“So, You Have An Ostomy: A Look Into Your Future and How to Support a Loved One—Part 4

For anyone with chronic illness, it’s safe to say living with a disease gives you perspective. Your patient experience and journey shapes you in ways you may never have imagined, until you’ve lived it—persevered—and can look back at all you’ve overcome to get to where you are today. In Part 4 (the final installment) of “So, You Have An Ostomy,” we dig deep into what ostomates wish they knew that they know now, how best family members and friends can offer support, and why some choose to show their ostomy and others do not.

Before we get started, here are links to:

Part 1: Coping with the Complexity

Part 2: Tips for Travel, Diet, and Bag Changes

Part 3: Recommendations for dating, intimacy, naming your stoma

What Ostomates Would Tell Themselves If They Could Go Back in Time

Brian Greenberg wants anyone who is contemplating getting an ostomy to know that life doesn’t end after surgery, it begins again. He says after being sick and thinking an ostomy would be worse, it gave him his life back. He went from being in bed and alone to being an Ironman and marrying the love of his life.

“There are a lot of ostomates out there and none of us are recreating the wheel. If you have a fear or question, chances are there is someone who already has created a solution. I went from being bedridden to completing a full 140.6-mile Ironman, which showed me anything is possible. My ostomy has allowed me to not only live a normal life, but a good life.”

Ashley Clark says she used to be scared to leave the house. Her ostomy has given her freedom that she never had before.

“Prior to my ostomy, I didn’t want to make new friends or spend time with people I wasn’t comfortable around, I had no energy and I felt like I was trapped inside this body that couldn’t do all the things my brain wanted to do. Since my ostomy, I feel like I’ve gotten myself back in a lot of ways. I make plans again and I travel and spend time with people I love. I don’t take life for granted.”

When Michel Johnson thinks about when he had an ostomy, he says it not only saved his life, but taught him to reframe the tough times. He believes he became a better person in many ways and that his level of gratitude and compassion for others grew exponentially. He’ll always remember when he had his first bag leak in public the first time he left the house after surgery.

“I was in at a grocery store and struggling to change my bag in the restroom. I got poop on my shirt. I was embarrassed. A lady noticed the supplies in my hand and the mess on my shirt when I went into the restroom. She told me she was a nurse. She had a store employee block the bathroom door and she came in to help me, even gave me her blouse to wear (she had a tank top on under her blouse). I cried and hugged her so tight. Couldn’t believe she was so sweet to me in my time of need. It’s moments like that, which change a person.”

Alison Rothbaum credits her ostomy for allowing her to be alive. She says she wouldn’t have made it beyond age 23 if she didn’t have her colectomy. Since surgery, she’s been able to travel, work, and actively participate in the lives of her nieces and nephews. She advises ostomates to cut themselves some slack and acknowledge how far you’ve come every step of the way.

“You’re learning a new lifestyle of personal care externally and recovering internally. There’ll be days you are so upset, and then there’s days you only remember you have an ostomy when you go to the bathroom. This new life may have not been what you had in mind years ago, it may not be ideal, but it’ll be ok.”

Gaylyn Henderson created Gutless and Glamorous, a non-profit organization, as a way to empower and uplift those living with chronic illness and to raise awareness and erase the misconceptions of living with an ostomy. She doesn’t want others to suffer because of the fear of being stigmatized; it’s her goal to eradicate the stigma.

“Through it all I have learned to remain constant in my beliefs and that is to not let the beliefs of others control how I view myself. I’ve learned the importance of loving myself and staying true to myself and knowing I am capable of overcoming anything. I’ve learned that one of life’s most rewarding challenges is to accept yourself for who you are and all that you are completely and consistently. I am so in love with my new body; my new body saved my life in more ways than one.”

