Daily Living with an Ostomy

, , , , , , , ,

Every Individual is Unique so Don’t Put Restrictions on Yourself Based on Others

By Lisa Febre

The morning after my colectomy, the first question I had for my surgeon was “can I still do yoga?” My surgeon had a good-natured and amused response: “Please give yourself two weeks to recover from this surgery, and then you can do all the yoga you want.” He also told me that with my specific colostomy, in two weeks I could get back to my regular diet with no restrictions. (I’ve since learned those with an ileostomy have different considerations.)

Sure enough, two weeks later, once I was sufficiently recovered, I was living out his predictions. I was back on the yoga mat, twisting myself into pretzels, lifting into tricky arm balances, and standing on my head. I was outdoors hiking and running. For the first week after surgery, I was following a soft-solids diet, and by the second week I was eating whatever I wanted. By the end of the month, I was even eating Reuben sandwiches with sauerkraut!

I knew no boundaries because I had none.

It wasn’t until I joined a support group on social media that I noticed people were questioning things I was taking for granted like taking a shower, exercising, wearing pants, and eating vegetables. Are there eating restrictions for ostomates? Was it possible some people were told they could not exercise with their ostomy? The answer is …yes… ish.

Showering with an Ostomy

I was given a temporary colostomy in December 2021 when I was diagnosed with Stage-4c Colon Cancer (at the age of 47). There is no way around it: this is a big shock to the body and the mind. But the only thing I could think about was getting into the shower and washing off the five days’ worth of sweat and grime that had accumulated on my body during my hospital stay. I stripped down, my new Hollister 2-piece system hanging off of me and stepped into the shower. I didn’t think about the bag at all, I just showered like I normally did. When I was done, I dried myself and the bag off with a towel, and… that was it. I did this every single day without a second thought.

I would laugh at myself and say: it’s just poop, it’s not nuclear waste!

Weeks later, I was surprised to learn people commenting online were wrapping up their colostomy bags with layers of plastic wrap and were trying desperately to keep their abdomens out of the water. Wait… are we not supposed to get the bags wet? That didn’t sound right to me. The barrier has to be taken off with adhesive removal wipes or sprays, and even then, it can be difficult to separate it from your skin. The durable plastic receptacle bag is meant to hold all kinds of bodily fluids, it seems obvious that it should be able to handle a little soap and water. The customer service reps at both Hollister and Coloplast concurred: they specifically told me that their products are meant to be used while showering, bathing, and even swimming, with no extra accessories. Again, because no one told me I couldn’t, I was already doing these things. It was heartbreaking to see so many of my fellow ostomates avoiding basic hygiene for fear of doing it with the bag on.

It seems like the solution might be to shower without the appliance. There tends to be even more fear surrounding this practice of naked showers. Again, this was something that I had already done without asking for permission. One day I was changing my appliance, decided it would be a great time to shower, and just jumped in. The soap on my newly exposed skin felt fantastic, my stoma looked to be enjoying the water running down my belly. Naked showers were soothing and necessary for my peace of mind. I always felt the cleanest when I showered without my appliance. The skin under the barrier stayed healthy and the adhesives worked much better. Always close at hand was a disposable plastic cup filled 1/4 up with water which I used to catch any “visitors” that might erupt from my exposed stoma during my shower. I would laugh at myself and say: it’s just poop, it’s not nuclear waste!

Exercising with an Ostomy

This is something you absolutely must talk to your doctor about. I can’t give you proper advice since everyone has a different risk value for a parastomal hernia (that’s when your intestines try to push their way through the incision around the stoma). Although 50% of people with a stoma will get a parastomal hernia, that doesn’t mean you are going to get one. Your surgeon will assess your risk. I had almost no risk of one of these hernias because I was fit and active before the surgery; there was a low likelihood that my incision site would fail while I had the stoma. I was told I could begin exercising again 2 weeks post-op. Alternately, when I had my reversal surgery 10 months later, my surgeon said there is a slightly higher risk of a hernia at the closure site and wanted me to wait 8 weeks before lifting anything over 10 pounds, and that included doing yoga.

Even within one person, my risks were different for each surgery. This is why you have to have a clear assessment from your doctor and follow their directions. Some people may still develop a hernia despite following their surgeon’s directions. It’s important to question and clarify, but ultimately listen to your doctor– and not just people online, this gives you the best chance for success.

Dressing with an Ostomy

This is a tricky one for ostomates because everyone’s stoma is in a slightly different spot. I was able to wear jeans and form-fitting clothing because the location of my stoma made that possible. Someone else may have their stoma exactly where the rigid waistband of their favorite jeans falls, which can be an issue. Your clothing isn’t necessarily going to hurt the stoma, but you do need to save room for when your stoma has output. For some, tight-fitting clothing can restrict the bag, forcing the output backward toward your skin and under the barrier.

