When Campbell Dwyer was three years old, her health took a turn for the worse. She was diagnosed with Hirschsprung disease, a rare congenital disease that affects the colon and intestinal motility. She underwent three surgeries by the time she was four.
Her life began with two colostomies before she transitioned to a permanent ileostomy in her thirties. After her 10th surgery, she joined several online support groups geared for those with ostomies. To her surprise, she discovered there were many children who had ostomies.
After doing research, Campbell was shocked about the lack of literary support for children coping and coming to terms with ostomy life. She decided to change that by creating a book series called “My Silly Illy”.
“I want children to understand having an ostomy does not define them. It is simply a piece of them that contributes to their individuality. My hope is that this book will help teach inclusion and acceptance.”
Her thought-provoking, heartwarming, and humorous story aims to help children understand what is happening with their bodies and how to thrive with their new appendage.
The only constant in life is change
Throughout her lifetime of coping with Hirschsprung disease, overcoming numerous surgeries, and transitioning from a state of merely existing to living. Campbell says she welcomed each high and low as part of her transformation.
“Making the decision to write this book series has been my greatest personal success yet. I have confidence that my personal battles with an invisible disease and life with an ostomy will encourage and motivate those younger than me and promote strength to their families. I can finally see that nearly forty years ago, my future was being purposefully designed to make a difference in the world.”
Bringing My Silly Illy to life
Talented illustrator, Ana-Maria Cosma, took Campbell’s vision, thoughts, and scribbles, and brought them to life with the hope of creating a life-changing and eye-opening literary experience for many.
“My vision for this book is that the ostomy will be portrayed to each child as their personal superhero. The last page of the book has a faceless child, this is by design. The child can draw their face, or the loved one can cut out a picture and place it on the spot. There are also fun hairstyles that can be cut out. I want children to see themselves in each page of this book; to see themselves enjoying their favorite foods, traveling, and playing.”
Gearing up for a hospital tours
In the months ahead, Campbell plans to visit children’s hospitals around the United States, as well as bookstores. She’ll be hosting book readings, signings, and round table discussions with families and children coming to terms with ostomy life. Her goal is to champion pediatric ostomy patients and help their loved ones and parents understand what the child may not be able to communicate.
You can order “My Silly Illy” in the following places:
For many of us, when we’re initially diagnosed with IBD or when we flare, we experience weight fluctuations. The number on the scale may plummet during times when eating anything hurts or seems to make symptoms worse. The number on the scale may skyrocket when we’re on prednisone and not only retaining fluid, but also wanting to eat everything in sight.
Andrew Jagim, PhD, CSCS*D, CISSN was diagnosed with ulcerative colitis in 2014 after being infected with an intestinal parasite (Giardia). He managed to remain in remission for a few years until things went downhill quickly at the end of 2016. He dropped 50 pounds over the course of 3-4 months, was going to the bathroom 15-plus times a day, was running constant fevers, severely fatigued, anemic, and had little appetite. In the spring of 2017, after two weeks on TPN and several days in the hospital, he decided that a sub-total colectomy was his best option at the time. Since then, Andrew’s battle has been a rollercoaster of ups and downs, resulting in 12 colorectal surgeries.
Sports and fitness have always been a huge part of Andrew’s life—so much so, that he made a career out of it. He has a doctorate in exercise physiology, is a certified strength & conditioning specialist and a certified sports nutritionist, so he has an extensive background when it comes to understanding the important roles of exercise and nutrition for health and performance.
“Throughout my life, a large part of my identity has always been tied to my physical appearance. I’ve always been known as someone who is athletic, big, and strong with a high state of fitness. I struggled immensely during my flares and surgery recoveries when I couldn’t work out, when I looked sick or couldn’t stop losing weight. It was like I was losing a sense of who I was and who I identified with. When I looked it the mirror, it pained me to see my hard-earned muscle just “falling off” when I was too sick or weak to workout. However, I have always been determined to rebuild my body and regain what I lost.”