Loved One or Friend an Ostomate? Here’s how you can offer support

Listen. Listen. And listen some more. And be there. You don’t have to know what to say, you don’t need to have the right words or give advice. Let your loved one or friend know they are not alone and don’t pretend to understand what your loved one is going through, because you simply can’t relate (unless you’re an ostomate yourself)! Ostomates say when they complain or having a hard day, they just want to be heard and believed.

Karin Thum says to find your tribe and love them hard, “It may be a friend, or maybe a family member. Someone who doesn’t have Crohn’s or ulcerative colitis may not fully understand. But the right support won’t try to understand. They’ll just want to be there for you.  Let them. It’s hard for those closest to us who love us to watch us go through what we do.

IBD mom and ostomate, Byrd Vihlen, recommends loved ones to ask questions and take the time to learn more about ostomies, the disease, and what this means going forward.

“This surgery is NOT A CURE. Knowing that you care enough to want to be educated means the world. I would also advise that going into surgery, the recovery could be very different than what is described by the doctors, prepare for that emotionally so you can better support your family/friend…and not put any extra unnecessary stress on them during a fragile time. Empathy goes a long way.”

Speaking of empathy, Tina Aswani Omprakash recalls how one of her friends once insisted on watching her change her ostomy bag. As first, Tina says she was freaking out saying no. But now, when she looks back, she realizes that was one of the most supportive experiences.

“She asked questions as I went along and was curious to understand how it worked and why people felt such a stigma around it. It made me feel like a human being and that someone actually cared and wanted to learn and support me. I’d say if you’re close family, be there when the ostomy nurse is teaching how to change the bag. Oftentimes, we are in such a rut and on painkillers that we have no idea what’s going on. Support us, ask questions, be there and take notes. It can only help.”

Kristina Schook, 24, of New York, was diagnosed with Crohn’s when she was eight. She needed an ostomy when she was in high school and says the entire experience was insanely hard on her. Her bag would constantly leak, and it messed with her self-confidence. She says she had to alter what sports she played because of the leakage, but is thankful she was never judged by her peers. When it comes to advice for family and friends, Kristina says, “Just let us rant if we are upset. Don’t tell us you understand because our intestine is literally out of our body. It’s extremely hard to deal with mentally. For me, reversal was a great option and I don’t regret it.”

Jordan Ditty says patience is key.

“This is a big change. There will be a lot of emotions around it whether it was planned and wanted, unexpected, or they were dreading it. Offer to sit with them while they change their bag, watch a movie together, bring them coffee, listen to their frustrations, hold them when they cry, they need your support. While at the same time don’t treat them any different, this ostomy did not change who they are as an individual.”

Lindsay Dickerson says if you care about someone with a digestive disability and ostomy, recognize the mental toll their patient experience can cause.

“We are shuffled from specialist to specialist, appointment to appointment. There are days we can’t function and (personally) I feel worthless as a friend, wife, mother, and person. Educate yourself on your loved one’s condition. Support them when they feel down. Help them understand it’s not their fault, even though we will feel like it is at times. On the days they need that extra help – give it to them. There are days we can’t do it all and need this help, it’s a lifetime condition. Empathy and love are what we need and the more you give of it the better.”

Showing Your Ostomy Bag to Others

Whether or not you choose to show your ostomy bag publicly is a very personal decision. Some people feel empowered by it, others prefer to be more discreet. You do you, boo boo.

Natasha Weinstein says sharing her ostomy with the world is so much fun. When she first got her ostomy, she would put duct tape all over the bag, thinking it would make it more “socially acceptable” for people to see. Then, she realized a few things.

“Number one—duct tape is uncomfortable. Number two—I was going through a lot of bags and duct just to go swimming, which made the bags heavy! Number three—the bags are already skin colored so what was I doing?! Once I got rid of the duct tape, everything got easier and all I had to do was choose my bathing suit of the day. Now it’s become routine to take a post-race photo with Ziggy out wearing my medal because we’re accomplishing and conquering life together.”

Tionna Forchion says being transparent about her life with an ostomy has been extremely fulfilling.