Dressing is definitely not a one-size-fits-all situation, so unfortunately no one can really give someone else game-changing advice. Be ready to experiment, but always wear clothing that makes you feel good. It was important to me to wear jeans, so I bought new jeans with a lower waistband that fell just under my stoma. Many other women invest in maternity pants. But I never left the house feeling frumpy. My colostomy was not in charge of my fashion sense, I was!

Eating with an Ostomy

Everyone has a unique reason for having an ostomy. In my case, I had my colostomy because of cancer; I had no pre-existing intestinal issues or dietary restrictions. If you are like me and could eat whatever you wanted before, chances are high that your doctor will tell you you can go back to that way of eating after your surgery. But some people, who come to a colostomy or ileostomy through ulcerative colitis or Crohn’s disease (or other gastrointestinal disease), may already have restrictions that they still need to take into consideration. An ostomy does not always magically erase your special diet for your IBD.

The general rule is however you ate before your colostomy is how you can eat now.

It does not rule you; it is not the most important thing about you, and it does not define your life.

I am vegan and I had no trouble eating any vegetables with my colostomy. UOAA’s trusted Eating with an Ostomy Guide provides info including a standard chart of foods to avoid at first with an ileostomy or colostomy – whether that is because they create stinky output, excess gas, diarrhea, constipation, or could cause blockages. Speak with your doctor and surgeon if you are unsure how to handle building your new diet. If you’re introducing new vegetables (or any kind of food) into your post-colostomy diet, just try a little bit and see what happens! If your doctor says it’s ok, don’t be afraid to try eating the old things you love, and maybe be inspired to try some new things as well. A good practice for all is to chew thoroughly and stay hydrated.

Stay Positive with an Ostomy

Some people wonder how they can ever find something positive in something so scary as an ostomy, but it can be done. You don’t need to do it in big grand gestures or sweeping alterations in your character. Just try one little switch when the opportunity comes up. It isn’t about skipping down the street singing the praises of your ostomy, it’s about finding moments when you can see the silver lining. I thought it was sort of fun to have something so unique on my body. Very few people ever get to have this close a relationship with their intestines, so instead of feeling sorry for myself, I decided to call myself “lucky” for learning so much about how my digestive tract works.

Maybe most important of all, my ostomy led me to a UOAA support group where I met some wonderful people. I have made new friends who I would never have met without my ostomy. That is something to be very thankful for.

Spend some time every day when you force yourself to not think about your ostomy. Even if it’s just 20 seconds, it is important to learn to push this thing into the background of your life. It does not rule you; it is not the most important thing about you, and it does not define your life. Stay Positive! One day, one hour, sometimes one minute at a time, but you can do this.

Learn to Take Care of Your Ostomy

Our emotional recovery depends on regaining independence. I was only 47 when I received my ostomy. I am too young to rely on others to take care of me. I laughed when the home health aide arrived and started treating me like I was 80. I was not going to lie down and become helpless. I was going to be an active participant in my own health and recovery.

Learning how to care for yourself makes you feel like a Superhero!

If you suddenly find yourself having to depend on someone else to maintain your appliance, you will feel even more out of control and worried that something might go wrong. Believe me: something will go wrong — leaks happen to the best of us, and at the most unexpected times. If you have to wait until your nurse can come to your house, or until your partner gets home from work, you will feel more helpless with each passing day. Paranoid that something terrible will happen if you get a leak while you’re alone, you may not leave the house to run errands, you may say no to social gatherings, and you may not want to go back to work.

Learning how to care for yourself makes you feel like a Superhero! I had a cool little zipper bag that fit in my purse containing a precut barrier, 2 extra bags, 2-3 adhesive remover wipes, 2-3 skin prep wipes, a disposal bag, and a travel-size PooPourri Spray. Knowing I had all the supplies I needed to do a quick bag change in a strange bathroom gave me immense peace of mind. I could change the whole system in less than 5 minutes, all by myself!

And if you need a little smile while you fumble around with your first bag change alone, just repeat my favorite mantra out loud: I got this whole thing in the bag!

 

Lisa Febre is the author of “Round the Twist: Facing the Abdominable,” a memoir about her diagnosis and treatment of Stage-4c Colon Cancer, which hits bookshelves in September 2023. She had a descending colostomy for 10-months.

Life as a Double Ostomate

, , , , , , , , ,

For people who have recently come to accept or are still struggling to manage one ostomy the news that they may need to have a second stoma and pouching system could be overwhelming. Please know you are not alone. Many people are able to thrive in life with two ostomies, or multiple diversions.

