For someone who may have trouble communicating, this could be their way of letting you know something is wrong.

If this is a new behavior, contact your local ostomy nurse or healthcare provider. It’s important to rule out any medical issues they may be experiencing.

If the issue is determined to be purely behavioral, we have some suggested tips and tricks that may help as you care for and support your loved one.

Pouch Change Tips1,2,3:

  • Create a safe, relaxed environment. Take your cues from your loved one considering where they are the most comfortable. Maybe instead of standing in the bathroom, try laying down on the bed with soothing music or a favorite show playing in the background.
  • If evenings can be tough, a morning pouch change before eating breakfast may make more sense for you.
  • Keep ostomy supplies organized and clearly labeled for people who may be able to handle pouch changes independently or for rotating caregivers.
  • Use a calendar or the My Ostomy Journey App to track pouch changes. Do not wait until there is a leak to change the pouch. A leaking pouch may contribute to skin breakdown issues.
  • It may be necessary to store pastes, powders and sprays securely, as patients may attempt to tamper with or ingest these items.
  • Try ostomy accessories designed to simplify pouch changes.

Daily Living Tips1,2,3:

  • Many people with memory loss find comfort in routine. Find a rhythm to ostomy related tasks, such as emptying the pouch, and use the same verbiage each time to bring familiarity. Coordinate with the entire care team to ensure everyone is aligned with using similar language and prompts.
  • Staying occupied may help with keeping hands away from the pouching system. Things like puzzles, sorting items and folding something, may be just the thing to help.
  • Try an Ostomy wrap. Employing the “Out of Sight, Out of Mind” principal, a wrap helps to keep the pouch concealed and supported. A good ostomy wrap is made from a soft and stretchy wicking fabric and helps to keep sweat and moisture away from the skin and the wearer cool and comfortable.

Feeling isolated while providing care for loved ones is a common challenge, we encourage utilizing groups for ostomy support.

And remember that caregivers need care too. You may find comfort in your local Ostomy Support group Find one near you on the UOAA support group finder: https://www.ostomy.org/support-group-finder/.

 

Ruth and her family were confused and stressed when they had to take on the care of their 99-year- old mother’s ostomy.

“My mother has had a colostomy for nearly 60 years. She is now 99 years old with dementia, but had been independently keeping up with her stoma and pouch until just a few years ago. When family members started taking on the task of assisting her, we had to scramble to get up-to-speed since we never paid attention to the details of changing her “appliance” or emptying and re-closing the pouch.”

Ruth connected with me+™ to learn more about how to use ostomy products and accessories, and received follow up product samples and ongoing support.

“Erica was compassionate, truly listened to the problems we were encountering with my mother’s situation, and suggested products that addressed each of those challenges. The bottom line is Erica made me feel supported in my mother’s care, and that she cared that our family wanted my mother’s quality of life upheld when other healthcare providers wrote her off due to her age and mental condition. Erica contributed to us honoring my mother’s wonderfully rich and productive life at a time when that’s not evident to a stranger’s eye. We are so grateful for the support we’ve received through Convatec’s me+ Clinical Support Nurse Team.”

 

If you have questions about product sampling or nurse support available through the me+™ program, please contact us at 1-800-422-2211 or cic@convatec.com.  We look forward to helping you soon.

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.

References:

  1. DementiaUK, Caring for a person with a Stoma and Dementia. https://www.dementiauk.org/information-and-support/health-advice/caring-for-a-person-with-a-stoma-and-dementia/. Accessed November 13th, 2023.
  2. United Ostomy Associations of America, Inc, Dementia Stoma Care. https://www.ostomy.org/dementia-stoma-care/. Accessed November 13th, 2023.
  3. McGrogan M. How holistic assessment and appropriate product selection will enhance quality of life for ostomates with cognitive impairment. WCET® Journal 2021;41(1):33-35

Among the general public there is still a perception that people living with an “ostomy bag” or pouch are older seniors or at least middle-aged. Those searching on social media however will soon discover that younger people with an ostomy are not only  visible, but sharing and embracing “ostomy life” in a whole new way.

Allison Rosen and friends at the Waterwall Park close to the Royal Sonesta Houston Galleria, the site of the UOAA 2023 National Conference. 

