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.

Do I Have a Parastomal Hernia?

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By Robin Glover

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

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

What Is a Parastomal Hernia?

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

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

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

Dealing With a Parastomal Hernia

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

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

Preventing a Parastomal Hernia

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

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

How Do You Fix a Parastomal Hernia?

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

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

 

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

The importance of a proper barrier fit for peristomal skin health

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Sponsored by Coloplast

Have you ever experienced skin issues under your barrier? While peristomal skin conditions are all too common, many are easily treated – and better yet, avoided – with the right knowledge, product fit, and support. Finding the right ostomy barrier to fit your individual needs can be a challenge and may involve trying a few different barriers to fit your unique body and stoma. Getting a nice snug fit between your stoma and ostomy barrier is key to protecting your skin, and helps you reduce the risk of experiencing a frustrating cycle of stoma leakage and resulting skin issues.

If you see an ostomy nurse – great! Every person’s situation is unique, so if you’ve worked together on a solution, or if you’re currently experiencing skin issues that may require a specific intervention, I highly recommend working with your ostomy nurse to find the routine that works for you. That said, below are some general tips that are relevant to anyone with an ostomy.

As the saying goes, “An ounce of prevention is worth a pound of cure” – meaning it’s preferable to take precautions than to suffer the consequences later. This is also true in ostomy care. So, what can taking precautions for peristomal skin health look like? While it may not be realistic to prevent skin issues 100% of the time (after all, things happen!) finding a well-fitted and comfortable pouching system for your stoma and body profile is a great place to start in reducing your chances of skin issues. I always like to explain proper fit like trying on shoes at the store. When buying a new pair of shoes there are different criteria to follow. For example, is this the right size? Is it too big? Too small? Does my foot move around too much or not enough? Does it chafe when I bend too much or too fast? All these questions can also be asked when selecting the fit of your ostomy barrier.

The right barrier?

While you might sacrifice comfort for a number of reasons when you’re picking a new pair of shoes, your ostomy barrier should be treated more like your favorite go-to shoe no matter the occasion – going out on the town, running on the trails, or enjoying a quiet night in. If your shoe doesn’t fit and move with your foot just right, you may find that you have blisters on your heels from walking in them for too long. Similarly, if your barrier doesn’t move with your body while you sit, stretch, and go about your day, you may also find blisters or painful sores underneath your adhesive. That’s why the adhesive of your product is also important to consider when finding the right barrier for you – there are a lot of options out there! For instance, there are options for more stability around your stoma, more flexibility, special sizes and shapes to better fit your body’s contours, more resistance to breakdown from stoma output, and a host of other options that your WOC nurse can help you navigate. No matter which option you choose, an ostomy barrier should move comfortably with your body and shouldn’t limit your activities or range of motion.

Does this fit just right?

A great question! Let’s continue referencing trying on shoes. If the shoe is too large, your foot slides around and can create some friction in some places like your heel or your toes. Ouch! If the shoe is too small for your foot, it’s too tight and is quite uncomfortable, which can also create some friction and maybe some sores, much like when the shoe is too big. So, how do we relate this to an ostomy barrier? Let’s discuss! An ostomy barrier needs to be snug to the stoma and measured properly. If the barrier size is cut too big, the risk of stool or urine on the skin from the fit not being appropriate can create irritation or even sores. If the barrier is too tight, the proper seal may not be achieved, and the improper fit could lead to irritation on the skin or even to the stoma if the fit is far too tight. Just like you would use a previous shoe size as a reference or a foot-measuring size guide at the store, utilizing a stoma measuring guide to size up your stoma may be key to getting the right fitting barrier. You want to make sure that the measuring guide fits snug around the stoma, but not too tight, and just close enough to the stoma so the skin doesn’t show through.

For illustration purposes only. Performance and experience may vary. Talk to your healthcare professional about what may be right for you. Please refer to product ‘Instructions for Use’ for intended use and relevant safety information.

What is a solution?

Finding the right solution may take a few tries to find the right fitting barrier for your body type and your stoma size. When finding the right fit, the goal is to reduce any peristomal skin irritation or issues you could experience from improper sizing. Utilizing a size guide or template that you created is helpful with each pouch change to stay consistent. If the fit of your barrier changes, like after surgery when your stoma swelling goes down, creating a new template may help reduce potential peristomal complications.

