Bethany’s Story: An Architect Learns to Engineer Life with Short Bowel Syndrome

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My journey to a Short Bowel Syndrome (SBS) diagnosis followed years of motility issues, intestinal complications and numerous surgeries, including a jejunostomy, which is an ostomy that creates an opening in the part of the small intestine called the jejunum. As a trained architect, I believe there’s no problem too big to solve, and applying that mindset has helped me to navigate the challenges of SBS and life with an ostomy. This is my story.

When I was diagnosed with a motility disorder at the age of 15, I never thought that it would have such an effect in my life. I was able to function with physical activity and limited diet until I had my colon removed in 2015 due to colonic volvulus. In my case, this meant that my colon twisted around itself, causing tissue death from lack of blood flow. The procedure worsened my underlying motility disorder of the small intestine. As a result of my underlying condition of chronic intestinal pseudo obstruction (CIPO), my intestines wouldn’t function. I lost the ability to absorb nutrients through my small intestine. I was in desperate need of answers.

Ultimately, I was evaluated for an intestinal transplant. At the time, my small intestine was severely compromised due to small intestinal bacterial overgrowth. In order to improve my odds of surviving the transplant, I underwent surgery to remove the majority of my small intestine in 2018, leaving me with only four inches of small intestine that didn’t function properly. The surgery, and the resulting serious and chronic malabsorption disorder that accompanied it, resulted in my diagnosis of short bowel syndrome, SBS.

To learn more about SBS, visit https://sbs-whattoknow.com/. To join the community and talk with others who are living with SBS, check out https://www.facebook.com/TakedaSBS/.

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While not everyone will experience an SBS diagnosis the same way, for me, the removal of my colon and most of my small intestine eliminated the ongoing pain and discomfort I experienced when I was living with a motility disorder and chronic intestinal pseudo-obstruction syndrome. Just prior to the surgery to remove my small intestine, I weighed 87 pounds and couldn’t walk half a mile without becoming exhausted. I now weigh 122 pounds and was able to walk nine miles the other day. Keep in mind that this is just my experience and everyone’s journey will be different. In consultation with my medical team, I have decided to put my intestinal transplant on hold.

In my case, living with SBS also means that if I don’t eat the right things, it can affect my electrolytes and fluid balance. Without my colon, I don’t absorb fluids. So, I have found that if I drink water, I can actually lose fluids. A key part of managing my condition has been learning to listen to my own body and trying to understand what’s happening inside. For example, I have learned to recognize the signs of dehydration and have made it a priority to understand my lab values. As I have gained a better understanding of my condition, I also think it’s been important for me to find the right providers for what I’m going through at each stage of the process.

 

Navigating how to live with a jejunostomy was a challenging aspect in my SBS management, especially when I experienced leaking. I remember once going to a rare bookstore and my ostomy bag opened. In those moments, with liquid pouring down my legs, I had never felt more embarrassed. However, my grandma taught me that you have a choice in uncomfortable situations – you can either cry or laugh. I try to choose the latter. Not everyone will experience leaks with an ostomy, but if it happens to you, I’d encourage you to give yourself grace. Adapting to life with an ostomy can be a gradual process. For example, when I first had my jejunostomy, it took me an hour to change my bag and now it only takes me 15 minutes.

Despite the challenges, I never gave up on looking for answers and solutions. My training as an architect has led me to believe there is nothing that can’t be solved. After consulting with multiple ostomy teams and connecting with people who share similar experiences, I started to embrace the changes that came with my SBS diagnosis and jejunostomy.

I have been lucky enough to receive tremendous support throughout my SBS journey. My family is my biggest source of support. My husband has been there for me despite knowing about my chronic condition. My dad is the one who figured out how to empty the additional drainage bag overnight by flipping it upside down. My mother and grandma have created customized recipes to help with my oral food intake. But, for me, it’s been a continual process to educate the people around me about my condition. I have learned to be patient and vocal about my specific needs.

For anyone living with a rare and chronic illness, I encourage you to reach out and seek community support. A few members of the SBS community have inspired me and helped me to better understand my condition and encouraged me to break down barriers in my own SBS journey by sharing their own experiences. I’m grateful for the opportunity to connect with others going through similar experiences.