This week on Lights, Camera, Crohn’s—a look at the impact disease flares and surgeries can have on body composition, and how you can try and counteract the changes through diet and exercise.
A cornerstone of the disease itself is a high state of inflammation – most of which is centralized to the gut; however, this can also have systemic effects thereby resulting in widespread joint pain, fatigue and even a state of anabolic resistance within muscle tissue. Essentially, this makes it challenging to maintain or increase muscle mass during a period of high disease activity. This can be coupled with a reduction in appetite which can exacerbate body weight loss and muscle loss.
Surgeries can range from minimally invasive procedures to treat a fistula to much larger and complex operations such as removal of sections of the bowel and placement of a stoma for an ostomy. Depending on the magnitude of the surgery, patients often must modify diet and physical activity based on the recommendations of the surgeon.
These modifications will likely lead to decrements in body weight, muscle, strength, and endurance in the short-term; especially individuals who may have been highly active prior to the surgery. However, in patients who may be extremely ill at the time of surgery, the procedure may help them regain lost weight and strength as their body may finally be able to heal and recover from the inflammatory cascade brought on by IBD.
The Case Study Andrew Conducted
A year and a half after Andrew’s colectomy, he decided to schedule the second step for the J-pouch procedure. However, prior to, he decided to take advantage of this unique opportunity and conduct a case study on himself to document the changes in body composition and performance throughout the recovery process. He was curious how a surgery like that would impact someone with his fitness state as most of the literature focused on smaller or more sedentary individuals. Leading up to surgery, he had been able to resume his regular fitness routine and got his weight close to where it had been for most of his adult life.
“As seen in the figure below from my published case study, there were significant declines in body weight (-10.5%), lean body mass (-9.9%) and endurance (-40.3%) 4-weeks post-surgery. At 16 weeks postoperatively, most parameters were near their baseline levels (within 1–7%), with the exception of my peak endurance, which was still 20.4% below baseline. Thankfully, I was able to leverage my educational background and expertise in exercise physiology and nutrition to use targeted exercise and nutritional strategies to retrain my body and build my physique back up,” explained Andrew.
The balancing act of trial and error
As many IBD patients know, there are a lot of nuances, misconceptions, and unknowns regarding how diet impacts disease. For Andrew, it has been a lot trial and error to find foods that worked for him and helped him achieve his goals.
“Early in the recovery stage, just getting my appetite back and trying to eat more while not interfering with any post-operative dietary recommendations was always my goal. For me, this meant trying to eat about 2,500 – 2,750 calories and 150-170 grams of protein per day. In my opinion, these are the two most important dietary goals when it comes to regaining any weight (especially muscle mass) following surgery or during a flare. It will also help support the tissue and incision recovery following surgery”
Regarding exercise, strength training, is the most effective form of exercise to regain lean body mass following surgery. However, most colorectal surgeons (for good reasons) impose a lifting restriction of no more than ~10-15 lbs. for about 6 weeks following surgery to allow the incisions to heal and avoid the risk of hernia.
“For my larger surgeries, this was easy to abide by as I was in so much pain and was so fatigued that it was a struggle to just get dressed and ready for the day, so there was no temptation to get back in the weight room any time soon. But for the smaller surgeries, as I got closer to the 6-week mark, I was anxious to get back to my old routine. I took a very conservative approach and used a lot of alternative training techniques (i.e. blood flow restriction training, isometrics, resistance bands, etc.) to elicit an adequate training stimulus while not having to lift heavy weights and to avoid injury,” said Andrew.
Andrew’s main piece of advice about life with IBD? “Be prepared for a rollercoaster of changes to both your body composition and physical abilities throughout battles with IBD – especially during a flare or following surgery. Unfortunately this also will likely take a toll on your mental health as well, or at least it certainly did for me. However, just know that you can always get it back in time and more often than not, come back even stronger. Be patient and give your body rest when needed but otherwise keep grinding.”