When UOAA hears from those with questions for a double ostomate we often refer them to ostomy community friend Jearlean Taylor.  Jearlean wanted to share some advice and invite all double ostomates to her talk and open discussion entitled “Life as a Double Ostomate” on August 12, 2023 as part of UOAA’s National Conference in Houston, Texas.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy.

I am Jearlean from Baltimore, Maryland. I am a double ostomate, fashion model, author, motivational speaker, entrepreneur, and ostomy advocate.

My life has had some unexpected outcomes. I guess you can say “life” happened. At the tender age of 3 years old I developed a rare form of cancer (Rhabdomyosarcoma). Because of the tumors I had to undergo ostomy surgery, which left me with two permanent ostomies (colostomy & urostomy).

If you or a child come to find you need a second ostomy my advice is to ADAPT. I had to learn to adapt. As I got older it was two major things for me to adapt; body and mind. When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors. I adapted to new ways of taking care of my body (ostomies) and keeping my mind positive. Those still adapting to having two ostomies reflect how far you have come and where you are now. Celebrate each moment.

A Common question or statement I get is “you had your ostomies that long. How did you adapt?” The moment I learned to deal with my medical circumstance when my mom explained that I was not different from anyone else. I am beautiful with my bags. I can be, do, and follow my passions and dreams. I can live a full and vibrant life. It happened just as she said. Because of what she instilled in me, I BELIEVED IT.

When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy. We are more than our ostomies.

I also try to give encouraging tips for dressing with an ostomy for comfort and peace of mind. Remember.

  • We are beautiful from the inside out
  • Work with your body type and comfort
  • Look for clothing that YOU like ,and what is comfortable for your ostomies
  • Shopping for clothing; take a family or friend along for support
  • Try on multiple items of clothing, even the clothing in your closet
  • Consider ostomy accessories (ostomy wraps, stealth belt, hernia belt, fitted tops, high waist undergarments, etc..)

We have the ability to make a difference and change lives even through our struggles. You may have an ostomy, dealing with chronic illness, feeling down and inadequate at times, but remember you are more than you have become.  Our situations, challenges, and unforeseen circumstances does not have to dictate who we are or who we can become. My purpose is to inform everyone that “life” happens to us all; good, bad, and indifferent. I want to show people even through our struggles, pain, disease, and even having ostomy we have a purpose in life.

“DIFFERENT TO MAKE A DIFFERENCE“

 

You can find Jearlean online at jearleantaylor.com and across social media. Meet her and a whole community of double ostomates at UOAA’s 8th National Conference August 10-12, 2023, In Houston Texas. 

TRAVELING WITH AN OSTOMY

, , , , ,

Since extra security precautions are still being taken at airports and other transit hubs worldwide, a little pre-planning and understanding of both security rules and your right to privacy can help you avoid problems in transit and enjoy your travels.

• TSA officers should NOT ask you to show your pouch—you may be asked to rub over your pouch outside your clothing so they can test your hand to rule out explosive residue.

• In particular, remember that all airport screenings must be conducted with courtesy, dignity and respect. You may request screening in a private area at all U.S. airports and most international destinations. If you encountered treatment outside of TSA protocol you can file a complaint, (please copy UOAA’s volunteer TSA Liaison gfsalamy@comcast.net)

A few additional tips to keep you on the go:

Carry a statement from your healthcare professional stating your need for ostomy supplies AS WELL AS a Travel Communications Card (which can be found here.)

UOAA's TSA Notification Card

TSA rules state that you can be screened without having to empty or expose your ostomy; however, you may need to conduct a self pat-down of the ostomy as a test.

NOTE: You may always have a travel companion with you during a private screening.

If you are traveling to a foreign country, bring this information written in the appropriate language. Google Translate may be helpful with translations. If you find you need additional supplies while traveling, a local pharmacy is a great starting point. The local pharmacist should be able to provide you with the necessary supplies and/or refer you to a local clinic/hospital for support.

Pre-cut all cut-to-fit barriers at home. Although current United States Transportation Safety Administration (TSA) rules allow curved point scissors with blades less than 4″ in length in your carry-on luggage, keeping your ostomy scissors in your checked luggage may avoid delay and extra screening

Consider purchasing travel insurance that guarantees getting you to a hospital, if necessary.

When it comes to supplies, OVERPACK! Better safe than sorry. Pack at least three days’ worth of ostomy supplies in your carry-on luggage, just in case your checked luggage is misplaced or there are delays and/or non-availability at your destination.

Drink, drink, drink. Nothing slows down a vacation more than dehydration.

If traveling by car, take advantage of rest areas. Stop and empty your pouch regularly; you never know how far it will be until the next one!

Pack ostomy-friendly snacks.

