“So, You Have an Ostomy”: Tips for Travel, Diet, and Bag Changes—Part 2

Navigating life with an ostomy takes patience and persistence. The adjustment is not only emotionally and mentally taxing for many, but the physical day-to-day takes some getting used to as well. In Part 2 of “So, You Have An Ostomy,” I interviewed ostomates about everything from diet, to bag changes, and how best to pack when you’re away from home. It’s my hope that by hearing these words of wisdom, that you’ll feel better equipped and more at ease should you need to make these lifestyle changes for yourself.

Discovering Your “New” Diet with an Ostomy

After ostomy surgery, it’s recommended to stick to a low residue diet for about six-eight weeks. Once you reach that point in recovery, work with your surgeon and GI dietitian to reintroduce foods one by one to see how you tolerate them. Hydration is key every single day. When you are outdoors or more active, you will want to make sure you hydrate before, during, and after, not only with water, but having some sodium and sugar in your system for better absorption. This can either be a homemade mixture, powders (ex. DripDrop, Liquid I.V.), or premade drinks (ex. Pedialyte, Metamucil Water, or Gatorade). Ultimately, you want to keep a pudding consistency of output.

If you’re eating high fiber foods like nuts and raw veggies and fruits, ensure you are chewing well, eating a bit slower, and drinking water throughout the meal, as these foods are harder to breakdown.

Sahara Fleetwood-Beresford, 32, of the United Kingdom, was diagnosed with ulcerative colitis at age 19. Since then, she’s had three stomas. When it comes to diet with an ostomy, it’s very much trial and error, like it is with IBD. For many, marshmallows, unsweetened applesauce, and peanut butter are the ‘go-to’s’ to thicken output, but unfortunately those don’t do the trick for Sahara.

“My main piece of advice is not to be afraid of trying things. If you chew thoroughly, that minimizes the risk of blockages. Your stoma will be settling in for up to twelve months, so if something doesn’t agree with you in the beginning, try it again later. My diet is healthy now, thanks to my stoma. I can eat all of the fruits and vegetables that I couldn’t eat before due to pain caused by strictures.”

Karin Thum, 42, of Florida, battles not only Crohn’s disease, but Spina Bifida. She says an ostomy isn’t as bad as it seems and that in time, you’ll find it’s the best thing you could have done for your health and your quality of life. When it comes to her top dietary hack she says, “I’m a salad girl. I learned from my doctor to use scissors to cut up lettuce so that it’s easier to digest. This way I don’t have to give up eating salad completely and can enjoy one of my favorite foods in moderation.”

For Andrew Battifarano, 26, of New York, he noticed he has higher output after having a sugary drink, like soda. Steering clear of these has helped his bag from filling up so quickly.

“At the same time, I try and have as much water I can tolerate. You can easily get dehydrated without even realizing it (I have and it’s not fun), so staying on top of that is super important. And eating less at night, or having smaller meals spread out will make you have less output when you’re sleeping, which might help prevent any leaks and also let you sleep longer without having to get up during the night.”

Tim Albert, 32, of Wisconsin, received his ostomy this past November. If he ever feels dehydrated, he swears by DripDrop ORS. He says if he drinks 16 ounces of water with DripDrop he starts feeling better in 30 minutes.

“As far as output, I’ve learned to think of things the same way a diabetic might manage their blood sugar. If I eat something that will water down my output, I need to counter it with something that will thicken it. Foods are going to be different for each person, but for me, I am able to thicken things up with apple sauce. I like to buy the little pouches; they are great for on the go.”

Sarah Byrd Vihlen, 33, of Georgia was initially diagnosed with ulcerative colitis in January 2014, but has since been switched to Crohn’s. She underwent subtotal-colectomy surgery right after bringing her two-year-old daughter, Penelope, into the world via c-section. Talk about a rockstar IBD mom. When it comes to diet, she says it’s very much like what you’re told with IBD.

“I typically avoid anything with large seeds or nuts, and if I do eat them, I chew thoroughly, the same with fruits and vegetables that have skin. I still do not eat popcorn. Since getting an ostomy I have been able to eat a wider variety of foods than before, but I have heard mushrooms are dangerous and I miss eating them a lot. To thicken output I eat marshmallows, rice, potatoes, and bananas.”