Everyone has their own battles they are fighting
“I think my experience with IBD has taught me that everyone has their own battles they are fighting – even if they don’t show it. Additionally, it is also a reminder that not all disabilities are visible as a lot of people are probably unaware that I live with a permanent ostomy. I have chosen to keep a lot of my health struggles private and I think a lot of people will be surprised when they hear what I’ve endured over the past five years as I have still managed to have a successful career and not miss much work – despite all the surgeries and time spent feeling very ill.”
Andrew’s IBD journey also shifted his research focus a bit and challenged him to apply my knowledge of how to increase performance, strength and muscle mass in athletes towards a more clinical application.
“A lot of the strategies that work well with athletes can be modified and used in clinical settings as several of the benefits (i.e. increased muscle, strength, endurance, energy, etc.) may also help improve quality of life in patients will a chronic illness, those who are critically ill, or those recovering from surgery. It’s just a matter of making the appropriate modifications and fitting them to the current need,” said Andrew.
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.
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.
Dating with IBD can be daunting. Add an ostomy to the mix and that stress is amplified ten-fold. In Part 3 of “So, You Have An Ostomy” hear from several ostomates about navigating relationships, intimacy, discovering what clothing and undergarments work best, and why some choose to name their stoma and others don’t.
Brian Greenburg, 37, of New York was diagnosed with Crohn’s at age 11. He has a permanent ostomy and “Ken Butt”. As a married man, he reflects on what it was like to be part of the dating scene.
“The best piece of advice I was given about dating is that my ostomy won’t keep me from meeting the “right one”, it will keep me from trying to be with the “wrong one”.
Read that again. It’s powerful and so, so true for anyone with a chronic illness. Brian advises it’s best to talk confidently about your ostomy and not to shy away from communicating with your partner.
London Harrah, 29, of California, was diagnosed with ulcerative colitis two years ago. From the get-go, his gastroenterologist told him there was a possibility he was going to need an ostomy. At first, London was completely against the idea. His disease didn’t give him any other choice and he ended up with an ileostomy.
“I was having 20 bowel movements a day and throwing up at least one time a day and I was losing a lot of blood. I mentally and physically got to the point where I could not take it anymore and after countless visits to the doctor and attempts at different medicines, I told them that I wanted to proceed with the surgery. I had basically given up on any and all expectations on what I wanted my life to be and had accepted that I just needed to feel better.”
London recalls making his first post about his ileostomy on social media and expecting that no women would be interested in him because of it. He was single when he had the surgery and had accepted he was going to be alone the rest of his life.
“Over time I gained more and more confidence and ended up testing the waters with talking to women. I soon was able to figure out that, if anything, having this surgery just assisted me in weeding out the bad apples. There are a lot of people out there who see beyond the surface of someone and will accept you for the person you are.”
London is currently in a new relationship and just got past the peak of explaining everything about his ileostomy in detail with his girlfriend. He says he feels a lot better knowing she accepts him completely.
Jordan Ditty says she was worried going into surgery not how it would impact her marriage, but moreso that her ostomy not only affects her life, but her husband’s as well.
“Going through surgery, seeing my stoma, sharing the frustrations and wins, naming my stoma together…it all brought us closer. If you ask my husband, he will tell you it did not impact him at all, he was happy that I was no longer in pain and we were able to live.”
As far as intimacy goes, Jordan says she was nervous, but that her ostomy did not affect a single thing.
“I personally always empty right before we do anything then just fold it up, so it is not flapping around between us. There are also many options out today for ostomies, crotchless lingerie that keeps your bag in place if you don’t want your partner seeing it, high waisted options, belts, etc. Find what makes you comfortable, just remember you are still you, beautiful as ever because you are finally healthy!”