Keep a set of clean clothes handy whether in your carry-on luggage or in the trunk of your car.

Carry a few plastic bags and wet wipes for quick clean-up.

The idea of taking long trips with an ostomy can seem daunting. But with a little extra preparation, you can enjoy the trip of a lifetime.

 

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

5 Reasons It’s Awesome to Have an Ostomy During the Holidays

, , ,

By Robin Glover

The holiday season is here! Yay! It’s a wonderful time to build lasting memories and celebrate shared traditions. The holidays always bring people together.

But is that always a good thing? In spirit, yes. But in practice…maybe not. There are crowds at the mall, long lines at the store, endless Amazon deliveries, presents to wrap, meals and small talk to make, and on top of it all, they want us to look nice and show up to parties, too.

All this bringing people together can be a bit much.

But what if you could find peace and serenity almost anytime you want? What if you could enjoy a few moments of quiet solitude among the festive chaos?

Well, if you’re lucky enough to have a colostomy or ileostomy, you have that power. And it’s just one of the ways having an ostomy during the holidays is pretty awesome.

  1. Instant Peace and Serenity

So Uncle Bob had a little bit too much eggnog. And now he’s passed out on the couch ripping off farts that would put a skunk to shame. Nobody wants to be near him.

But deep down, everyone’s a little jealous. He’s over there in his own little cloud getting some much-needed peace and quiet.

The problem is that Uncle Bob can’t control when he lets out a little gas. But, we ostomates with an ileostomy or colostomy can! We can have our own little cloud of solitude at the ready for when we need a little time alone.

Simply “burp” your pouch and suddenly the room empties and you’re surrounded by nothing but instant peace and serenity. Ahh…the joys of being an ostomate.

  1. Get in the Holiday Spirit

Those beige pouches can be a little drab. But there’s nothing a little holiday decorating can’t fix. No matter your type of ostomy or what holidays you celebrate, a few battery-powered lights and some glittery garland can turn you into a walking celebration of the medical miracle you are. Of course, premade holiday-themed pouch covers such as those pictured from C&S Pouch Covers, or several Etsy shops, could do the trick as well.

C&S Pouch Covers Gingerbread Holiday pouch cover

People will be totally jealous. They’ll wish they had an ostomy pouch to decorate. But they’ll just have to stick to ugly sweaters they got off Amazon like everyone else…boring.

  1. Last-Minute Stockings

Oh no! The dog ate Bailey’s stocking! Where are you going to put those awesome stocking stuffers you got them? You search around the house and can’t find a sock or a bag worth using.

You hear a commotion. Are the kids up already? You gotta hurry. Then, you remember that order of ostomy supplies that just came in. A pouch will be perfect! So you run to your supply stash and grab one.

Throw some candy in it, add the yo-yo and animal erasers, and you’re saved! Thank goodness for ostomies!

  1. Let It Go! Let It Go!

It’s last-minute gift buying time. You’ve been waiting in line for twenty minutes and then those dozen latkes or half-gallon of cider suddenly kick in and you need to go to the bathroom. Now, most people would either have to hold it not knowing when they’ll finally get to go, or get out of line and rush to the restroom.

But not you. Luckily, you can just go while you’re in line! Of course, this only works 50% of the time depending on whether you have a urostomy or colostomy/ileostomy. Unless you’re lucky enough to have both!

  1. Let It Signify Your Resilience

Your ostomy is a symbol of all you’ve been through and the faith, fortitude, and resilience it took to get through the toughest times.

So when you do actually get a quiet moment to reflect during the holidays, remember how far you’ve come and that you’re an inspiration to those around you.

Even if you didn’t welcome it or are having a difficult time right now, look at your ostomy as the reason you get to experience everything, good or bad, that the holiday season has to offer. Because an ostomy truly is a gift and, as an ostomate, your life is the greatest gift of all to those who love you. You are a miracle.

 

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

 

Diet and Digestion with an Ostomy

, , , , ,

Twelve years ago, Sarah had ileostomy surgery after living for years with ulcerative colitis. Ostomy surgery has allowed Sarah to get back to eating foods she loves, and she says “it has been the best thing for me.”

Sarah now eats many of the same things she did before her ileostomy and enjoys them more than ever. Here are some tips that Sarah has learned over the years for eating, digestion and activity.