Many young adults with an ostomy have never had the opportunity to meet another person they could truly relate to.

What if there was a place where online ostomy friends could meet in person, socialize, laugh, cry and just be together? Well, that place is UOAA’s National Conference August 10-12, 2023 in Houston, Texas.  

Attendees of all ages will get to experience a large ostomy product exhibit hall and sign-up to sample products and see a WOC nurse at the free stoma clinic. Former Miss Texas and current J-Poucher Magen Cherry will provide the keynote welcome. 

Ostomy experts will also speak and be on hand to answer surgery-specific questions for people with an ileostomy, colostomy, urostomy, j-pouch or continent diversion. Young adults, along with Caregivers, IBD Patients, LGBTQ+, and kids/parents will be offered even more specialized sessions and tracks.

Young Adult Track 

After its successful debut in Philadelphia, the Young Adult Track is back for this year’s conference! Designed for ostomates in an earlier stage of life, the track features topics like, dating and sexuality, body image, managing school/work, navigating parenthood, exercise, and staying active all while juggling ostomy care and other chronic health conditions. 

Sessions range from formal presentations and panel discussions to off-the-cuff conversations and opportunities to connect with fellow young ostomates. The Young Adult Track offers participants the opportunity to learn new things while forming friendships and bonds that extend well beyond the weekend of the conference.

”If you’re looking for peers in your age range who truly “get it,” look no further — we can’t wait to see you in Houston!” says co-organizer Molly Atwater-Pulisic (Molly Olly Ostomy). The young adult group typically meet informally after hours in the hotel lounge and go on city outings together as well.

You’ll want to stay at the Royal Sonesta Houston Galleria to not miss out and be close to all the action. A special UOAA group rate is available. 

The young adult track is awesome, because we make fast friends and are able to relax and talk openly and casually about personal, ostomy-related topics that are sometimes difficult to share with people in our usual daily lives. -Nate Hadlock

Local Houstonian and ostomy advocate Allison Rosen is helping to plan a Texas themed evening of line dancing, drinks and desserts. “I am looking forward to meeting virtual Ostomy friends in person for the first time! Meeting others who understand I know will be life changing!” Rosen says. 

Young Adult Track attendees will have a dedicated meeting room starting with a meet and greet on the morning of Thursday, August 10 ending with FAQs Saturday afternoon before the closing party. A special Friday night gathering just for the Young Adults is also being planned with track sponsor Hollister. 

If this all feels a bit overwhelming don’t worry you’ll be embraced with open arms. Unofficial social chair Alyssa Zeldenrust has made it her mission to greet and connect young ostomates since first attending the conference in 2011. In a testimonial video she shares why she keeps coming back. “All of us are on our second chance at life, so it’s extra special to all be together and it’s a very joyous atmosphere.”

She’ll also be speaking on Ostomy FAVE Things along with other conference veterans Chloe Moody and Nate Hadlock.

“I’ll be sharing tips, “tricks”, and experiences that have helped me through my medical journey. As many ostomates have done for me since my first conference in 2017, this year my goal is to help others feel welcome and have breakthroughs of their own,” Hadlock says.

Those active on social media may see some other familiar faces such as Kristen Furey, The Furey Fighter. “I’m excited to share my journey with Advocacy and what it has done for me in terms of growth and acceptance with an ostomy!” Furey says. “I am most looking forward to attending my first UOAA ostomy conference and being around so many other people who have similar health conditions and an ostomy! Knowing they have walked the same journey that I have and hearing from them firsthand their experiences with an ostomy!”

Speaking on Parenthood it will also be the first conference for Meghan Brown (@EMC_Brown)  “I am most looking forward to meeting longtime ostomy friends and experiencing my very first conference, as well as hearing some of my closest ostomy friends speak!”

“For my talk, I’m excited to share more about my experiences of pregnancy with an ostomy and what life looks like now with a very curious three year old and wild 20 month old. I’ll shed a little light into the funny but important conversations I’ve had with my three year old about my ostomy, and how we maintain an open dialogue around all things ostomy.”

Molly Atwater-Pulisic will be joined with Collin Jarvis in leading many of the other topic discussions. Check out the full conference schedule. Young Adults between the ages of 18-25 get the special price of $135.00 for all three days. 

