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.”

After ostomy surgery, it’s natural to feel sensitive about how your body has changed and be concerned about how it might affect intimacy and your sex life in the future.

Wherever you are in your journey, your sexual well-being is an important part of who you are.

  • Sexual well-being is an important part of everyone’s life, regardless of whether you are in a committed relationship, enjoying or thinking about dating, not sexually active, or unpartnered.1 
  • It covers many areas including body image and self-esteem, sexual function, reproductive health, emotional and physical satisfaction, and can impact both your physical and mental well-being. 1, 2
  • Pleasurable, fulfilling and fun sexual and intimate experiences are not out of bounds because you’ve had ostomy surgery. And no matter what your relationship status, age, gender or sexuality, starting the conversation about sex is just as important as the discussions around diet, exercise, skin issues and generally living with your ostomy.

Here are some topics you can explore in more detail in A Guide to Intimacy after Ostomy Surgery:

  • If you’re not ready, don’t rush. For some, intimacy will be one of the most important aspects of life they want to resume post-surgery, and for others, it might be the last thing on their minds.
  • When you are ready….Communication is the key when it comes to intimacy. Make time to talk to your partner.
  • Enjoying intimacy with an ostomy is anything but boring! Refer to the Guide for tips to increase your, and your partner’s, enjoyment.
  • Sexual orientation: Whatever your gender identity and sexual orientation, there are so many different ways of expressing and enjoying intimate moments including holding hands, hugging, kissing, cuddling and lots more.
  • Common issues that can affect everyone. The most common issues reported to us from people following ostomy surgery are feeling they must resume intimate relationships straightaway, and a fear of disappointing their partner.1 Two very common conditions that can affect sexual intimacy – vaginal dryness and erectile dysfunction – can be experienced by men and women at all stages of life, and whether they have an ostomy or not.
  • Pregnancy with an ostomy: Many women with an ostomy worry that pregnancy will be an issue after surgery, but in the vast majority of cases, it shouldn’t be. Most women are able to enjoy a very typical experience.

For more information, download A Guide to Intimacy after Ostomy Surgery

  1. References: 1. A Cross-National Study of Subjective Sexual Well-Being Among Older Women and Men: Findings From the Global Study of Sexual Attitudes and Behaviors Publication Title: Springer. Publication Date: 4/2006 . Author: Laumann, Edward; Paik, Anthony; Glasser, Dale; Kang, Jeong-Han; Wang, Tianfu; Levinson, Bernard; Moreira, Edson; Nicolosi, Alfredo; Gingell, Clive. 2. What is sexual well-being and why does it matter for public health? Kirstin R Mitchell, Ruth Lewis, Lucia F O’Sullivan, J Dennis Fortenberry. Lancet Public Health 2021; 6: e608–13. Published Online. June 21, 2021. https://doi.org/10.1016/S2468-2667(21)00099-2.

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.

By Lynn Wolfson

It is amazing what a boost one can get from dressing to feel and look good, especially those of us with ostomies. I know that when my hair is cut into an easy style that I can maintain, my nails are done and my clothes fit, I feel beautiful. When I feel beautiful, I am happy and share it with the world.

As an ostomy support group leader, I often hear from new ostomates struggling with what to wear after surgery. Many people may have their own style and should explore options to keep wearing the clothing they love. Too many others seem to lose confidence and motivation to dress in the more presentable ways they once did. Overall, I stress to dress so that you feel confident, comfortable, and good about yourself.

So, let us start with the pants. Depending on where the ostomy is located, this will determine whether one would be comfortable with zipper and button pants such as jeans. For me, I find that too restrictive, especially since I have two ostomies. Instead, I prefer either maternity pants, so I have belly room and my legs are not baggy or high elastic-waisted pants. I buy a variety of solid colors of the pants that I find most comfortable.

Unfortunately, men do not have the same choices as women. They should find a brand of pants that are comfortable for them and get them in an array of colors. Stretchable waists can be found on various pants and shorts designs, so don’t feel like you have to resort to athletic wear if you don’t want to.

The tops for women are fun to shop.  I usually get a loose shirt or blouse that goes over the pants. I get multiple tops for each pair of pants so I can mix and match.

Men may still have to tuck their shirts in for business. However casually, they can wear a shirt outside their pants or shorts.

It helps to be beautiful on the outside, especially when I am not physically feeling great.

Since I live in Florida, I only wear pants when it is chilly or when I travel to colder climates.  Personally, I prefer wearing dresses that do not have a waist.  I find them very comfortable and cooler in our hot climate. However, these dresses are not appropriate for business. I do have more tailored dresses without a waistline to wear for business occasions. I generally prefer wearing dresses just below the knee as one of my ostomy bags hangs low.