When I was first diagnosed with SBS, I did not think it would be possible to continue doing the things I love. Along the way, the architect in me has looked for opportunities to “design my future” with SBS by embracing challenges, educating myself and the people around me, and connecting with others in the community. I am proud of the progress I’ve made – I have a job that I love and I live in a city that I love. SBS is only a small piece of who I am, and it does not define who I am. I hope you can embrace YOUR journey with SBS, too.

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.

Justin’s Ostomy Story: Service and Happy Resilience

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Finding Humor in life with an ostomy and IBD

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

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

Still a tanker at heart!

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

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

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

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

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

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

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

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

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

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

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

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

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

Kya’s Story

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There’s no bond more important than the one with your own body. ConvaTec helps you create a healthy bond with yourself, your stoma. And then, with the world around you.

We want to show the world that people living with Ostomies have deep, beautiful nurturing relationships with everyone and everything around them.

This is Kya’s story: Coming out of the hospital postpartum and post-surgery, I honestly never thought I could never go swimming again. I never thought that I could get back to my normal life, I never thought I’d be my normal self. Turns out, I’m a better version of myself. I’m stronger and with Healthy Bonds, I am doing so much better. This is my life now. I used to think once I got an Ostomy that date nights would be stressful and less romantic, but I couldn’t have been further from the truth. Happy anniversary, baby.

 

Editor’s note: This blog/video 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.

Micheal’s Urostomy Story

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Bladder Cancer at Age 40 and the Path to Recovery

By Micheal Heath Waid

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sixty Years with an Ostomy

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By Ed Pfueller, UOAA Communications Manager

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

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

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

“It was just not something people talked about,”

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

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

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

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

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

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

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

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

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

Having the Guts to Get a Black Belt

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Cassandra Kottman’s Story

 

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

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

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

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

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

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

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

Navigating Through the Covid-19 Pandemic with Medical PTSD and My Ostomy

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me+ Community member, Sarah Biggart, shares how she experienced feelings of Medical PTSD throughout the COVID-19 Pandemic with her ostomy. Sarah’s blog was written in November of 2020, but remains relevant as we continue to navigate through the Pandemic.

Last Thanksgiving, following a beautiful dinner and a house filled with family and friends, I had to take my Dad straight to the emergency room. After a decline in health, my dad passed in January. The last months of his life had been a slog through the fog; however, saying goodbye was peaceful and everything about his passing brought me peace. It was time. Just as I was emerging from this fog, a new storm was approaching. A virus, spreading globally and forcing bustling cities into lock down: COVID-19.

As a person with a complicated medical history, I was definitely paying attention, and started taking precautions very early to mitigate risk. As anyone who lives with a compromised immune system and chronic illness knows, when we get sick, it can have a way of snowballing.

I was always aware of Medical PTSD, and recognized it in myself. The trauma of long health battles, surgeries and hospitalizations made my fears of the virus very real. I felt more affected by that fear than ever. It can be triggering for me to even smell rubbing alcohol; so smelling the strong hand sanitizers creates a visceral reaction.

When I saw people receiving nasal swabs, it took me instantaneously to having NG Tubes inserted. I could feel it, and I averted my eyes. When I saw images of people laying intubated, I automatically could feel the sensation in my throat. I remember all of those sensations so vividly. They are a part of my trauma.

It’s honestly hard to lay down exactly what this past year has been like emotionally for me. On one hand I am filled with gratitude that I am able to stay safe at home. I work from home, my child participates in remote learning, and although my husband does still go outside the home to work, we have stayed safe and happy in our cozy home. We’ve tried to keep our family traditions and make new memories.

Unfortunately, this year has also been a very bleak reminder of how my health and quality of life hang in a very delicate balance. If I were to get the virus, I have major concerns about my ability to survive. Seeing my community’s complete disregard for the health and safety of those around them has also been disheartening.

I often think about my ostomy supplies. When it became hard to get essentials this Spring, the thought of not having access to the pouches and wafers that I need was especially daunting. What would my life be like if I was unable to pouch my stoma?

Doctors figured out how to create ostomies long before companies like ConvaTec were around to innovate. Hearing stories of ostomates before me who had life-saving ostomy surgery, but could not manage them in a sanitary way, weighs heavy. What would my life be like without my supplies? I think of the pioneering ostomates, using rags and mason jars, and other archaic methods. They were true survivors!