Caregivers Track

Partners or caregivers of ostomates are also encouraged to attend UOAA’s National Conference this summer. Register and you’ll be welcomed for all the social events and food and drink opportunities and receive access to the informative Exhibit Hall.

Special sessions are also exclusive to caregivers on Friday August 11. 

The Caregivers Track that morning will feature a Caring for a Male Rap Session and a Caring for a Female Rap Session. 

An important session on Caregiver Stress – How to Cope will be available that morning a well. 

Pediatric Track

The youngest of ostomates and their parents/caregivers will also have a special track at the conference.. This day-long  program is held on Saturday and will be led by pediatric WOC Nurses and ostomy parents. 

Some session highlights include: 

Advice from an Ostomy Parent with Julie Hubbard

Dietary Considerations in GI/Ostomy Patient with Erika Kay, RDN, LD 9:15am to 10:30am Ask the Expert: Gastroenterology Care of the Pediatric IBD Patient with Dr. Allison Wyatt 

Ask the Expert: Surgical Management of the Pediatric IBD Patient with Dr. Rueben Rodriquez

Ostomy Complications and Pouching Techniques with WOC Nurse Maryanne Lewis

Ask the WOC Nurses with Barbara Richardson, Erika Guidry and Sharon Wallace

Exercise and Activities for Children with Ostomies with Tenille and Rebekka Smith

Children between the ages of 5-17 are just $25 and the one-day rate for parents is $125.00

Volunteers from around the country are working hard to create a life-changing experience for the young ostomate community. Register by May 31st to get the early bird discount. Please spread the word, invite a friend and discover your people this August in Houston. 

 

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

By Ellyn Mantell

We are at that stage of life where so many in our world are dealing with issues that require care. All are in shellshock! Those who require help were frequently the backbone of their family, their community, their businesses, and suddenly, they need care.  Family members are called upon to play a different role, that of becoming the caregiver with little to no preparation. It rattles everyone, can separate and cause feuds in families, and can go in a very negative direction. But if everyone has their eye on the prize, that of supporting the one in need, there will be an amazing sense of camaraderie, and I believe, much more success. Now, more than ever, people need each other.

I want to share some thoughts with you in the event you or someone you know finds themselves in this situation:

  • Help to create a plan of action, logically and without emotion. Remember to focus on what is best for the patient (or one in need, but we will refer to them as patient) Ask professionals for guidance, but let them know your resources, financially, personally and physically. Bravado doesn’t have a place here…be open and honest. Nobody can do it all, and nobody expects that.
  • Bring family and close friends together and have open conversations about the direction being planned. It is dangerous to assume you know what others are thinking, and it is subterfuge for others to talk without involving you directly. Make it easy for family and friends to come to you, and do not put up a wall. Nobody benefits when that happens and too much time is wasted! Listen, gather information, keep an open mind, and then feel empowered to make decisions.
  • Keep a journal of what is happening to your loved one and yourself. Being mindful of the experience and noticing how you are growing and changing is valuable. It will help with each step you take. These things are most often a process, and not “fixed” on the schedule we desire. Additionally, for the patient, knowing what tests have been performed, the results, in one place, can be invaluable.
  • There are many resources available, but it is a minefield for those who are dealing with the patient. Ask a valued friend or family member to make calls on your behalf or help them navigate the internet. As an Advocate, I receive countless phone calls from family members and friends asking for my guidance. I praise those who reach out on someone’s behalf, and know the patient is so fortunate to have that type of loving concern.
  • Finally, although I could continue for pages, take the Caregiver to lunch, do something special for them, acknowledge all they are doing and the amount on their plate. Call, reach out and do what you can. This is such a trying time, and certainly, we are all aware of our vulnerability. Pay it forward and watch how it helps.

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. This post first appeared on her blog More Than My Ostomy.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This article was created by Takeda.