Shoes should be comfortable. Wear sneakers whenever possible if that’s what you want to do. In Florida, I wear sandals with rubber soles. Up north, boots are a necessity.

Lastly, I get my hair colored and shaped once every six weeks to keep it looking fresh and easy for me to maintain. I also get my nails done every three weeks.

It helps to be beautiful on the outside, especially when I am not physically feeling great. It helps me to get myself going and not have that get back into bed feeling. It is all a matter of attitude!  When I dress for success, I feel good about myself and am successful in getting things done.

Choosing Ostomy Surgery

Before I got diagnosed with ulcerative colitis, I had zero health issues throughout my life, except for high blood pressure. Fast forward to age 26 and I started experiencing a lot of blood in my stool with no idea why. I can be a stubborn person so I didn’t tell anyone what was happening; not even the people closest to me. A few months went by and my mother noticed blood in the toilet pretty consistently and asked me about it. I told her that it had been going on for months and that I didn’t know why.

We ended up going to our local gastroenterologist and they did tests and I got diagnosed with ulcerative colitis. Obviously, I had no idea what it was but he said that I would need to change my diet and to watch what I eat. Fast forward a year or more and I had already been through two GIs and I was being sent to another. They said that I had a very severe case of ulcerative colitis. Meanwhile, around two years in I lost the ability to be able to hold my bowels in for longer than a few seconds. I was miserable, had lost a lot of weight, and also a lot of “friends”. This was also all happening during the COVID pandemic so I wasn’t able to see my doctors in person.

The final year before I got surgery I had lost 40-50 pounds, had been to the emergency department  countless times, as well as hospitalized 3-4 times. I ended up being super anemic and needed iron infusions as well as one blood infusion. That last year was the final straw. The summer of 2021 I ended up losing my bowels on myself 40+ times on my 20-minute drive home from work. I told my boss I couldn’t work anymore and that’s when I first heard about ostomies and started researching. I didn’t know what an ostomy bag was before then but after joining a subreddit on Reddit called r/Ostomy I started to see that an ostomy was the answer to my problem.

I went to my GI and told him that I’m done trying medicine, I’m done not being able to go out and experience life, I’m done with prednisone (which was wrecking my body), and  I’m done being physically, mentally, and spiritually drained. I was completely broken. He said that all he could do was refer me to a surgeon. I arrived at the surgeon’s office begging him for surgery and he said “I’ve never had a patient come into my office practically begging me for surgery, so yes we can do it.”

Getting an ostomy completely changed my life but I didn’t let it completely change me.

Two months later I was walking in for a total colectomy and a placement of a stoma. I was afraid but I knew I couldn’t keep living the way I was. So February 21 of 2022 I got Stoma Steve. It only took a few weeks to know that I made the right decision. I felt better immediately. Luckily, I had a lot of help between my spirituality, my support network, my family, the subreddit r/Ostomy, and the surgeon’s office. I couldn’t have done it alone.

I didn’t want to mention this because I didn’t want it to be a focal point of my story, but at the time of my surgery I had over 5+ years clean from ALL mood or mind-altering chemicals so I didn’t go home from the hospital with any medicine besides Tylenol. Honestly, the recovery wasn’t bad but only a short few months after I developed a prolapse of my stoma. It was a big one but it wasn’t affecting my daily life (besides the anxiety it caused me) so they opted to wait to fix it until I decided whether or not I wanted to keep the stoma forever or get a reversal.

I want to be able to share with people that just because I have something like an ostomy doesn’t mean I can’t do the things I love. Being a bright light in a horrible disease is a blessing for me.

I researched reversals and with the help of family decided that I was going to keep the ostomy bag. So on January 10th of 2023 I got my rectum and anus removed and they fixed my stoma prolapse. Again, the recovery wasn’t bad but this time the hospital stay was horrible. I ended up getting straight cathed three times, I had an NG tube placed because Stoma Steve wasn’t pushing food out and my drain was bothering me for the month I had it. Again, I can’t thank the subreddit r/Ostomy enough because they were who I vented to and talked to for help and coping strategies because no one in my life except them knew what I was going through.

My Ostomy bag and stoma has saved my life. This year has been one of the best years of my life. I explored nature, started exercising, running/walking 5ks, fishing more, cycling, and many other things. I’m a Patient Care Technician in the Behavioral Health Unit in my local hospital. I love being able to help people on a daily basis. Being able to fulfill my purpose; which is helping other people, brings me joy daily. That is why I want to share my story.