Some foods are known to increase output and gas. Carbonation drinks, chewing gum, and even something as simple as using a straw, can increase your gas ingestion which will need to be expelled. The challenge is, what may increase one person’s output, may not for someone else or vice versa.

Oh, The Places You Will Go…With an Ostomy

Once it’s “safe” to travel post-pandemic (can you even imagine?!), there’s a lot to keep in mind when you’re packing your bags and you have a bag. The first rule of thumb—be overly prepared and always carry-on your supplies in case your suitcase gets lost. Ostomy supplies are needed to be temperature controlled; they are permitted to go through TSA as carry-on.

Be proactive and if you need to cut your wafer, try to cut some before you travel, and pack your favorite scissors in your checked baggage. The consensus among all ostomates I spoke with—pack extra of everything. You don’t know if you’ll have a defective appliance or have any issues arise while you’re away from home.

Natasha Weinstein always considers how long she is traveling and how she is getting to her destination. She says, “I always pack for up to 3 changes a day. If I am flying, I pack a bit more, as air travel seems to affect my adhesive. I seem to do better with car travel. If I am being exposed to extreme temperatures or my itinerary is more active, I take that into account. I do everything I can to alleviate any possible stress about supplies, so I can enjoy my vacation.”

Double and triple check to ensure you have all your supplies and bag changes packed before you head out the door. An ostomy isn’t like a regular prescription; it can be impossible to find when you’re in another city and you’re simply out of luck at that point. Many of the ostomates I talked with recommend organizing your supplies in a travel toiletries holder.

For additional travel—both domestic and international—with an ostomy, check out this helpful article by ostomate, Tina Aswani Omprakash.

Ch-Ch-Ch-Changesss…the ins and outs of changing your ostomy bag

How long a bag will last varies depending on a few different factors: activity level, weather, bathing, sleeping, etc.There isn’t a one size fits all for bags, it takes a while to figure out which appliance and ‘accessories’ work best for you, that can also change over time, even after you think you have found the right one. Skin allergies are common. It’s best to get free samples from several different companies and try them out. Deodorizing & lubricating drops are also helpful.

For any new ostomates, if insurance/payment allows, it’s recommended to have an ostomy home care nurse help you through any trouble shooting with changing your bag at home.

“I don’t know what I would have done without my ostomy nurse, she was an absolute angel. She would come weekly and was able to talk me through problems I was having and give me several new tips. If that’s not available, several people on social media have videos posted. Organizing your supplies is important too so you know your inventory levels and don’t run out. I have a small stocked caddy in my bathroom ready in case I need to do a middle of the night bag change,” says Byrd.

Byrd typically changes her bag every four days, but has gone longer on occasion. Morning bag changes seem to work best for her (before she eats anything) otherwise she says you can wind up with a mess.

Lindsay Dickerson, age 30, of Georgia, was diagnosed with colonic inertia, gastroparesis (digestive tract paralysis) at the age of 17. When it comes to changing her ostomy, she says it’s key to lay out all your supplies prior to making your first move.

“Know you have everything there, so you don’t have to run to your supply closet and risk a spill. I use a grocery bag and tuck it into my waistband to collect any output and trash.  When I used the Hollister brand, I had a thousand supplies that went into a bag change. Now that I’ve switched to the Sensura Mio Convex 2-click appliance, I need the wafer, a bag, and skin-tac that helps the bag stay on longer. My Hollister (which I used for 3 ½ years) lasted two days; my Coloplast Sensura Mio lasts at least 5 days.”

Lindsay recommends always having a water bottle with you when you empty. Since output can be sludgy and hard to empty, it enables you to rinse your bag with some water after you’ve dumped it. She says this tip will change your life!

Michel Johnson, 56, of Tennessee, had a temporary ostomy for nine months. He recalls changing his bag every three to four days. At first, he said he would relive the trauma every time he had to change or empty it, but then his perspective shifted.

“I realized my ostomy saved my life. Rather than moping around, I brought a music speaker in the bathroom and created a dance playlist for my bag changes. I looked forward to it! I danced and sang while I changed my bag. Doing this completely reframed how I looked at this process.”