 

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A research study about the benefits of perioperative self-management support for ostomates

 

Ostomates are not only dealing with intestinal concerns but are also at risk for a multitude of complications. Data shows that 38% of ostomy patients find themselves back in the emergency room or being admitted within the first 90 days post operatively [1]. This is one of the highest rates of readmission when compared to other types of surgery. The most common cause for re-admission is dehydration, at approximately 40% of post ileostomy readmissions [2]. We also know that 84% of ostomy patients develop skin issues. The causes of these can be chemical, mechanical, or microbial, and possibly avoidable. Ostomates also have significantly increased healthcare costs, especially when affected by peristomal skin complications, and leakage [2]. It is known that 25% of ostomates develop renal failure within two years. The complications these patients encounter require 7x more outpatient visits than the average patient. And 29.1% of ostomates experience readmission which costs approximately $16,000 per patient [1]. These statistics show that specialized care for these patients is imperative to improving patient outcomes in this patient population.

A recent study published by the American Society of Colon and Rectal Surgeons shows how one company, 11 Health and Technologies, is utilizing a novel care approach to improve the quality of life and outcomes in this type of patient. The company developed alfred: SmartCare, a unique care model designed to meet the specialized need of ostomates. The program consists of a SmartBag and SmartWafer, mobile application, patient coaches (who were/are also ostomates, trained to support this type of patient) and the nursing team. The patient wears the SmartBag and SmartWafer, which submits data to the mobile application and clinical dashboard. The data is visible to the patient, their coach, the nursing team and the patient’s clinicians to be used to identify trends and abnormalities in the values. The patient can see how much output they have expressed and what the temperature is of their peristomal skin. These data points can help to curtail oncoming hydration issues or infections. When abnormalities are identified, the coach can work with the patient to provide education and can escalate issues to the nursing team for medical guidance.

In the study, the outcomes of 66 new ostomates from 19 different states were monitored for the first 30 post-operative days. The study showed that close monitoring of ostomy output volume as well as perioperative self-management support can significantly reduce the rate of hospital readmissions in the first 30 days after ostomy surgery.

Patients and healthcare providers should be open to the use of innovative programs that use remote monitoring along with telehealth, as they can be beneficial in improving the outcomes of patients in the immediate post-operative period.

To read the full study, visit the Diseases of the Colon & Rectum online at: https://journals.lww.com/dcrjournal/Citation/2020/12000/Improved_30_Day_Surgical_Outcomes_in_Ostomates.17.aspx

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

[1] Tyler, J. A., Fox, J.P., Dharmarajan, S., Silviera, M. L., Hunt, S. R., Wise, P. E., Mutch, M. G. (2014). Acute health care resource utilization for ileostomy patients is higher than expected. Diseases of the Colon & Rectum57(12), 1412-1420.

[2] Justiniano, C. F., Temple, L. K., Swanger, A. A., Xu, Z., Speranza, J. R., Cellini, C., Salloum, R. M., & Fleming, F. J. (2018). Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors. Diseases of the colon and rectum61(11), 1297–1305. https://doi.org/10.1097/DCR.0000000000001137

[3] Taneja, C., Netsch, D., Rolstad, B. S., Inglese, G., Eaves, D., Oster, G (2019). Risk and economic burden of peristomal skin complaints following ostomy surgery. Journal of Wound, Ostomy and Continence Nursing, 46(2), 143-149.

[4] Fearn, Robert I. M.D., M.R.C.P.1,2; Gorgun, Emre M.D.3; Sapci, Ipek M.D.3; Mehta, Saahil N. M.D.2; Dinh, Binh B.S.2; Yowell, Quinn V. M.S.2; Eisenstein, Samuel M.D.4 (2020). Improved 30-Day Surgical Outcomes in Ostomates Using a Remote Monitoring and Care Management Program: An Observational Study. Diseases of the Colon & Rectum: December 2020 – Volume 63 – Issue 12 – p e581-e586.

A Journey From Caregiver to Student, Ostomy Patient, and Nurse

My name is Jennifer Borchek, and I am a recent graduate of Chamberlain University with a Bachelor of Science in Nursing. I am a licensed registered nurse. I also have a colostomy. While I know that my condition changed a part of me, I also know that it has never defined me, my career choice, or who I have become.