Andrew Battifarano is a 26-year-old in New York, as far at the dating scene in the Big Apple, he says he’s usually open about his ostomy and finds it’s beneficial for both sides. Andrew says most people are super accepting and appreciate his honesty.
“There are those who are grossed out and don’t want to deal with someone who has an ostomy. It’s good to know who wants to be in your life and will accept you no matter what early in the process rather than later. I think everyone has their own methods, but I stand by being forthright early on so you can tell a potential partner what it is and hopefully educate them a little bit.”
Payge Duerre met her boyfriend after she had an ostomy. She says he saw her bag in a photo on her Tinder profile and stalked her ostomy Instagram before they met in person.
“He had actually said that my ostomy was a small part of what drew him to me, he could only imagine how I was living, and he wanted to take care of me like no one else did. It did not impact being intimate at all. We both think scars are more beautiful than untouched skin. And it has helped my intimacy. Not having that pain and sickness wearing me down all the time, or not worrying about using the bathroom in the middle of being sexy has helped me.”
Richard Harris, 39, of the United Kingdom was diagnosed with ulcerative colitis when he was 23. He says his girlfriend at the time of diagnosis and his first surgery is now his wife and the mother of their two boys.
“We’ve really been through it all together. She visited me in hospital when I was sick and had lost more than 3 stone (40-plus pounds!), so I think she saw it as a life or death thing too. Post-surgical recovery, intimacy took a while, but we got there in the end. The Coloplast Senusra Mio has a handy fold up feature with some Velcro to tuck the bag away which I tend to do.”
Tim Albert’s girlfriend has been by his side through it all, too.
“Initially I was concerned she wouldn’t want to deal with the struggles an ostomy brings, but she has proven time and time again that she has my back with this. For me, it wasn’t easy to be intimate, simply because I didn’t have the core strength. I physically couldn’t perform like my old self, and that was a tough pill to swallow. With time, I got stronger and that aspect of our relationship became fun again.”
Lindsay Dickerson says her ostomy did not impact her husband at all.
“He assured me multiple times that I am just as attractive, and it does not take away his sexual drive for me (just being blunt). However, as confident as I was with showing my bag off for others everywhere else, the bedroom was a different story. Finding lingerie that is “accessible” to your significant other but covers up the bag has helped me with confidence. Switching brands helped also – Hollister was super loud, and you always heard it during sexy time. The Coloplast Mio makes no noise.”
Byrd Vihlen says her husband is very information oriented and learned the ostomy terms before she did from reading an informational packet provided by the hospital.
“He helped me empty my bag, with no hesitation, for several days after surgery when I was unable do it. It was truly a sign of unconditional love. If your significant other cannot accept that you need an ostomy bag, their love is conditional.”
To name a stoma or not to name a stoma
Of all the ostomates I spoke with—it was a mixed bag (no pun intended!) when it came to those who choose or chose to name their stoma and those who do not. Each person’s reasoning and explanation made a lot of sense.
Tina Aswani Omprakash said her husband named her stoma “Snuffleupagus” in the hospital after surgery since it resembled the snout of the Sesame Street character. She also calls him “Bebu” which is a loving term that means “baby” in Hindi.
Sahara Fleetwood-Beresford’s experience is unique in that she has gone back and forth through her journey.
“I did not name my first one. I named my second one because I read it could help with acceptance of it. It DID make it easier to talk about to people. I do still consider my current stoma to have the same name, but I don’t often refer to it by name anymore. I usually just say “my stoma” because I felt like referring to it by name almost made me think of it like a sperate entity, when it’s not. Porta didn’t shit in the shower – I shit in the shower! Porta is not farting – I am farting. You get the idea.”
Jordan Ditty and her husband named her stoma “Norman”.
“We call him Norman when he is being difficult and Norm when he is being good. I thought it was silly at first to name him, but after a few weeks of being home with it, we came up with a name. It normalized it, made it easy to throw into a conversation, my friends and family all refer to my stoma as Norman.”