So here we are in November. Instead of a full Thanksgiving table, it will be just the three of us this year. While our country is facing an unprecedented public health crisis, my family will continue to stay safe, stay home and mask up. I wish nothing but peace, health and happiness for all of us.

The Pandemic Tree

Early on, to make things fun we pulled out our Christmas Tree, topped it with a roll of toilet paper and strung up some lights. We crafted ornaments and added them to commemorate milestones and events. It was silly and fun, and for us, all bets were off during quarantine. Our family mantra became healthy, happy and sane, we did what we could to get ourselves there. The Quarantree became a Halloween Tree, and now has transformed into a Fall tree. It continues to make our home feel cozy and festive and truly brings us joy.

 

 

 

 

 

 

 

 

Editor’s note: This article 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.

We All Need Ostomy Friends

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Why You Should Join UOAA as an Official Member

By Alyssa Zeldenrust

(National Conference attendee since 2011, DuPage County Support Group (suburban Chicago), Co-Chair of Events for Young Adults)

UOAA friends, educational tools, and vendor fairs have been lifesavers for me, so I’d like to share a bit about why I’m a member and what UOAA has to offer.

United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for the 725,000 to 1 million of us Americans who are living with an ostomy or continent diversion (like a J-Pouch.) There is no need to feel alone, approximately 100,000 new life-saving ostomy surgeries are performed annually in the United States.

Without UOAA and medically diverse friends, I don’t know where I’d be today.

You can join one of the 300+ Affiliated Support Groups in the U.S. for local peer support and information. Whether you’re new or an ostomy veteran, you can get a lot out of UOAA resources.

I make sure every younger person I see at UOAA’s National Conference is welcomed into our group.

In my personal experience with my local support group, it’s a great way you can make friends who truly understand your situation. If you’re an ostomy veteran, you’re incredibly important to the new members of the group because you can guide them through difficult situations. Local ostomy friends are great because you can do social events in addition to support group meetings. I’ve gone to concerts, dinners, and parties with local buddies and it makes me feel so welcomed because nobody judges my body and we all tend to have a little bit of a dark sense of humor after a few years of illness or surgery.

Everyone should also become an official National Member, there is a membership for medical professionals as well. UOAA offers the National Membership for Individuals for an annual fee of $20.00. As an Individual Member you will receive UOAA’s:

  • National Membership pin and a stoma rose pin
  • Monthly e-Newsletter
  • New Ostomy Patient Guide
  • Plus, you’ll be notified when new or updated educational materials are available.
  • Have voting rights for our national elections
  • Can be nominated to be elected to serve on our Board of Directors
  • Will get a membership packet that includes a special promotion code to subscribe to The Phoenix magazine at a discounted rate.

Joining is also about standing up and being counted for advocacy purposes.

When I was too sick to attend the Run for Resilience Ostomy 5k my parents and fellow support group members made sure I was there in spirit with my face on masks.

Some local support groups host regional conferences that can be great. I had so much fun at the Midwest Regional Conference when I was lucky enough to go, and I left with a bunch of notes and new products to try.

National conferences are usually held every two years (Houston, Texas Aug 11-13, 2022 is next!) and are major events that turn me into a tornado of attempted hospitality. I make it my personal mission to find all the younger crowd and make sure nobody is left out and everyone has a chance to bond outside of the educational sessions. We have fun going all out with the parties and dancing up a storm. One of my favorite things has always been the vendor fair because you always find new things to try, and you can talk to people directly about their product. The educational sessions are so good that sometimes I truly have trouble choosing, so then we split up and take notes for each other.

A few people admitted to me later that they didn’t expect to leave with new, actual friends. That sort of thing just makes my heart happy. Without UOAA and medically diverse friends, I don’t know where I’d be today.

 

A version of this article first appeared on Allysa’s blog Partially Unstuffed

 

 

Matt’s Story: Living Life Intentionally with Short Bowel Syndrome

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This article was created by Takeda.

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

 

Support is Crucial

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Written by: Brenda Elsagher, Director of Affiliated Support Group (ASG) Affairs, United Ostomy Association of America

Support. I’m not talking about my bra, although it could win an Oscar for a supporting role! I’m talking about the kind of encouragement you get from knowing another person with an ostomy.