A Career Path of Care

My passion for nursing stems from the love and care that I showed for my ailing grandmother during her time of need. My grandmother suffered from many health issues that demanded around the clock care. At the age of 15, my mother and I became the primary caregivers for my grandmother, so we relocated into our grandmother’s home to care for her as her needs increased. This responsibility was not something I took lightly. I spent many nights rushing down the stairs to my grandmother’s bedside when I would hear the slightest sound that might mean she needed attention. Eventually, the running up and down the stairs and the weight of my worry became too much; I picked an empty spot on the floor near my grandmother where I would sleep with one eye and ear open. By the time I graduated high school, I had developed a good sense of care and a strong interest in continuing my path in health care. I decided what better way to use my experience than to become a certified nursing assistant?

After my certification, I attended a local community college to complete my general education requirements and earn an Associate Degree of Science with honors. This brought me closer to my dream career of becoming a nurse. During this time, my grandmother passed away, and I took a break from school to work in a nursing home. My caring nature was fulfilled at my job by helping others know that their loved ones were well attended to. While working in this environment, I knew I could achieve more, and I decided to apply to nursing school to begin my path as a registered nurse. Soon after, I was accepted into a Bachelor program for nursing. I knew that it would be a challenge to continue my education, as balancing school, work, and family could be difficult, but I also knew that my dream and ambitions were strong. I was ready to face the academic and scheduling challenges ahead, but I was not prepared for the unexpected health issues that I encountered along the way.

A New Path with a Slight Turn

One day, while walking between classes, I started to feel a nagging pressure in my genital area. It became sporadic and seemed to have no pattern or reason for occurring. It would oddly come and go regardless of what I was doing at the time. I thought it would just go away, but it persisted. I spent countless months going back and forth to the gynecologist with the same concern. Consistent medical testing provided no reasons for the pain. For more than a year, I felt as though I was wanting and eventually begging to be heard by the doctor. Examination after examination, I started to think that maybe this was all in my head, and at times some doctors and nurses suggested that too. This was eventually disproved one evening when I felt a sudden burst of blood run down my legs after a hot bath. I rushed to the emergency room only to be told that I was “fine” and to follow up with my gynecologist. I went home that night heartbroken and confused; how could this not be enough to diagnose my health issue? So, yet again, I booked another appointment and headed over to the gynecologist’s office that I’d been to so many times before. After I was examined, the doctor removed her gloves, looked at me and said, “This is not your vagina anymore; this is your rectum. Go to the colorectal surgeon and tell them that you’re bleeding.” She walked out of the room without saying another word. I couldn’t even begin to comprehend what she was saying. Why would I need a surgeon? What does a colorectal surgeon have to do with my vagina? I was filled with a furious, confused, frustrated rage, and I was scared. I left with more questions than I arrived with, and now I was heading into unfamiliar territory. Did I have cancer? What kind of surgery would I need?

I later booked an appointment with a knowledgeable and focused colorectal surgeon at a well-respected teaching hospital. It took three very long weeks for my appointment date to arrive.

Diagnosis over Despair

I met the colorectal surgeon and he told me I had to be diagnosed under anesthesia. He suggested it was an anal fistula during the initial appointment. I was not sure what this diagnosis meant or how it happened, but in all, I liked and trusted this doctor. I felt as though I finally found someone who understood what I was going through and could diagnose what I had been complaining about for over a year. I scheduled the procedure during my one-week break from school. I liked that the doctor not only respected me and my concerns and feelings, but I also appreciated that he was very understanding of my desire to become a nurse. He helped me understand that my condition would not prevent me from living a normal life and achieving my degree.

Weeks later, I underwent anesthesia to be diagnosed. My surgeon told me after that I needed more surgeries to treat my newly discovered health issue. I had a rectovaginal fistula and he informed me that I had had it for at least five years. He also stated there was no exact reason why I had developed a fistula. While this made complete sense looking back at all my symptoms, I still cried when I heard this report. Suddenly, all the missing pieces were finally fitting together.

I had a diagnosis, but this was not the end of my battle. I underwent six separate surgeries all while maintaining honors in nursing school. The most recent was my ostomy surgery. During this time, I dropped down to only taking one class and had been unable to work a career-related job because of my health needs. The hours of studying were long and strenuous, but I fought through recovery one day at a time. Hauling heavy books and running from class to class were no longer a part of my day. Healing was just as important as learning, and I managed to balance the two. I often studied while soaking in the bathtub, as this was the doctor’s order to help the healing process.

