Tag Archive for: ostomy bag

So You’re Getting an Ostomy

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By Robin Glover

Oh no! An ostomy! You’re going to be pooping or peeing into a bag attached to your stomach?? Your life is over, right? No more dating. No one will ever like you. Children will run from you! It’s so gross!

Don’t worry. We’ve all been there. As great as they can turn out to be, the idea of getting an ostomy is never really welcomed news. Add on to that, you’re probably very sick and haven’t eaten well in weeks and you’re tired and worried and feel alone. You know nothing about ostomies and are wondering what life will be like with one.

Will having an ostomy bag eventually become second nature and you won’t even really think or worry about it? Yes.

First of all, life is going to be great! You’ll feel better. You’ll eat better. You won’t be bleeding out of unspeakable places and constantly panic-stricken about finding the nearest bathroom. Your life will become more consistent and routine and you’ll end up being happy you had a lifesaving, life-improving surgery.

It’s possible that you don’t believe that right now, though. And while it does turn out to be a good thing for most, there is an adjustment period and a lot of unknowns and myths. For instance, how do I change my ostomy bag? Will I stink? What if I have an accident in public? Can I ever play sports again? Or exercise? Or go swimming?

In short– is it easy? No. Will it be fine? Yes, yes and yes. But for a little expanded information and peace of mind, we can go into a little more detail.

How Do I Change My Ostomy Bag?

You gently peel it off, wipe things off a bit, and put another one on. It really does become as simple as that. But, at first, you’ll hopefully have a specialized ostomy nurse that will teach you how to do it. After your surgery, you likely won’t have to change it yourself the first several times. But, you should practice doing it and will be better off if you make the effort to know how before you leave the hospital. It also helps to know what the standards of care should be for ostomy patients and speak out before you are discharged and sent on your way.

If you did not have access to a certified ostomy nurse in your hospital be sure to seek one out. You can also find a Wound, Ostomy and Continence (WOC) Nurse or an Ostomy Management Specialist (OMS) through product manufacturers and telehealth services.

Will My Ostomy Bag Leak?

At first, Yes. It likely will. You might even get really frustrated in the beginning because you can’t seem to put it on as well as the nurse in the hospital. Even if you put it on “perfectly” and follow all the steps your ostomy pouch can still leak. You’ll get the hang of it, though. Every ostomy and everybody is different. You’ll learn what supplies you need, where to get them, and how to use them to make sure the fit is just right.

While you might be hesitant to leave the house for a while, you’ll soon feel totally confident going anywhere you want, any time you want. And better yet? You won’t be constantly worried about being near a bathroom! There’s always the risk of a leak, though. But it won’t be a big deal. You’ll be able to detect it quickly and take care of it.

Will I Smell?

No. If the appliance is attached correctly, you should never stink. No one will be able to smell you. You can be as close as you want to other people. You can go out and be in a crowded bar and nobody will know you have an ostomy bag. There are also plenty of clothing and garment options to fit well with your pouch and conceal it from anyone ever knowing – if that’s how you choose to approach it.

If you do ever smell, that means you need to check your pouch for any leaks or openings allowing odor to escape. And if you happen to be in public, you can carry tape or any of a variety of things to sneak off into the bathroom and do a quick fix. Will it be uncomfortable or scary the first time it happens? Yes. Will having an ostomy bag eventually become second nature and you won’t even really think or worry about it? Yes.

(Quick note: The answer to a lot of questions about having an ostomy is that “you’ll figure it out” or “you’ll become comfortable” because everything will be new when you first have an ostomy bag. There’s no step-by-step guide. There will be frustrations. Maybe some tears. It’s an adjustment. Nobody just has ostomy surgery, learns to put on a pouch, and then goes about their business. You will have issues. You may have some stained clothes and probably need to change your bedsheets one or two times. But, you will figure it out.)

Can I Do Whatever I Want?

Generally speaking, yes. Of course, this depends on every unique situation, and only you and your doctor can accurately answer this question. But, in general, you’ll be able to do whatever you want. Simply having an ostomy won’t restrict you from doing anything. You might even be able to do a whole lot more than you could before.

You’ll be able to go swimming, play rugby, do mixed martial arts, teach yoga, travel the world, go on dates, and do anything you were physically capable of before having surgery. All without worrying about being in constant pain or eating the wrong thing or needing to run to the bathroom every five minutes. However, make sure to wait 6-8 weeks or until your doctor approves you for any strenuous physical activity before winning the local 5k again. (Perhaps you’ll even want to take part in UOAA’s own Ostomy 5k.)

Getting An Ostomy Is Totally Worth It

All the details about how to change your ostomy pouch where to get supplies, and when you can go back to doing the things you love will get worked out. But the important thing to remember is that having ostomy surgery is going to be totally worth it. Even if your head is spinning now about what life will be like, it will calm down.

And also remember that you’re not alone. One of the best ways to prepare is to call or visit an ostomy support and information group before you have surgery. Many others have been through the same process and are more than eager to offer a listening ear and emotional support. UOAA also offers a new ostomy patient guide and has tons of online resources to get you started on the right path.

You’ll get the hang of everything, then look back and be so grateful that you are a warrior. Countless other ostomates will tell you the same thing. That is, when they’re not busy living an incredible life they wouldn’t have otherwise.

You got this!

 

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

Do I Have a Parastomal Hernia?

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By Robin Glover

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

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

What Is a Parastomal Hernia?

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

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

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

Dealing With a Parastomal Hernia

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

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

Preventing a Parastomal Hernia

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

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

How Do You Fix a Parastomal Hernia?