Several ostomates also mentioned showering bag free and what a wonderful feeling it is to not have anything attached to your body. Just remember to keep soaps and shampoos with perfume and moisturizers away from your stoma and peristomal skin, as they can cause irritation.

Jordan Ditty, 27, of California, was diagnosed with Crohn’s at age 11. When it comes to changing her bag in public, she recommends hitting up Starbucks, as they usually have single bathrooms. If you need to change your bag in public, she says it’s also helpful to use the stall with the changing table so you can lay out all your supplies. Jordan always keeps disinfectant wipes in her bag along with extra paper towels to make sure she’s able to clean the surface area and stoma well.

“You can also sample different companies supplies for free. Email them with what you are wanting to try, and they will send you 2-3 of them as well as others so you are able to find what works best for you. In the past year and a half, I have changed my pouching system at least five times if not more to find what works for my skin, activity level, daily life, and stoma.”

Overall, the recommendation—expect the unexpected. You can’t control what the stoma does, so when it’s not cooperating, try your best to go with the flow (literally and figuratively!). And don’t wait too long to change a bag. If your skin is burning underneath, it’s probably leaking, change it. If you think the adhesive is coming off your wafer and may not last sleeping through the night, change it. Overestimate the time you will need and please give yourself grace upon grace.

Stay tuned for Part 3 of “So, You Have An Ostomy…” Monday (September 28th) we’ll cover disclosing you have an ostomy on a date, intimacy, styles of clothing and underwear that work best and the unique names some IBD warriors have for their stomas.

In case you missed it, click here to read Part 1 of “So, You Have an Ostomy”—The Complexity of Coping, which focuses on what it’s like to find out you need an ostomy, the complexity of coping, and adjusting to your new normal.

A close-knit family: The story behind this Crohn’s blanket

There’s nothing quite like a grandmother’s love. They have a way of bringing comfort, peace, support, faith, and love to family, among many other incredible traits. IMG-2601When seven-year-old Penny was diagnosed with Crohn’s in January 2017, her grandmother, Mary, started knitting her a purple blanket. She chose the color purple because it’s not only Penny’s favorite color, but also the color that represents Inflammatory Bowel Disease (IBD).

“Penny has always had a special little gauze blanket, but I wanted to make something for her that would hopefully comfort her on days when she does not feel well,” said Mary Otto. “It’s the same idea as prayer shawl people make for those who are ill. As I knit, I pray for Penny.”

Other times, Mary says she prays for her family, for others battling Crohn’s, for those with other illnesses and diseases, and for people in general. As of now, the blanket is 44” wide and 42” long. Mary jokes she isn’t a consistent knitter and that she has a long way to go before the blanket is “adult size”. Penny currently stands 3’9”. IMG-2600

The passion project has been a special hobby between Penny and Mary. It’s Mary’s hope that in the future Penny will look back fondly on the memories and that each time she is snuggled up under the blanket she feels not only its warmth, but the warmth of her love now and always.

“I hope when Penny isn’t feeling well or in the hospital that she will find physical comfort in it (due to its weight), but also emotional and spiritual comfort because of the love and prayers that were part of its creation,” said Mary.

Every time Penny sees the blanket, her face lights up and she asks when it will be done. It’s a labor of love for Mary, every stitch made with purpose. As a grandparent, she says it’s heartbreaking to see a grandchild take on a disease like Crohn’s.

“No one wants to see their loved one suffer. I don’t like the helpless feeling when there is nothing I can do to make the situation better. I worry about Penny. I’m also concerned about her parents and brothers, because an illness like this affects the whole family.”

IMG-2918At the same time, Mary says she’s impressed by Penny and how she is taking all the baggage that comes with Crohn’s in stride at such a young age: the daily medications, the infusions, the lifestyle changes.

“Penny demonstrates so much strength, she is my little hero!” A hero who will one day hold on tightly to that blanket and not only feel the love it exudes but be reminded that she’s never alone in her struggle.

While Penny was dealt a difficult hand of cards when it comes to her health, there’s no denying she hit the jackpot when it comes to her family.

Accountability & Chronic Illness: How Pack Health is leading the charge to empower patients

This article is sponsored by WEGO Health, opinions and thoughts are my own.