During the increased workload of nursing school, I met two very caring friends, Laura and Bert, who helped me along the way. They were there for me when things got rough and made sure I didn’t fall behind in school during my health obstacles. I asked for health-related accommodations and was able to have Laura and Bert with me in every class and during clinical. This was a way to be sure that I would have the support and care if necessary. As a new ostomate, I knew anything can happen spontaneously. Having caring and trusting friends nearby encouraged me to relax about my condition and focus on my studies.

More Frustration, but Still Focused

Throughout my path, I was somewhat saddened to learn that ostomy surgery was a necessity. I understood that my fistula was not healing with the multiple surgeries that were performed, so the ostomy became a part of something I learned to accept. Even now my focus is to heal, rather than stress the need to reverse my ostomy before my fistula has completely healed. I was informed by my colorectal surgeon that rushing the process could result in the same challenges I had when I started my journey.

Jennifer with her close friend Jenell, left, whom she met at a UOAA Affiliated Support Group Meeting in Illinois.

Finding Friendship and Support through the Flaws

During my hospital stay for my ostomy surgery, my Wound, Ostomy and Continence (WOC) Nurse informed me that the Loyola University Medical Center held monthly ostomy support group meetings (One of 315 UOAA Affiliated Support Groups in the U.S.) and that she thought it would be beneficial for me to attend. She mentioned a young woman around my age who had recently had surgery. I thought it couldn’t hurt to show up.

I hoped to gain tips on care, products and living life differently with what seemed to be a flawed digestive system. I had already researched some of this online and in magazines, but I decided that more information could not hurt. Three weeks after major surgery, I walked through the door of the meeting room, still in pain and feeling a bit awkward about the whole thing. I sat down behind the youngest person in the room. She turned around and immediately greeted me with a friendly smile and introduced herself and her mom to me. She is in her late 20’s, her name is Jenell, and her stoma’s name is Piglet. Suddenly, I didn’t feel so nervous when Jenell asked why I came to the meeting. When I told her my story she said that it was unlike any story she had heard before. We spent the rest of the meeting talking about all things ostomy. We exchanged telephone numbers after the meeting and quickly became good friends.

Jenell eventually shared her own story with me and the story of naming her ostomy. Most ostomates feel naming their stoma helps them accept the transition of having an ostomy. With Jenell’s encouragement, I named my stoma “Rosita,” symbolizing that an ostomy reminds me of a rose. Jenell has helped me in so many ways by encouraging me about my health condition; she gave me confidence and showed me that even though my body changed, it doesn’t mean I changed as a person. She also taught me how to handle certain situations. For example, because of our invisible illnesses, we feel the need to educate the public on unseen chronic physical conditions. Together, the four of us – myself and Jenell and our stomas, Piglet and Rosita – make quite a team. We have a lot to be concerned about, but we also have a great future and much to be thankful for. We’ll face more challenges, but we’ll do it together.

My own experiences have helped me decide that I want to become a WOC Nurse and tell others with the same condition that they also can live a normal life. I want to help others with the transition of becoming an ostomate. I want others to know that they can follow their dreams, share their successes, lead by example, and show care from their experiences. I decorated my graduation cap to celebrate my decision and I included Rosita in my design to recognize that I have successfully overcome my challenges, and to show my ostomy is part of me and part of my future.

I am ecstatic to be sending out applications to be hired as a registered nurse because I never thought this day would come due to all my uncertain health issues. However, I will have to wait until my next surgery and through recovery. I know I’ll get there eventually because my challenges will not stop my dream!

Appreciation

All in all, I am very grateful for those I have in my life who have supported me: for Jenell for her friendship, for my surgeon with his knowledge and talents, for the WOC nurse that helped me get through my transition of being an ostomate, for my instructors for teaching me so well, for my classmates Laura and Bert and all the support they gave me, for Rosita for being so accommodating of my ongoing issues, and most importantly for my mother to whom I attribute my success. She encouraged my caring nature, has kept me strong and motivated, has lifted me when my spirits were low, and she is the reason I have fought so hard to become a registered nurse!