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

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

 

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

Sixty Years with an Ostomy

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By Ed Pfueller, UOAA Communications Manager

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

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

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

“It was just not something people talked about,”

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

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

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

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

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

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

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

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

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

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.

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.

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

 

 

Jasmine’s Story

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A year with an ostomy provides challenges and blessings

My name is Jasmine and I was diagnosed in 2016, at the age of 23 going on 24, with stage three colorectal cancer. I am a survivor. I went through multiple surgeries, chemo, radiation, and an ileostomy.

Many people think that having to wear an ileostomy bag would be unpleasant and very difficult. There is some truth in that at first, but I learned on the journey that it was a blessing.

Without an ileostomy, I would have not have been able to have my cancer (tumor-size of a peach) taken out. Without having my cancer out, I might not be here today. There are challenges that I faced such as my bag leaking. There were some nights when I would wake up and the stool would be everywhere. It was very frustrating but I managed to get through. One day I asked myself, “is this life?” Just like anyone else I would feel down. I knew it was ok to go through the emotions but I started praying to God that things would get better. My faith, family, and friends is what got me through.

Once I explained to my treatment team about what was going on, they insisted that I have a nurse come out two-3 days out of the week to help assist with my ostomy. Thanks to Johns Hopkins in Baltimore, they gave me resources as far as where to order good quality bags that were covered by my insurance and I ordered from a supply company. They started by giving me free samples to try and then I started to order them frequently because I liked the quality and they also provided a kit that included scissors, ostomy bag holder, and barrier rings. The scissors were for me to cut the baseplate to get it to the exact size of my stoma so that it could fit properly. This was all new to me but in due time it became the norm.

The barrier rings were great because it is what protects the skin because I had issues with my stool getting on my stoma. Whenever the stool would rub on my stoma it would burn so the rings help protect the stoma and leaks.

I do not regret anything I went through though because I came out a stronger person.

The advice I’d share would be to empty your pouch on a regular schedule to avoid overflows. I ate small frequent meals because I notice when I ate a lot, my bag would fill up. Make sure you’re drinking enough fluids throughout the day as well. I had to Introduce foods to my diet one at a time to determine how it would feel. I always made sure that I had bags everywhere I went.

I had the ileostomy for almost a year and I was told that it did not have to be permanent unless I developed problems down the road. In April of 2017 I was able to get it reversed (taken off).

Some other challenges from the cancer were that I had a section of my rectum removed and one of my ovaries removed. I cannot have kids on my own because both of my Fallopian tubes were removed as well so I will have to go through a surrogate, knowing this, I chose to freeze my eggs.

Being that a part of my rectum was removed I have complications from time to time. I am now 29 and although I still have complications I’m so happy to still be here and share my testimony with others as well as help any others who are encountering the same illness.

My recommendation to others with an ostomy and going through this process would be to be confident in your bag. I never looked at myself as disabled, I wore my bag with pride. There were a few times when I made a design on my bag to make it my own.

One thing I went through was being able to see who my real friends were through this process. I lost some friends in the process but gained even better friends. I had trouble dating due to the fact that people were intimidated by my bag and everything I had to go through.

I do not regret anything I went through though because I came out a stronger person. Life is too short to be down, I survived cancer, I was almost at the end of the road. I was in way too deep to just give up. Do not give up, I want those who see my story to reach out to me if they need to vent. It helps to talk to someone who actually went through the same experience.

With the help of my family real friends, and God I was able to go through this process gracefully.

Fashion with an Ostomy

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Ostomates often struggle with fashion and feel their options are limited. Without a doubt, part of the journey to adjusting to your ostomy is finding ways to dress yourself that is both comfortable and still allows you to express your individuality. This was no different for Deirdre, who felt that her passion for fashion and style were taken away from her after her ostomy procedure.

Fortunately, clothing designers have recognized that women come in all shapes and sizes, so you can now find pants with a variety of waistline heights. This allows you to find a style to fit your body and your needs. For active wear, consider wearing yoga pants or stretch pants to help support the pouch during exercise. You might also try biker-style shorts since they can be worn alone or layered under shorts, exercise pants or other stretch pants.

Part of adjusting to an ostomy also includes finding the right pouching system that fits you as well. With the help of her stoma care nurse, Deirdre found a pouching system that worked for her, and she regained the confidence to go out, go to work, socialize with her friends, and do all the other activities she dreamed of being able to do when she was in the hospital. For Deirdre, fashion and style are important aspects of her life, so having a pouch that works with different outfits allowed her to feel like herself again. Her journey with chronic illness and living with a stoma has become so much more about self-esteem, body image, and loving herself. According to Deirdre, “Once I went out and started getting back to normal life again, no one ever would’ve known that I had a stoma, because the bag was so easy to wear and was hidden under my clothes.”

Deirdre found a discreet pouching system that fit her well and gave her a feeling of security, which helped her regain the confidence to leave the house in skinny jeans, or even sports leggings. Finding a pouching system with the right fit to Deirdre’s body meant having the confidence to socialize again. Although there may be some styles of clothing you want to avoid after surgery, you still have many choices open to you. See which styles you like the best, and which you find most comfortable. Every body is different and finding the right fit can make the difference between confidence and insecurity.

 

*Deirdre is a Coloplast product user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

Call your healthcare provider if you have any medical concerns about managing your ostomy. You may also contact your Coloplast® Care Advisor for product usage and availability questions at 1-877-858-2656.

Prior to use, refer to the product ‘Instructions for Use’ for intended use and relevant safety information.

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.

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