Making a routine for fit

Don’t forget to do a body assessment when you perform a stoma assessment. What is a body assessment? Let’s reference shoes again. Just like when you try on a pair of shoes from many years ago that used to be your favorite to wear, you may find that when you try them on, they no longer fit, and it’s time to go up a shoe size. Similarly, it’s important to observe your stoma and skin over time to make sure that the barrier you’re using still fits right. All bodies change over time, especially our skin. Fluctuations in weight and differences in skin texture may impact the fit of your barrier. One way to stay on top of your body assessments is to do an online check. Coloplast’s BodyCheck tool is a simple way to check in on your fit and assess your body and stoma profile. If you feel it has been a while since the last time you checked in with your WOC nurse for a barrier fitting, I’d certainly recommend scheduling an appointment, too. Current guidelines recommend an annual checkup with a WOC nurse, and this is a great way to get back on track with your fit.

 

Mackenzie Bauhs, CWOCN, is currently an employee and Ostomy Clinical Consultant for Coloplast. She obtained her bachelor’s degree at Carroll University in Wisconsin. She has worked with ostomy patients in the post-operative period at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin as well as outpatient ostomy care at Rush University Medical Center in Chicago, Illinois.

The materials and resources presented are intended to be an educational resource and presented for general information purposes only. They are not intended to constitute medical or business advice or in any way replace the independent medical judgment of a trained and licensed physician with respect to any patient needs or circumstances. The information presented or discussed may not be representative of all patient outcomes. Each person’s situation is unique, and risks, outcomes, experience, and results may vary. Please see complete product instructions for use, including all product indications, contraindications, precautions, warnings, and adverse events.

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

A Quick Guide to Urostomy Basics

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Have questions about a urostomy? Worried that getting one will change your life dramatically? Terrified of the idea of one and wondering what people will think?

By Robin Glover

Don’t worry. These are normal feelings. Nobody likes the idea of getting a urostomy – at first. However, if you talk to people who’ve had one a while, they’ll tell you how much it’s improved their lives, and likely saved it.

So feeling a little apprehensive (or a lot) is completely expected. But getting a urostomy should not hold you back from living the life you’ve always wanted. Will it change your life? Yes, but likely for the better compared to past bladder issues.

What Is A Urostomy?

A urostomy allows urine to leave the body without the need of a bladder. Also known as an ileal conduit, it is a surgically-created pathway that channels urine through the intestine to an opening on the abdomen. This opening, known as a stoma, is covered by an external pouching system that collects the liquid.

Why Do People Need A Urostomy?

People need a urostomy because their bladder has either been removed or doesn’t function properly. This is most often due to bladder cancer, but can also be the result of an injury or disease. In other cases, people are born with a non-functioning bladder and benefit from a urostomy their entire lives.

Is A Urostomy Gross?

No. Not at all. They do not cause an odor, and most people won’t even know if someone has one. Getting a urostomy is often a life-saving procedure that allows people to resume their everyday lives. Most people find it much easier and more sanitary to have a urostomy than deal with an incontinent bladder.

Will A Urostomy Affect My Daily Life?

There will be some adjustments after surgery, but most people who get a urostomy can usually do more things than they could before. You won’t need to worry about the embarrassment of having an accident in public or always needing to know where the nearest bathroom is. But most of all, you’ll be able to live a longer and healthier life.

Is A Urostomy The Same As A Colostomy?

While they share similar mechanisms in how they function, a urostomy helps people with bladder incontinence. A colostomy helps people with stool incontinence. Both use a pouching system to collect what comes out, and both are sanitary and safe without any odor when closed.  Urostomy pouches have a tap or valve to allow the urine to be drained quickly and easily. Overnight options are available for nighttime drainage convenience.

How Many People Have A Urostomy?

You are not alone. An estimated 725,000 to one million people in the United States have an ostomy or continent diversion. Colostomy and ileostomy surgery are the most common ostomy types but many thousands of people of all ages and backgrounds have a urostomy or urinary diversion. For a bit of inspiration read a few of their patient stories on our blog.

How Will A Urostomy Change My Diet?

You can eat whatever you want when you have a urostomy. Of course, this is barring specific restrictions from your doctor or other dietary limitations unrelated to having a urostomy. But, in general, there are no restrictions to what you can eat with a urostomy but information on the importance of hydration and other good health practices are covered in our ostomy nutrition guide.

What Is A Continent Urostomy?

A continent urostomy involves a surgically formed internal reservoir that allows control of when urine is released from the body. It usually involves a catheter that’s inserted into the stoma. Continent urostomies can also be routed through the urethra so urine is released from the body in a more typical fashion. Check out our Continent Urostomy Guide for more information.