“I hid my bag from family and friends for many years and now I openly post pictures on social media showing my ostomy and it feels so empowering to show the love I have for myself in my entirety, and that includes my ostomy bag. It’s rewarding when other warriors on social media write me messages saying that me posting pics showing my bag has helped them embrace and love themselves flaws and all. That’s really why I do it, to inspire others to love everything about themselves and so other ostomates know they are not alone.”

Sahara Fleetwood-Beresford shares her ostomy with world so that people can see that it’s ok not to be like everyone else. She doesn’t feel embarrassed or ashamed and doesn’t think of her bag as an issue. “It is what it is—it’s part of me. The same as my moles, scars, stretch marks, etc.”

Speaking of scars (or battle wounds as I like to call them), Lindsay says, “I love showing off my ostomy.  I’ve had 14 surgeries in my lifetime at this point and the ostomy is a symbol of everything I’ve overcome and how I’ve taken the steps to improve my life for the better. All bodies come in different shapes, sizes, and abilities. I feel confident with my ostomy out and welcome anyone who has questions about it!

Payge Duerre says showing her ostomy doesn’t phase her anymore. She says it doesn’t make her feel empowered, either.

“I post for others. I show for others. I show and post because I’m 110% okay if I get hate or negative comments. I might cry if there are mean people, but I truly post and show my ostomy because I’m confident about it and hope to support others by doing so. My ostomy has completely changed my life for the better. There is no possible way I’d be this healthy version of me with my colon. I no longer shit my pants, I can travel more than five minutes away from the bathroom, I’m not missing every other day of work/school/events because of pain so immense I can’t get off the couch. I don’t have to spend an entire day every four weeks getting my infusions.”

Tina and many others I interviewed, choose not to show their ostomy or their stoma. But each ostomate said they respect the many people who do.

“I don’t feel that I need to show it to talk about it or to empower others. Culturally speaking, I think for me, it’s better left to the imagination. I do show what a stoma bag looks like and show different activities you can do with an ostomy but I think this is an individual’s choice to show or not to show and still feel empowered.”

When Life Comes Full Circle

Over the course of the past few weeks, I’ve had the privilege of connecting with more than 20 ostomates around the world who have candidly and whole-heartedly shared about their personal experience. As someone with Crohn’s who does not have an ostomy, I consider your ostomy a symbol of strength and survival. What each ostomate endures prior to surgery, through recovery, and in life, takes patience and perseverance. It takes strength from within. A strength I can’t even begin to fathom. Ostomies are a visible reminder of the often invisible battles those with IBD and other digestive diseases face while having chronic illness. It’s normal to grieve and be devastated. From what I’ve learned through these warriors, the best way to view life with an ostomy is to think of all the positive it will bring to your life and how it will improve your health and condition. Shifting your perspective and thinking of your ostomy as a gift rather than a curse seems to be the best medicine of all. Thank you for following along through this series. I hope you feel better educated about life with an ostomy and have learned something, I know I did!

Celebrating Ostomy Awareness Day (October 3rd, 2020)

This year marks the 10th Anniversary of National Ostomy Day. This day serves as an opportunity to spread awareness about ostomy surgery.

Twitter Chat (#ddhchat): Diet and Digestive Health Chat about Nutrition for the Ileostomy hosted by ostomate Tina Aswani Omprakash and Neha D. Shah, MPH, RD, CNSC, CHES Friday October 2 at 12 p.m. EDT.

Check out this Facebook Live hosted by United Ostomy Associations of America, Inc. at 12 p.m. EDT, October 3.

Run for Resilience Ostomy 5k (Virtual)—Saturday, October 3

Gali Health will be sharing videos from ostomates—connect with them (@GaliHealth) on Instagram, Twitter, and Facebook.

Helpful Resources:

Crohn’s and Colitis Foundation

United Ostomy Associations of America, Inc.

Ostomy Support Group Finder

The J-Pouch Group

WOCN: Wound, Ostomy, Continence Nurse Society

“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.