I freaked out when I was 39 and had to have a colostomy. I wanted a point of reference and needed to talk to someone who had a stoma. I wanted to know what to expect; I wanted to prepare my body and mind for the changes coming my way. There was no internet and no social media. I didn’t even know there was any other kind of ostomy besides a colostomy.

My Wound, Ostomy, and Continence Nurse (WOCN) was a great source of comfort. She calmly explained, without horror, that excrement (OK, I think she actually said “stool” – and I wouldn’t have used either of those words) would be coming out of my abdomen and into a bag that would somehow adhere to my body.

She made it sound like it would become so natural, as if I was adding a quart of milk to my shopping list. No big deal. You’ll get this in no time at all. And she said all of this with a confident smile – a genuine one, not a fake one like when people are trying to help you through something awful. I felt she meant it! So, I let myself believe her.

During one of my subsequent visits to her office, I saw a newsletter that listed a meeting time for people living with ostomies. I went to the meeting, and realized that this was my tribe. For many attendees, these gatherings were the only ostomy support they had, other than their loved ones who tried to understand but could never quite get it. Besides, here were people I could eat a meal with while talking about changing ostomy pouches. You can’t do that with every crowd! I met life-long friends at those meetings, and that was an unexpected perk.

Then I heard of a conference, the United Ostomy Associations of America (UOAA) national conference, where people came from all over the USA, and some from Canada and other countries too. It featured classes, social events, great speakers, and time to get to know more people with ostomies. A young man I talked to recently told me that he met someone at the 2009 conference who changed his life and made all the difference. If we only knew the power of a quiet conversation and how its impact can be phenomenal. We can be a resource for one another. That’s why I suggest regular telephone check-ins or video calls with UOAA Affiliated Support Groups (ASGs), because both can play a crucial role in helping someone feel connected.

I also found information galore and updates on the latest innovative technology for people with ostomies in The Phoenix magazine (the official publication of the UOAA), which still exists today. Not long after, I got America Online (AOL) and felt like I was on the forefront of technology. I had a computer, and now the internet. Imagine horns blasting – my world opened up and the exchange of information worldwide was awesome. Even more ways to communicate! A woman in Colorado who read my book, “If the Battle is Over, Why am I Still In Uniform,” emailed me, decided to get a colonoscopy, and was spared from cancer. That is a satisfying feeling, to know you gave up a year of your life to write a book and it saved another.

I began to speak across the USA. Who would have thought that 25 years later I am still talking about bowels and butts, or dare I say the lack of them in some cases? The people I have met, the conversations I have had, the opportunities that have come my way – all because I chose to meet with a small group of people. That experience led to an abundance of support, not only for me but for others I know with ostomies or continent diversions, because of all that we shared. Some shared their misery, some shared their success, and some listened, learned, and began to feel that they could deal with their situations. Finding the group was life enhancing, and even life-saving in many cases. I kept coming to help others, but have been helped in return many times over. A phrase that I often heard at the meetings was, “Someone reached out to me in the hospital, and I want to do the same.”

In my new role as the UOAA Director of ASG Affairs, I have come full circle as a volunteer. I meet so many people across the USA that are actively reaching out to others, and helping them on their paths to recovery of mind, body, and spirit. I am their cheerleader. Sometimes I can offer a suggestion or teach them how to use Zoom to stay connected. I have always known that the UOAA had our backs but I have now found so many more resources on their website that I never knew existed. There are over 300 ostomy support groups in the USA for people with ostomies and continent diversions. And for people who don’t like to go to group meetings, there is an individual membership too that gives them full access to an abundance of resources.

There is no right way or wrong way to have an ostomy. You don’t have to shout it out to the world, but there also is no reason to be ashamed about it. I honor your privacy, and thank you for honoring my desire to be public. Both are good. We are alive and grateful!

 

This article originated in the Hollister Secure Start services eNewsletter. For more ostomy resources at your fingertips, subscribe here.

Brenda Elsagher is an author, international speaker, and comedian, and also volunteers with the UOAA. She has been living well with an ostomy for 25 years. Find out more about Brenda at www.livingandlaughing.com, and follow her on Facebook @BrendaElsagher. 

Financial Disclosure: Brenda Elsagher received compensation from Hollister Incorporated for her contribution to this article.

 

Editor’s note: This article is from one of our digital sponsors, Hollister Incorporated. 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.