  1. Drink up. Hydration will always be an issue, so drink lots of water. I like to toss in a slice of lemon for a little extra flavor.
  2. And chew some more. If it looks the same coming out as it did going in, you need to chew those foods better.
  3. Start slow and build up. If you’re right out of surgery, you might be more sensitive to foods than you will be six months down the road. Use trial and error to see how foods work for you and be sure to track the results. If you’ve had ileostomy surgery, add high-fiber foods back into your diet gradually to make sure you can digest them well. These include raw fruits and veggies (especially with skins), nuts, seeds and popcorn.
  4. Input always makes output. With an ileostomy, your stoma is going pretty much all the time, so it’s important to track and manage your input and output. For example, if I was going on a job interview, I would not eat a big meal right before, because my stoma may create output and my pouch would fill up – and you don’t want that during an interview!
  5. Do what you love! I go on bike rides, I go boogie boarding. It may take a little time and tracking to know what works best for your body, but you can do all those things and keep your stoma safe.

Sarah, with the help of the My Ostomy Journey App, now has the ability to track everything digitally. She can also use the app to contact someone for additional support, or if she has any questions.

Sarah says, “The My Ostomy Journey app makes it easy for us to keep track of whether we’ve had enough water or what foods we eat. I wish I’d had this resource right after surgery, especially when I was first figuring out what does and doesn’t work for my body!”

 

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

Get Answers and Find Friends at the Virtual Ostomy Symposium

, , , , , , , , ,

By Robin Glover

Ostomy surgery is a life-changing event. As ostomates, we go through things other people will never have to experience. Everybody’s story is different, but we have all shared in many similar aspects of our journeys. We are a unique community of strong and courageous people of all ages and backgrounds.

To celebrate that, United Ostomy Associations of America is hosting the UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13, 2022 from 10:30 a.m. to 5:30 p.m. Eastern Time (7:30 a.m. to 2:30 p.m. Pacific) including breaks.

This symposium will feature a mix of ostomates, j-pouchers, and medical professionals delivering a fun, engaging, and informative day of learning, laughing, and community-building.

Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered.

In all, 22 speakers will be bringing their expertise on a variety of ostomy-related subjects. (And don’t worry, each session will be recorded so if you can’t make it live that day or can’t see all of the ones you want, you’ll be able to watch them later.)

You can find the full list of speakers and the agenda here.

What to Expect

The virtual lobby will be open at 10:30 AM EDT before the speaker sessions begin to chat, troubleshoot any tech issues and explore the agenda. Ticket holders get an email with a unique link to the event. Attendees are encouraged to enter “lounges” organized by ostomy or continent diversion type (and one for caregivers) to chat or meet with others like you. These will be open for the entirety of the event for those who want to pop in and out during breaks.

Sponsor Booths will also be open throughout the event to give ticket holders the opportunity to talk with representatives of ostomy product manufacturers and suppliers ­– and learn about the latest product advancements. Thanks to all our symposium sponsors including Platinum Sponsor Convatec for helping to make this event possible.

The most important participant for this year’s UOAA Virtual Ostomy Symposium is you.

After opening remarks from UOAA leadership, the symposium will kick off on the Main Stage with Louie Green, a standup comic and recent ostomate. He’s going to share his poignant ostomy journey with a bit of welcoming wit.

Next on the Main Stage at 12:40 AM EDT, Joy Hooper’s Ostomy BUZZables presentation will present the newest innovations and ostomy products available on the market. If there’s something new in the ostomy world, you’ll hear about it here.

Educational Sessions 

Throughout the day, Educational Sessions will run concurrently between the Main Stage where you’ll get to hear from wonderful WOC nurses, experienced ostomates, amazing doctors and dedicated advocates.

Presentations will cover everything from sex and intimacy and traveling the world with an ostomy to nutrition and staying hydrated and dealing with hernias. Other session topics will focus on peristomal skin issues, aging in place with an ostomy, affiliated support groups, and secrets of the big four stoma types.

There will also be a special workshop for young adults. Inspiring ostomates Molly Atwater-Pulisic and Collin Jarvis will be co-hosting the conversation about physical activity, relationships, and mental health for ostomates ages 18-35.

Attendees will be able to submit questions for the speakers during the presentations and the speakers presentation materials will be available to access at you leisure.

After these educational sessions be sure not to miss Dr. Janice Beitz back on the Main Stage at 3:55 PM EDT for a presentation titled If You See a Toilet in Your Dreams, do NOT use it! Emotional Support, Quality of Life and Humor. It will look at the power of humor in dealing with emotional challenges while dispelling some myths and misconceptions about ostomies.

The event will come to a close with a special presentation from Magen Cherry, a j-poucher and winner of the 2007 Miss Texas USA competition. She uses her platform to share encouragement and bring hope to fellow ostomates and j-pouchers coming to terms with their new reality. Fun fact: Magen had a colonoscopy three days after being crowned Miss Texas USA!

Connecting with a Caring Community

Of course, there are going to be plenty of great speakers but the most important participant for this year’s UOAA Virtual Symposium is you. By taking part in this event, you’ll be able to connect with a thriving ostomy community (or j-pouchers or any other type of continent diversion) and help us grow even stronger.