Does A Urostomy Decrease Life Expectancy?

The answer is no. Urostomy surgery is a way to help people live longer and more fulfilled lives. So if you’ve been told you need a urostomy, as much as you might not think so right now, you’ll probably be glad you had it.

 

These are probably just a few questions you have about a urostomy. Luckily, there are people all over the world happy to help you. First of all, your Wound, Ostomy, and Continence (WOC) nurse is there to teach and help you. But practical advice and emotional support are always just a click away in online communities and by finding a UOAA Affiliated Support Group near you. Just remember that only your doctor and WOC nurse know the unique circumstances of your condition.

For more information on urostomies, please visit our Urostomy Facts Page.

 

 

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

 

 

Barrier considerations to obtain your fit

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What is more important: fit, flexibility, stretch capability, or adhesion?

If you cannot decide, or there are two or more that are just as important, you are not wrong. Why not have all in one for your barrier selection? You can have fit, flexibility, stretch capability, and adhesion in one pouching system!

Fit

When selecting a barrier, many considerations can come into play. When considering fit, proper application and sizing is important to help reduce leakage and create a seal around the stoma. Utilizing a stoma measuring guide or template with each pouch change is beneficial to help obtain the proper fit. Stoma size can change after surgery, so measuring is key.  Deciding between a precut or a cut-to-fit barrier is also important to consider, as it depends on which option provides the best fit to your body.

Flexibility

A flexible barrier will move, bend, and stretch with your body allowing you to be comfortable as you go about your daily activities. Flexibility with stability helps achieve a seal around the stoma along with the proper fit. In day-to-day movements like, getting in and out of your car, vacuuming, getting a spice off the top shelf, or even a sport you enjoy playing, flexibility is important to move with your body.

Stretch capability

Can you have flexibility without stretch capability and vice versa? What if these two worked hand in hand to create the best seal and optimal comfort to help you with your daily activities? Think back to reaching to get a spice off the top shelf in the kitchen. You need to have flexibility in the barrier to obtain the stretch, but then when back in a normal standing position the ability for the barrier to go back to the original shape after completing the stretch—how is that obtained? Teamwork!

Adhesion

Lastly the ability for the barrier to have adhesion to the skin. This can be a challenge outside of the barrier itself. For example, what if there is a small area of irritation, moisture, or the landscape is not perfectly flat (which is very common)? The adhesion is important to provide the tact to the skin so that the barrier has all the capabilities: fit, flexibility and stretch! Good adhesive security is obtained by gentle warmth using the body heat of your hands, and a nice gentle pressure with application from the inside (near the stoma) all the way to the edges of the barrier. This helps activate the adhesive into those small nooks and crannies that our skin has even if we can’t see them with the naked eye.

Essentially, there are many questions that may come up when deciding on the best barrier fit for you. Let’s go back to the original question that was posed: What is more important: fit, flexibility, stretch capability, or adhesion? The answer can be any of the above, and it all depends on your own lifestyle and personal needs. Things to keep in mind when you are considering your barrier options are, “Does this barrier have a good fit to my body?”, “Does the barrier allow me to stretch without compromising the seal?”, and lastly, “Does this barrier give me the security to enjoy my activities?”. There are options available for many body types and challenges. Reach out to your WOC nurse so they can help you answer the questions that are important to you!

 

Mackenzie Bauhs, CWOCN, is currently an employee and Ostomy Clinical Consultant for Coloplast. She obtained her bachelor’s degree at Carroll University in Wisconsin. She has worked with ostomy patients in the post-operative period at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin as well as outpatient ostomy care at Rush University Medical Center in Chicago, Illinois.

The materials and resources presented are intended to be an educational resource and presented for general information purposes only. They are not intended to constitute medical or business advice or in any way replace the independent medical judgment of a trained and licensed physician with respect to any patient needs or circumstances. The information presented or discussed may not be representative of all patient outcomes. Each person’s situation is unique, and risks, outcomes, experiences, and results may vary. Please see complete product instructions for use, including all product indications, contraindications, precautions, warnings, and adverse events.

 

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

 

 

Holiday Eating with an Ostomy

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By Robin Glover

Oh, the holidays! When cookies, cakes, and delicious pies suddenly appear everywhere, beckoning you to indulge in their sugary goodness. Don’t forget about those casseroles and their incredible aromas billowing from underneath a melted cheese topping. And those nuts — salty little kernels of flavor often found hiding among the decadently seasoned pretzels and cereal in everyone’s favorite snack mix.