By R.S. Elvey

Caring for an ostomy can often be a frustrating and challenging experience at any age. But combine advanced age and dementia and it becomes even more of a challenge for caregivers and loved ones. According to the Population Reference Bureau, the number of Americans 65 and older will gradually increase from 15% of our population to 24% by 2050. With this growth has come a rise in existing and new ostomies combined with Alzheimer’s or other dementias. The Alzheimer’s Association of America reports in their 2017 Alzheimer’s Disease Facts and Figures report, “Of the estimated 5.5 million Americans with Alzheimer’s dementia in 2017, 5.3 million are age 65 and older.” The association predicts a half a million new cases of Alzheimer’s dementia will develop annually.

This explosive growth in new cases of dementia is putting an enormous strain on family caregivers. The Family Caregiver Alliance estimates, “44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in the community.” These caregivers often have little or no preparation or support in providing care for people with disabilities such as stoma care. They become frustrated and worn out. In an online forum, an anonymous writer expressed her frustration about caring for her mother’s stoma as follows, “I am TIRED of it. I need someone to take over dealing with an ostomy and ordering the correct supplies for her, etc… And I am just going to make whatever decisions seem right regarding her bladder care, as I find out more info. I really wanted to yell at her tonight and that makes me feel like a terrible, awful person. I didn’t, but I did get a little firm.”

Studies have shown that family caregivers who provide care to family members with chronic and disabling conditions are also putting themselves at risk of developing emotional and physical health problems. When seeking stoma care information, caregivers often participate in online chat rooms and forums for anecdotal advice. Additionally, visiting nurses with wound and ostomy training often make home visits and teach ostomy care. But when they leave the caregiver is often faced with ever-changing challenges as their loved one’s dementia worsens. Most often they face the challenge of not knowing when a pouch needs to be emptied, appliances being ripped off by their loved one or attempts to empty and change the appliance that miss the mark and require massive cleanups.

Realizing the complexity of stoma care and dementia and the pressure it causes to caregivers, the Colostomy Association of the United Kingdom and the Dementia Association of the United Kingdom combined to issue a twelve-page downloadable leaflet at www.dementiauk.org entitled, “Caring for a person with a stoma and dementia”. They readily recognize that not all persons with dementia will profit from learning to care for their stoma. But where it is possible a person should be encouraged to participate in their own stoma maintenance.

The leaflet’s content is based on input from health professionals who care for ostomates with dementia and a stoma. A few of the hints and tips included in the publication are:

  • “People with dementia who are actively involved in changing their bags should be encouraged to wear gloves. This reduces the risk of infection, feces under the nails and fecal spreading.”
  • “Some people with dementia who require their bag to be changed for them might resist. In these cases distraction could help. For instance, encouraging the person to clean their teeth or brush their hair during the process might be helpful. Standing the person in front of a mirror so they can focus on the task they are performing and not the bag change can help.”
  • “Bag choice is important. One-piece bags with pre-cut aperture have the advantage of being uncomplicated for both person and caregiver. Two-piece bags, where the flange can remain in situ for up to three days, helps protect the skin where frequent changes are necessary.”

Individual and professional caregivers also provide additional advice based on their experiences. Many staff who work in nursing homes put a plastic bag over the pouch so that in case of any leakage, there won’t be a much larger incident. Many persons with Alzheimer’s or other dementias either pick or rip off their pouches. To prevent this from happening, many caregivers dress their loved ones in special clothing that has no openings in the front but still gives the appearance of normal clothing. One source for this type of clothing is Buck and Buck. Their online catalogue features adaptive clothing by gender and condition. Lastly, in this smartphone age there is even an app that might help. 11 Health has created the Alfred Alert Sensor. The sensor is applied to the pouch at a point where it should be emptied. When that point is reached it connects by Bluetooth wireless technology to the Alfred Alert app on your smartphone to tell you it is time to empty. The app can also capture patient output volume over a period of time. The data is stored in a HIPAA compliant cloud server where it can be shared by medical professionals and family members.

In the final analysis, caring for a loved one with dementia is a joint effort between the person with dementia, their loved ones, their medical consultants and other professional caregivers.

Editor’s note: UOAA Affiliated Support Groups all around the United States are open to ostomy and continent diversion patients, caregivers, family, and friends.