For those who haven’t chosen to name their stoma, the consensus was that it’s “just a part of them and not separate.”
Ostomy Secrets Underwear for Men—supportive and comfortable
Ostomy Secrets Wraps for Women—helps keep everything secure
High waisted tights, leggings, skirts, dresses, and jeans
American Eagle jeans
KanCan pants—with their stretch to allow the bag to grow
Vanilla Blush Hernia Support Vest for strength exercises
LuLu Commission Pants (for Men)
Aerie leggings and underwear for security and flexibility with an ostomy
Natasha Weinstein recommends discussing ostomy accessories with your care team.
“Would you do better with an ostomy belt? Are you active? Do you like to run, hike, bike, swim? You can still do these things! I am a runner and started running because of the Crohn’s and Colitis Foundation’s Team Challenge program and continued running despite my Crohn’s. Having an ostomy has made it easier for me to run since I am less worried about when I’ll need a bathroom next. Like more extreme sports? On my 27th birthday Ziggy stoma (yes I named mine and I recommend you do too – it helps with acceptance and I have all my friends referring to him as Ziggy), well Ziggy and I jumped out of an airplane! IT WAS A BLAST! What I promise is you can truly do anything you set your mind to, and your new ostomy will be along for the ride.”
Stay tuned Wednesday (September 30) for the final piece in the Lights, Camera, Crohn’s “So, You Have An Ostomy” series. A look at the perspective gained, advice for caretakers and family members, and incredible stories of ostomate perseverance that are sure to inspire.
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.
When you think of ostomy, what comes to mind? As someone whose had Crohn’s for more than 15 years, but never been an ostomate, it’s something that has loomed over my head since diagnosis. I’ve always wondered if I would ultimately end up with a bag and what that would mean for my life. I know I’m not alone in those worries and curiosities. Which is why I’m kicking off a 4-part series on Lights, Camera, Crohn’s— “So, You Have An Ostomy.” Over the course of these articles you will hear from more than 20 ostomates from around the world.
Today—we’ll focus on what it’s like to find out you need an ostomy, the complexity of coping, and adjusting to your new normal.
What it’s like to wake up from ostomy surgery
Blake Halpern, 39, of Texas, was diagnosed with ulcerative colitis in November 2004. By April 2005 he had a temporary ileostomy. After four weeks of being hospitalized on full bowel rest, it was determined he would need his colon removed. Blake says he was so worn out and emotionally drained, he felt like a shell of his former self. He was anxious to have the surgery and get his life back on track.
“The ostomy is so shocking. It seems like something out of a Sci-Fi movie. My small intestine poking through my abdomen emptying my waste into a bag?? That’s crazy. But it gave me some semblance of my life back. I was able to get out of the hospital, slowly start eating again and reclaiming my life.”
Alison Rothbaum, 41, of Ohio, was diagnosed with Crohn’s disease in 1994 at age 15. She says prior to her ostomy surgery, she went into a very dark mind space that she wasn’t prepared for.
“I woke without a pivotal organ. I woke with a new prosthetic device attached to me. I ached in my belly and in my heart. I needed to mourn the loss of the organ. It’s hard to describe unless you’ve experienced it. I refused to look at myself from the top to bottom in the bathroom mirror for a week. I didn’t want to see what the new body looked like, even though I had already begun to learn how to change my ostomy while lying in my bed.”
For Tina Aswani Omprakash, 36, of New York, needing an ostomy struck a major chord for not only her, but her family. She recalls how her dad hated his ostomy while he was alive and used to rip it off when he was in a coma in the hospital. Because of that, her mom had a significant amount of PTSD from his experiences and was against Tina receiving one. Her cultural society also told her that no one would marry her or accept her if she was an ostomate.