Accountability can be a tough pill to swallow when you battle chronic illness. Often times it feels as though the only person who can improve our overall wellbeing, is the person you see looking back in the mirror. But, Pack Health and CME Outfitters is looking to offer support to patients like you and me every step of the way to make our journeys less lonesome and isolating. Pack Health in partnership with CME Outfitters does this by providing one-on-one support, over the phone and online, to help people regain control over their health. photo (17)

Right now, Pack Health’s work spans across more than 20 chronic conditions, including inflammatory bowel disease. Not everyone has a support network. Not everyone has a spouse or a significant other they can lean on. Not everyone feels like they can take on the beast that is chronic illness alone. Get this—the average patient is only with their doctor 1 of the 6,000 hours that they’re awake each year! Pack Health works to fill in those gaps.

Here’s how it works—the service is more than just a health coach. By teaming up with an IBD coach, you can have someone texting you when you need a reminder, helping your find ways to make healthy living easier and more enjoyable, and someone who has your best interest at heart, every step of the way.

Finding Your Motivation
You’ll map out your goals for the months ahead. Where do you want to be in 3 months? 6 months? One year? Your personal IBD Health Coach will bring this goal into focus so it’s attainable and less overwhelming.

Setting Weekly Goals
Natalie runningIt’s not always the big goals, it’s getting through the day-to-day. Your IBD Health Coach will help you stick to weekly goals through calls, texts, and emails, based on how you like to communicate. Support will be right at your fingertips.

A Network of Resources
Rather than wasting hours on the internet trying to find dietary information or drug discount cards, the IBD coach will get you what you need to succeed.

By working with an IBD Health Coach patients are more likely to take their medications, stay on top of recognizing symptoms and improving their overall health and well-being. nataliepackhealth2As a chronic illness patient, myself, even though I try and manage my Crohn’s the same each day, sometimes life and being a mom gets in the way. I tend to put my needs and my care at the bottom of the totem pole. As a parent, I know I’m not alone in that. Having a Health Coach standing by ready to listen, educate and inspire me, is a reminder that I’m not in this alone.

Click here to learn more and try it for yourself.

Healthline unveils new IBD app: What you need to know

This article is sponsored by Healthline. Thoughts and opinions are my own.

I met my husband thanks to a dating site nearly six years ago. I never dreamed I would one day be able to connect with fellow IBD warriors through an app, but hey thanks to Healthline, it’s now possible! IBD_Facebook_Ads-1200x628_Real-Life_5Over the next month, I’ll be partnering with IBD Healthline. I am so excited to share my journey using the app and explain how you too can benefit from all its invaluable features.

When I was diagnosed with Crohn’s disease at age 21 in 2005, I felt incredibly isolated, alone and scared. Like anyone with chronic illness, it can be difficult to not only articulate theses stresses but find people who genuinely care and empathize. The IBD Healthline app addresses this by providing a safe space to conversate with those who live your reality. By communicating with others in the IBD community, it empowers us and is a reminder that there’s a huge network of support right at our fingertips, 24 hours a day.

My favorite functions of the app

One of my favorite parts of Healthline’s IBD app is how it connects you with one new member each day, based on your disease, age, and lifestyle interests. You can check out fellow member profiles and request to connect, too! IBD_Facebook_Ads-1200x628_Real-Life_2I don’t know about you, but the more people I know with IBD, the stronger it makes me feel as I take on the disease.

Healthline’s IBD app is a great gathering place for our community to share experiences, learn from one another and offer support. Many of us tend to sugarcoat our day-to-day experiences, here you can be honest and trust that you won’t be judged for your struggles or setbacks. It’s intuitive and easy to use, whether you’re a patient or a caregiver.

Along with the personal connections, there are medically approved wellness articles IMG_0811and podcasts shared each week on everything from diagnosis to nutrition and self-care tips. The more educated we are about our illness, the better advocates we can be for our care.

Check out the Live Chats

Another great aspect of the app is the “Live Chat” function. Each Healthline Ambassador will be hosting chats in the coming weeks. Save the date—I’ll be hosting a live chat Monday, June 3 about dating, relationships and marriage with IBD. I’m thrilled to have the opportunity to share my personal insight on this subject matter with you and lead the discussion. It’s my hope my words and patient journey will comfort you and give you hope as you navigate life with IBD.