As we all know, living with an ostomy or other continent diversion isn’t always easy. It can be isolating. Sometimes even close friends and family don’t want to hear anything about it. There’s fear of the future and worry about existing relationships.

Many new ostomates want to hide it forever and hope no one ever finds out. But, through organizations like UOAA, they’ll find out they’re not alone and that life with an ostomy shouldn’t be something to be ashamed of, but rather that ostomies are life-savers and that you can join others in a celebration of being alive.

This year’s event is going to be awesome. Questions you were too afraid to ask will be answered. Questions you didn’t even know you had will be answered. You’ll get to connect with wonderful people while gaining inspiration and knowledge that could impact the rest of your life – and the lives of others.

As you can see this is not your typical webinar or Zoom call and the $35 ticket (plus $3.88 processing fee) and sponsor support of UOAA (a 501(c)(3) charity) help to offset the costs of hosting this special event.

All of this is leading to UOAA’s in-person National Conference in Houston in August of 2023. The connections you build during this year’s virtual event can open the door to even deeper friendships when we all get to meet each other face-to-face next year in Houston!

The UOAA 2022 Virtual Ostomy Symposium on Saturday, August 13th is going to be a great time and a great experience. And we need you there to make it even better.

To get all the information, learn more about the speakers, or find out how to get tickets, head to the event website.

LeeAnne’s Healthy Eating and Fitness Tips for People With Ostomies

, , , , , , ,

Actress, model, businesswoman, and cancer survivor LeeAnne Hayden shares diet and fitness tips that can help you live your best life with an ostomy.

Learn simple lifestyle changes you can make to improve your health and wellness.

Living a healthy lifestyle. We all know we should be doing it, but sometimes it’s not so easy – especially after having ostomy surgery. When it comes to eating and exercise, we’re worried about the possibility of blockages and hernias. I get a lot of questions about those issues.

I have had my colostomy for over six years now, and after doing a lot of testing of what my body can and can’t tolerate, I feel great. Regardless of any concerns you may be experiencing, it is so important to live a healthy lifestyle. When we feed our bodies the right foods and move our bodies with exercise, over time we will see, and more importantly FEEL, the positive results.

6 Tips for Healthy Eating With an Ostomy

So, what do we do? Our Moms always said, “Eat those vegetables and have an apple!” However, most of us must watch our fruit and vegetable intake so that we avoid intestinal blockages. Here are six tips that can help you eat well and safely:

  1. Cook your fruits and vegetables. When foods are cooked, they are easier for the body to break down. Try sautéing, baking, or even air frying your favorite fruits and vegetables. I am constantly sautéing spinach, red peppers, onions, and mushrooms, and then tossing in some lean protein and jasmine rice or sweet potatoes to complete the meal.
  2. Blend your fruits and vegetables. After every workout I have a protein smoothie. I combine one cup of unsweetened almond milk with one scoop of vanilla whey protein, a handful of spinach, a half of a banana, and one tablespoon of peanut butter.
  3. Chop your salads. The smaller the pieces, the easier they are to digest. I’ve been loving the bags of pre-chopped salad that are in grocery stores now.
  4. Take a digestive enzyme after a meal. These supplements can help your system break down vegetables and fruits even more.
  5. Chew slowly. Our lives are so busy that when we sit down to eat, we often don’t take our time. Slow down at the table and chew your food more. This will help you digest it better.
  6. Keep a food log. Writing down what you ate and how it made you feel will help you make better choices.

Be sure to check with a dietitian about what foods you can safely eat. For example, mushrooms can cause intestinal blockages for some people living with an ileostomy.

3 Tips for Exercising Your Core After Ostomy Surgery

When you have an ostomy, working on your core is important. It can be scary prospect, however, since the fear of getting a hernia is a real thing. So, always check with your doctor before starting any fitness program.

Core exercise is great for improving pelvic floor strength, posture, and balance. It also can help prevent ostomy bag leaks because the flange will fit better on your peristomal skin.

Here are three gentle core movements that you can do to help strengthen your core:

  1.  Standing single knee lift. Stand with your feet hips-length apart, and your hands on your waist or down by your side. Tense your abdominal muscles and lift one knee. Do as many as you can or three sets of 10 to 20 on one side before moving to the other side.
  2.  Holding a plank position. Planks put less strain on your spine and hip flexors than abdominal crunches or sit-ups. A beginner version can be done against a piece of furniture (e.g., a chair or a low table). Place your forearms on the furniture, keep your back flat, don’t sag into your forearms, keep your core tight, and hold that position for 15 to 30 seconds. The further away your legs are from the furniture the more activated the core will become. Advanced options are done on the floor. Put your hands directly under your shoulders, grind your toes into the floor, and tighten your gluteal and core muscles. Neutralize your neck and spine by looking at a place on the floor about a foot beyond your hands. Hold this position from 20 seconds to two minutes.
  3.  Stomach crunches. Lie on your back with your knees bent to a 90-degree angle and your feet on the floor. Make sure your back is flat. Squeeze in your abdominal muscles and bring your head to your knees. Your glutes will try to play too, but don’t let them. Focus solely on your abs, hold for three to five seconds, and then release. Do three sets of 10 to 20.