“I held off for as long as I could, but I started thinking that an ostomy wouldn’t be as bad as everyone was saying. I knew I needed to listen to my heart and to my doctors. My gut feeling (as flawed as my gut may be) was right. My ostomy had become my baby so to speak and I grieved for months if not years for the life it had given be back. Don’t let society sway your thinking. Seek counseling and ask all the questions you can to your surgeon and Wound, Ostomy, and Continence Nurse (WOCN) before the operation so you can feel a bit more at ease.”
Tina recommends connecting with fellow ostomate online over social media and through blogs. She says an ostomy doesn’t have to be a life sentence, but rather a life-saving force.
Adjusting to the new normal
Renee Welch, 34, of Toronto, Ontario was diagnosed with Crohn’s when she was nine years old. Getting an ostomy was a life or death decision for her. She knew the life she was currently living wasn’t what she was destined for and ultimately the choice was out of her hands.
“The hardest part of having an ostomy was recovery. It’s a long process that is not progressive. Mine took three months until I was able to feel like myself and even after that my energy was not the same until six months down the road. Recovery is something you can try to mentally prepare for, but you never know.”
Natasha Weinstein, 28, of Connecticut was diagnosed with Crohn’s at age 11. She can still remember feeling that tug on her skin and not knowing if the bag was going to randomly fall off. Eight years later, she’s still impressed with how strong the adhesive is! One of her main struggles was adjusting to her new self-image.
“No longer would I have a “flat” right side when I looked in the mirror, in fact I was always going to have this device protruding and as a college student and a young adult that’s a lot to adjust to.”
Payge Duerre, 21, of Iowa, was diagnosed with ulcerative colitis in 2003 at age 5. Her advice—not to think of your entire life as the first couple months after surgery.
“The first couple months can be shitty. More pain, more recovery, less muscle, new foods, new clothes. The entirety of ostomate life is not like that. My first three months post op were spent relearning life. But now I’m two years post op. I’ve already re-taught my body, but I’m always constantly learning new tips or tricks from other ostomates to make life easy.”
Advice for those who need an ostomy
Ashley Clark, 27, of British Columbia, was diagnosed with Crohn’s when she was 19. Her main piece of advice, “If you’re at a point where you are contemplating ostomy surgery, get it sooner rather than later. Waiting until getting my ostomy was a matter of life or death is one of my biggest regrets. It took me so much longer to recover because I let myself get so sick before I would agree to it. Looking back, I think, wow my life is so much better now, if only I had known it would be and agreed sooner.”
Tionna Forchion, 32, of New Jersey, was diagnosed with Crohn’s when she was 13 years old. She ended up getting an emergency colostomy after a bowel obstruction, so she wasn’t able to mentally prepare for the everything that came her way. Tionna says she was angry at first and cried for days, but as time passed so did her acceptance for how having a bag saved her life.
“My advice for anyone on the verge of getting a bag or needing one is that there is life after getting an ostomy. So many times, people say they don’t want a bag because they assume there will be so many things they can no longer do and that is so false. You can still travel, swim, go to college, have kids, get married and do everything a person without a bag can do.”
Gaylyn Henderson, 36, of Atlanta, Georgia, was diagnosed with Crohn’s at age 14 and has a permanent ileostomy. She says at times with chronic illness you can’t help but wonder if there is anyone out there who really understands what you’re going through, but that there is.
“You need to meet them, and you need to seek them out to know that what you are feeling is not unusual. The feelings you have are very real and it’s not out of the ordinary to be feeling that way. You are not crazy, your life is. There is an importance to building a fellowship of those that can relate to what you are going through. It is imperative to know you are not alone. You may not go through the exact same circumstances, you may not have the same diagnosis, but chances are you have similar experiences and can relate more than you realize. You need to know that what you are going through you will get through.”
Stay tuned for Part 2 of “So, You Have An Ostomy…”, Wednesday (September 23rd) we’ll cover diet recommendations, how to pack when you’re traveling, and how best to change your bag.