This free app is brand new and was just launched this month. You can download it onto Apple and Android devices by searching for “IBD Healthline”. As patients we are up against so many unknowns, this app is a great constant to have as you deal with the feel-good days and the not so good days. I look forward to connecting with you all!

You can access the free IBD Healthline app here: https://go.onelink.me/LOC7/6dae5800.

Taking on IBD one step at a time: Getting empowered through Team Challenge

One of the many benefits of getting involved with the Crohn’s and Colitis Foundation is finding people locally who understand and live your reality. I became friends with a woman named Angie last year. facebook_1529431731870She’s a resilient person with a positive attitude. Her energy is contagious. This week, a guest post about her involvement with Team Challenge and how it’s enabled her to find community not just in St. Louis, but throughout the United States. I’ll allow Angie to take it away…

My journey began with inflammatory bowel disease began in April 2011. For me, symptoms went from non-existent to emergency surgery within a month of first waking up with cramps and diarrhea. I had been a healthy active person up to that point and I was a month shy of my 46th birthday.

I was first diagnosed with ulcerative colitis, but that diagnosis was later changed to Crohn’s disease. Due to reoccurring abscesses, my GI doctor ordered some additional tests that showed I have Crohn’s. When I was first diagnosed with IBD, I had never heard of Crohn’s disease. There was so much to learn and absorb, but I was so sick, it was hard to take it all in. My emergency surgery resulted in a total colectomy. I had a perforated bowel in 4 places. Once the surgeon opened me up, he discovered things were much worse than he expected and I had sepsis. Those early days in the hospital were hard, but I was committed to staying positive and hopeful.

One of my favorite ways to stay active had always been power walking. If I could walk somewhere vs getting in my car and driving there, that was my path of least resistance. So, getting to a point where I felt well enough to get back to exercising was a goal of mine. Ironically when I first asked my doctor when he thought I’d be well enough to power walk again, he recommend I not walk too far because he knew I’d probably need to use the restroom. In those first couple years living with Crohn’s, I was taking 20+ pills a day and probably using the restroom 30+ times a day. I was fragile and got short winded quickly, even walking to the corner in my neighborhood was a challenge.  I stayed hopeful that brighter days were ahead. I was very fortunate to have a very supportive group of friends and family around me.

Fast forward to the fall of 2015. I was feeling much stronger since being on Humira for about a year. facebook_1529431766690I saw a post on Facebook about Team Challenge and an upcoming Rock and Roll Marathon and Half Marathon that was taking place in February 2016 in New Orleans. I didn’t hesitate to sign up and commit to doing a Half Marathon and fundraising to find a cure for Crohn’s & Colitis. Almost immediately, one of my childhood girlfriends decided she was going to do the Half with me and she too joined Team Challenge. I’m not sure we knew what we were getting into, but we were 100 percent committed. Two ladies, soon to be 50, and neither had even done a 10K, let alone a Half Marathon! In full disclosure, we always knew we were going to walk, not run the Half. We might be crazy, but as they say, we were only “Half Crazy”!

Team Challenge has been one of the best decisions of my life. It has been a truly life changing experience. I am about to start training for my third Team Challenge race taking place in November in Savannah, GA. Team Challenge is a few hundred people who share one common goal, which is to find a cure for IBD. Once you sign up, you commit to a fundraising goal, but Team Challenge provides the coaching and training to not only complete the race, but to reach your goal and have fun along the way.

Race weekend is amazing! There are opportunities throughout the weekend to meet with your individual team, as well as the entire Team Challenge family. The night before the race there is an inspirational pasta dinner.

The evening is filled with tears of joy and we celebrate our combined mission of finding a cure. Some are parents running or walking for a child, some are friends and family running in memory of a loved one lost, and some are like me – a Crohn’s patient determined to not let Crohn’s hijack her life!

My advice to anyone looking to feel empowered against IBD would be to get involved with Team Challenge. I have made so many new friends and I’ve gained so much confidence through my involvement. I guarantee you’ll leave race weekend with a feeling of accomplishment and you’ll feel the love from the Team Challenge tribe that is now an extended family and support system of your own.

Click here to learn more about how you can get involved with Team Challenge.