I hope these wellness tips have been helpful to you! Share with us on social media your favorite fruit and vegetable recipes, and what you think of these moves!

To learn more about LeeAnne Hayden, listen to The Beautiful Bag podcast, visit leeannhayden.com, or follow @leeannehayden on Instagram, Facebook, and YouTube.

People who provided testimonials received compensation from Hollister Incorporated. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person.

 

Editor’s note: This article is from Hollister Incorporated, a digital sponsor in support of the free online resources of ostomy.org and UOAA, a 501(c)(3) nonprofit organization.

My Life with an Ostomy- Josh

, , , , , , ,

Are you a new ostomate? Or a soon-to-be ostomate? No matter how far you are in your ostomy journey, adapting to your new situation is an inevitable part of the process. Talking to others who have already been in your shoes can help you in adjusting to this time of your life. That’s why we asked Josh Nelson, the first active-duty U.S. Airforce Pilot living with an ileostomy, to share his story and his experience with his ostomy journey to give insights on how getting an ostomy can be just the beginning of an exciting new chapter.

Before surgery

What was your life like before your ostomy surgery?

I was diagnosed with ulcerative colitis in November of 2017. Throughout the next year after my diagnosis, I tried maximum medical therapies starting with oral medications, then biologics, and then transitioned to combination therapies with biologics. Unfortunately, my body just did not respond to the medications, and the disease just took over my life. If you want to talk about quality of life with ulcerative colitis before I had the surgery – I didn’t have one. I was 145lbs. I was having 18 to 20 bowel movements a day. I wouldn’t leave my house. I knew where every bathroom, rest stop, and gas station were from my house to where I work. Any time I did leave the house, the only thing on my mind was, “Where’s the bathroom?” in case I had that sudden urgency to go. My wife and daughters left me alone. They wouldn’t even ask if I would go with them anywhere because they just knew I did not want to go anywhere. I had no quality of life. I was a prisoner in my own home, and that’s no way to live your life.

How did you feel when you learned you would be having ostomy surgery? What questions of fears did you have?

I made the decision to have an ostomy surgery in November of 2018, and I had about three days’ notice before the surgery was going to take place. The staff at the University of Minnesota Medical Center, where I was inpatient for 30 days prior to surgery, did a great job of introducing what life with a stoma will be like. My questions were, “What is a stoma?” “What are the appliances that I’m going to have?” “How do I care for this thing, and how do I recover?” and  “How do I slowly adapt to having an ileostomy and then getting my life back?” The WOC nurses were great, because they would just simply start to explain, “Oh, here’s what a wafer or barrier looks like,” “Here’s what a pouch looks like,” “Here’s what some of the accessories are.” They also explained, whether it’s ileostomy, colostomy, or urostomy, people do go on to live fully functional lives.

I definitely had some goals, but I had no fears when it came to having the surgery. I mean, okay, fine – I had maybe a couple fears of having surgery, but the stoma itself I was not afraid of. The reason for that is because I was kind of at my lowest of lows, and I thought to myself, “How could this be any worse than what I’m dealing with right now?” I remember my surgeon and the medical staff told me that once the surgery was done, I would no longer have the pain, and each day moving forward I could start to focus on getting my life back.

What advice do you have for people who are considering ostomy surgery?

My advice to anybody who is considering having the surgery is to keep an open mind. It will take some work. You will need to adapt to what you have. That means taking care of yourself physically, mentally, and emotionally because it is a step-by-step process. It is a big transition, but I’ve done everything I could to make sure my quality of life has improved. I do not regret my decision one bit. I have my life back and that’s what I think is most important.

Coming home

What was your experience like right after your ostomy surgery?

I had about five days in the hospital after surgery, and during that time I was focused on recovery, protecting my abdomen, and getting my strength back. The nurses did a great job of explaining step by step what it takes to change out the pouch and care for my stoma. Before I left the hospital, I needed to make sure that my pain was under control, starting to move around, and understood how to change my appliance by myself.

What were your goals after your surgery?

I focused on transitioning to home life again, figuring out how to slowly heal my body, and how to start eating foods again.