I did no know about UOAA until I became interested in wanting to share my story and researched how to get involved with advocacy and sharing about ostomies. I would love to do the Run for Resilience Ostomy 5K on World Ostomy Day this year and get more involved with the UOAA community.

Getting an ostomy completely changed my life but I didn’t let it completely change me. A lot of people don’t understand why I’m so positive and happy most of the time. It is because I have been through a lot in my short 30 years of life and I don’t want to let the bad things outweigh the good things. I want to be able to share with people that just because I have something like an ostomy doesn’t mean I can’t do the things I love. Being a bright light in a horrible disease is a blessing for me.

Thank you for reading!!

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

Sleep is vital for health and healing. Hormones released at night are responsible for cell growth and repair. We also need quality sleep for healthy cognitive functioning and so we can complete everyday tasks. A lack of sleep can lead to confusion, delayed healing, immunosuppression, elevated blood pressure, decreased pain tolerance, and many other negative effects.

If you have an ostomy, your quality of life may be impacted by the condition of the skin around your stoma (i.e., your peristomal skin), and issues like pouch ballooning and leakage. One area often not given much attention is how having an ostomy affects your sleep. Based on anecdotal evidence (i.e., clinician experiences and patient stories), we know that living with an ostomy can negatively impact sleep. But to what extent?

Ostomy Sleep Survey

To answer this question, Hollister Incorporated conducted an Ostomy Sleep Survey1. The results revealed some interesting insights on how having a stoma impacts sleep and on how ostomates address their sleep issues.

To conduct this research, we collaborated with product distributors and patient organizations to provide nearly 6,000 people with a detailed 15-question online survey. Participants varied in type of ostomy and length of time living with an ostomy.

The survey included both those with healthy and unhealthy/compromised peristomal skin. Nearly 60% of participants were in the unhealthy category, although most of them (40%) reported only reddened skin and no other symptoms. (n=5,690)

The impact of sleeping with an ostomy

Many people experience interrupted sleep for various reasons, including insomnia, sleep apnea, stress, and environmental factors. However, those with an ostomy have an added layer of potential sleep disruption.

The survey results provided strong evidence of an ostomy’s impact on sleep:

  • Nearly 50% of respondents said their pouching system disrupted their sleep in the past 30 days (n=5,648)
  • 75% experienced pouch-related sleep disruptions at least once a week (n=2,476)
  • 64% of participants — nearly 2 in 3 — cited pouch ballooning as a sleep disrupter (n=2,676)
  • 50% said that sleep disruption was due to pouch leakage or worry that the pouch would fail (n=2,676)
  • Nearly 20% said their sleep was disrupted by itchy skin with no visible sign of irritation (n=2,676)

To read more about the data collected and how to address sleep disruptions, keep reading here.

  1. Hollister Data on File, ref-02989, 2022.

This article was contributed by Hollister Incorporated. Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. For more helpful resources, visit http://www.hollister.com/ostomylearningcenter.

Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. Hollister is a trademark of Hollister Incorporated.

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.

We are so excited to be walking, running, or rolling in over six live events across the USA! Join us at a live event near you or participate in your own community virtually!

We’re couldn’t just celebrate one Ostomy Awareness Day, we’d rather celebrate #Ostober!

Join us on Facebook and Instagram as we celebrate a whole month of Ostomy Care!

Join over 350,000 me+ community members worldwide to help you find the right support to feel stronger, more confident and ready for what’s ahead. Our me+ program offers The ostomy products and support you need, tips and advice for living with an ostomy, and a community you can learn from. Have questions about living with an ostomy? Our me+ product specialist and ostomy nurses are waiting to help you, call 1-800-422-8811.

 

(Editor’s note: Convatec is the Exclusive Diamond Sponsor of this year’s Run for Resilience Ostomy 5k. Their support helps make these UOAA ostomy awareness events possible)

Chris Seyler joined the Phoenix (Arizona) Ostomy Support Groups during COVID times and met up with the group at a park ostomy meeting. Recovering from long term illness and recent surgery, he was ready to find his way back to normal life.

Chris was born in the Phoenix area. While growing up his parents taught him to be active in a team sport, exercise and stay away from bad habits in life.  Chris played basketball and ran track, being nominated for all state in both sports. Receiving a basketball scholarship, and motivated by teachers and coaches, Chris majored in Kinesiology and Science from The Master’s University and became a teacher.

While in college Chris met his wife Colleen, also a teacher. Their son, Nathan, shares his parents’ passion for teaching and athletics and was selected to be in a Disney running movie, MacFarland, USA. Father-Son teamed up to coach school teams in Track and Basketball, winning state Championships.