The holidays are delicious, and food and drink are some of the many traditions friends and families have shared for generations. But, for people with an ostomy, eating and drinking around the holidays isn’t just a matter of likes and dislikes. Depending on the individual, certain things should be avoided while others can be enjoyed with no issues. The following is a guide to holiday eating (and drinking) with an ostomy.

It’s important to remember that these are general guidelines. Everyone is different, and each person experiences food differently. Consult with your physician or a registered dietician to know what’s best for you.

That being said, there’s no reason your ostomy, whether a colostomy, ileostomy, or urostomy, should hold you back from enjoying many, if not most, of your favorite holiday treats.

Maintain a Balanced Diet

Even during the holidays, maintaining a balanced diet is vital. No matter how good those sweets look, keep in mind that excess sugar and high-fat content can cause diarrhea, leading to the malabsorption of nutrients, leaving you feeling tired, irritable, and not in the holiday spirit. That doesn’t mean you need to deprive yourself, though. Just choose wisely.

For those with a urostomy, choosing non-citrus foods high in Vitamin C can lower the risk of infections. Examples of these include cranberries, broccoli, potatoes, strawberries, and leafy vegetables.

Chew Your Food Thoroughly

And while you’re at it, chews wisely too. For those with an ileostomy or short bowel, this is especially important. Both of these reduce the time your body has to digest the food you eat. Chewing your food a little extra can go a long way in helping your body get the nutrients it needs.

Eat Small Meals

Don’t forget to take breaks throughout the day to have a small meal or nutritious snack, even while you’re busy wrapping presents, decorating, and socializing. Eating several small meals is more beneficial than waiting to eat one large meal at the end of the day. An empty stomach can also be a source of gas.

Focus On Hydration

With all the hustle and bustle of the holidays, it’s easy to forget about the need to stay hydrated. That’s why it’s even more important to focus on good hydration during the holiday season. This includes drinking plenty of water while trying to limit drinks with added sugars, artificial colors or sweeteners, caffeine, or alcohol. Aim for 8-10 glasses of water a day.

Water alone won’t do it, though. Your body needs electrolytes, too. Sports drinks are a good source for this. However, you should dilute them with water to lower the sugar concentration. Electrolyte drops are also a good solution.

Low electrolyte levels can lead to many undesirable effects, including fatigue, irritability, and nausea. These symptoms only get worse the more dehydrated you get. So drink up!

If you have a urostomy, it’s crucial to drink plenty of water to avoid possible urinary tract infections (UTIs). And, since it’s recommended to consume plenty of Vitamin C, enjoy some holiday apple cider too!

Depending on the individual, certain things should be avoided while others can be enjoyed with no issues.

Ask About Ingredients

Things like casseroles, dips, cultural specialties, and cakes can often include ingredients you might not notice right away. During the holiday season, nuts can often be the biggest culprits and can cause discomfort or even a dangerous blockage for those with an ileostomy and to a lesser extend a colostomy. Other foods to be careful of are corn, if not fully ground in dishes like tamales, and dried fruits. Skip over foods, as tempting as they may be, that may include any of your trigger foods. Don’t worry; it’s ok to ask. Many people avoid certain foods for all kinds of reasons.

Know Your Safe Foods

 If you want to play it safe this holiday season, then stick to foods you know your body handles well. Consider keeping a food journal to help you keep track for next year. If you’ve recently had surgery for a colostomy or ileostomy, keep in mind these foods to avoid, but know that through trial and error you should soon feel more confident you’ll be able to enjoy most all of your holiday favorites.

 

Please read UOAA’s Eating With An Ostomy guide for more comprehensive information.

 

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

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.

Ostomates Take on Their Toughest Challenge… Kids

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

About the Ostomates:

LeeAnne Hayden @leeannehayden

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

Stephanie Bension @missbension

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

Collin Jarvis @collinjarvis

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

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

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

 

 

Celebrate World Ostomy Day at ConvaTec’s Virtual Patient Summit, Friday, October 1, 2021

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

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

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

The Patient Summit will be broken into two sessions:

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

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

Jeanine Gleba, MEd., UOAA Advocacy Manager

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

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

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

Scheduled panelists:

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

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

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

 

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

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

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

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

Scheduled panelists:

• Lorena Eltz (Brazil), Patient Advocate

• Lorraine Grover (United Kingdom), Psychosexual Nurse Specialist

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

 

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