My goals were:

  1. Getting healthy food into my body so that my body can recover.
  2. Finding out what schedule I should be on for changing out my appliance.
  3. Observing my stoma area regularly to keep my skin healthy, prevent skin breakdown, and make sure that my stoma was healing properly.

What would you tell someone else returning home from their surgery?

  • Don’t be afraid of touching the stoma because your stoma doesn’t have any nerve endings you can feel.
  • It’s extremely important to have a solid understanding of how to change your pouch and ask for products before you leave the hospital.
  • Your WOC nurse will probably explain that what works best for you in the hospital may change after you go home and are healing up. Initially, it might be multiple times a week that you’re changing your whole appliance out because your abdominal area might’ve been swollen from the surgery, and as it starts to reside some of those wafers might fit differently.
  • Everybody’s different. Everybody responds to products differently. Those first couple of weeks to a month is just trial and error to find out which products work best for you. After you figure out your change routine, your quality of life can start to improve. You no longer need to worry about having multiple leaks or having multiple issues with your appliance, and you can start to focus on making other goals for your life with an ostomy.
  • Just take it day by day. Don’t think of the end state right away because it’s going to take time to get there. Create small goals on a day-to-day basis and then think long term and how to get there. It’s definitely a marathon; it is not a sprint. You’re going to learn something new every single day until you get comfortable living your life and understanding how to handle your ostomy.

Managing life with an ostomy

How has your life changed now that you have an ostomy?

I’ve had my ileostomy for over three years, and I can honestly say I haven’t looked back or had any regrets whatsoever to surgically remove my colon. I try to tell people my worst day as an ileostomate far exceeds my best day ever living under the umbrella of Inflammatory Bowel Disease. I am no longer bound by any type of medication. I have no special diet, nor do I have any restrictions, and my quality of life is through the roof. I could not be happier, and I do not regret the decision one bit whatsoever. But how did I get there?

First off, I accepted the fact early on that I was going to have an ileostomy for the rest of my life because it was a decision I made for a better quality of life. After accepting it, I could focus on moving forward versus dwelling on the “how’s” and “why’s” with ulcerative colitis.

Secondly, after trying multiple different products, I came across a Coloplast product that worked really well for me. Once I found the product that worked well for me, that gave me the confidence to continue moving forward with my life and not have to worry about having leakage or skin issues. I have a couple routines, I’ll change my pouch no more than twice a week, but no less than once a week. I observe how the wear and tear of my wafer and appliance is working.

On top of that, I wanted to do everything that I could to make sure that I am living the best life that I can. I made some personal decisions, such as eating better and taking care of myself. I exercise quite a bit, and I try to eat fairly well. I try to focus on eating healthy foods so I can get the nutrition that my body needs.

What are some other tips you want to share about managing life with an ostomy?

It’s important to understand that this affects everybody differently, and it’s up to you to determine what works best for you to adapt, overcome, and live your life with any type of ostomy. I reached out to local support groups, and I think that’s extremely beneficial because you get connected with like-minded individuals. No matter whether they have a colostomy, ileostomy or urostomy, you can touch base with them and share your fears and concerns. A lot of these people have lived decades with their ostomy, and they’re proof to you that you probably can too. Finding that help and resource is extremely beneficial in helping you understand how to navigate life now that you have an ostomy and what’s out there for you.

 

I hope this helped you to understand what it was like to be diagnosed with the disease, have a permanent ileostomy, and how I live my life moving forward. Thank you! -Josh

 

 

*Josh 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 professional about which product might be right for you.

At Coloplast, we strive to provide innovative solutions to support people with intimate healthcare needs and make their lives easier. Now, we’ve got an app for that!

If you’re looking for additional support during your ostomy journey, download MyOstomyLife by Coloplast® Care. The app is designed to help you be successful and build confidence in managing your ostomy by providing you with personalized tools and resources for your daily life with an ostomy.

With MyOstomyLife, you can create a digital stoma journal to track your pouching changes over time and easily download to share with your nurse, if requested. The app also provides you with educational resources offering reliable product and lifestyle advice, tips customized to your ostomy type, and inspirational videos from other ostomates like Josh.

You can also easily contact one of our Coloplast Care® Ostomy Advisors for product and lifestyle support within the app. We’re here to help!

Download MyOstomyLife for free on your smartphone or tablet today to get started!

Have any questions about the app? Visit Coloplast® Care at www.ostomy.coloplastcare.us or call

1-877-858-2656.

Information provided in the app and from Coloplast® Care is for educational purposes only. It is not intended to substitute for professional medical advice and should not be interpreted to contain treatment recommendations. You should rely on the healthcare professional who knows your individual history for personal medical advice and diagnosis.

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.

 

So You’re Getting an Ostomy

, , , , , ,

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?

, , , ,

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.