Following his passion, and inspired by his son, Chris started competing in more events. From 2003 to 2017 he competed in 5ks, 10ks, half and full marathons, triathlons, Ironman, and obstacle racing. It was after AZ IRONMAN 2013 that Chris was diagnosed with ulcerative colitis and started losing weight in 2017.  The next couple of years were tough; in and out of the hospitals for nutrition and dehydration and battling a bacterium in his colon.  Various medications and infusions did not help with easing the illness and emergency surgery was performed in 2019.

Weak from illness and surgery Chris retired from his full-time teaching job and put his running shoes aside.

As time went on and recovery was underway, Chris set a goal to run a 5k. Not able to keep up with his wife, she encouraged him to walk, jog, and run. Hydration was always important as part of Chris’ races, but not having a colon taught him he had to be even more diligent about it.  During Run for Resilience Ostomy 5k 2021, Colleen ran the race. Chris walked and rested with his dog…but he finished…and his passion was returning! While training he worked on improving balance and strength and was able to jog/run at the Arizona Run for Resilience Ostomy 5k in 2022. Chris will be participating this year on the Arizona Virtual Race Team as part of the 2023 Run for Resilience Virtual Ostomy 5k on October 7th.

Passionate about life after ostomy surgery; Chris is teaching part-time, is the Phoenix Ostomy Group Secretary and the Meeting Leader at HH Cowden Center ostomy meetings.

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. You can donate to UOAA fundraisers by Chris and other resilient participants here

By Jeanine Gleba and Ed Pfueller, UOAA

Do you prefer to work behind the scenes for change? Are you crafty and creative? Do you like to share on social media? No matter how you want to do it, UOAA encourages everyone in the ostomy community to do one little thing to raise awareness and smash stigmas this upcoming National Ostomy Awareness Day on Saturday, October 7, 2023.

One option is to just do something to celebrate having your life back after this lifesaving and life restoring surgery!  You are living proof that ostomies are lifesavers and that’s something to shout from the rooftops. With close to one million people living with an ostomy or continent diversion in America, we could really make some noise!

If you find yourself asking, “Well what can I do?”, check out the clever ideas below that people have shared with us and things that people have already started doing for #OstomyDay2023:

Arty Awareness

  • Bake it or order it. One nurse gets custom cookies made to share at her local ostomy awareness day event. Yum!

Social Media Awareness

  • Share Your Ostomies Are Life-Savers story. People have started sharing their personal stories about how having an ostomy has saved or changed their life with friends on social media. You can use our Instagram and TikTok video green screen as a background (found here) or simply print out this sign and take a selfie! Be sure to tag UOAA and use hashtag #OstomiesAreLifesavers #IAmLivingProof and #OstomyDay2023.
  • Social Stickers. Grab some attention for awareness with our “giphy stickers” or use the latest profile photo frame. Better still get some real stickers made and you can put them on water bottles, laptops, cell phones and more to raise awareness all year long! 

On the Scene or Behind the Scenes For Awareness

  • Mascots for Awareness. WOC nurse Linda Coulter has taken to getting every mascot she encounters to help spread ostomy awareness at sports venues and beyond. Online she shares all the fun #Mascots4ostomyAwareness photos. Also out and about is our friends @DoubleBagginit that spread ostomy awareness wherever they go with their clever #ostomybombs.

  • Walk or even sleep in for Ostomy Awareness.  Those not near a Run for Resilience event or who more are more inclined to sleep in can still donate to the cause while others often do an informal walk or even ride their horse as part of the Virtual Ostomy 5k.

  • Light up Your State Capitol. An advocate in Pennsylvania has worked with her elected official and the capitol building in Harrisburg, PA will be lit blue and green (UOAA official colors) recognizing Ostomy Awareness Day on October 7th between 6:30PM – Midnight EST! As this advocate wrote “Amazing what can happen when we open the dialogue!” The Capitol Building in Baton Rouge, Louisiana will also be lit to celebrate the day so inquire with your state!
  • Virtual Race Car. Someone else participates in the iRacing community. He painted his virtual racing car to raise ostomy awareness. Check out photos and story here.
  • Public Displays. In past years, nurses and others have done ostomy awareness displays at local hospitals or libraries or have hosted picnics with their support groups.

Give it some thought.  You might come up with your own unique idea!  If you do, we’d love to hear them, so send us an email at advocacy@ostomy.org.

Keep checking our webpage for all of the fun events that will be happening like UOAA’s Virtual Happy Hour on October 7th and other ways that you can raise awareness!