Parenthood when you live with a chronic illness like IBD can make you feel anxious, worried, and uneasy. As an IBD mom of three, I often connect with and share the stories of fellow women with Crohn’s disease or ulcerative colitis who have brought life into this world, despite their disease.
This week on Lights, Camera, Crohn’s we hear from a soon-to-be IBD Dad, Brad Watson-Davelaar. He was diagnosed with Crohn’s in 2001 at age 17. His name and face may look familiar, as I featured him in an article entitled: IBD Dads: What these patient heroes have to say about fatherhood. In that article, Brad was recently married and discussed his hopes for the future. Those hopes came to fruition, as he and his wife are awaiting the arrival of a baby girl in late June!
Leading up to the pregnancy, Brad was a bit scared of what fatherhood would look like while living with an unpredictable disease. Like many of us, Brad fears when his IBD will rear its ugly head again and cause him not to be as present as he wants to be, hindering his ability to be a “proper teammate” for his wife.
“Prior to my wife being pregnant, I think I was scared. I’ve wanted to be a dad for some time, but with the way my health has been over the last several years, the prospect of having kids while I was in that physical state freaked me out. Not because I didn’t want kids, but because I was worried I wasn’t going to be enough for them.”
Finding out he was going to be a dad
When Brad found out his wife was expecting he was elated. They had been trying for a few months and he was only a couple months post-op from his ileostomy and barbie butt surgery. While Brad knows life as an IBD Dad will have its ups and downs, he knows the highs will far outweigh any of the difficult days.
“I’m so thankful for Shawn, my stoma, for coming in and giving me a new lease on life. I feel ready to tackle this new chapter of our life and all that comes with it. The good, the bad, the ugly, and the beautiful.”
Since he’s lived with IBD for nearly 22 years and has been an ostomate for 6 months, Brad feels his patient journey has conditioned him to deal with the unexpected. He hopes to connect with fellow IBD dads who have paved the way before him and shown all that’s possible.
Discussing IBD with his daughter in the future
As his daughter grows up, Brad plans to be an open book about his battle with Crohn’s.
“I want to help her understand what IBD and ostomies are. Especially ostomies. It will take time, but I believe in being open and not hiding things. I want her to see that my IBD does not define me and show her how important it is to advocate for yourself.”
As Brad and his wife gear up to become a family of three, they are overjoyed and excited about the new chapter in their lives that is about to begin.
“I’ll be there to look after this wee little one, which will fill my heart with warmth. Being able to focus on her achievements will be a brilliant way to get through the rough days. In the past, it was the little things that got me through. Now, I’ll have all the little moments to continually push me.”
His wife, Sydney, feels so lucky to have Brad by her side as they experience this adventure.
“He had struggled so much over the last couple decades, especially these last couple of years and his perseverance and strength through it all makes me know that nothing is too big for him to overcome. I know he is going to be an amazing dad with so much love, nerdiness and laughter. His Crohn’s is a part of him, but his IBD does not define him. I know no matter what we can get through it together. Brad’s last surgery has definitely given him a new lease on life. With a baby on the way, his ostomy will help him be more present, active, playful, adventurous and helpful. I cannot wait to see him hold our little girl for the first time,” she said.
Fatherhood looks differently when you have a chronic illness. Finding a partner, family planning, decision making, and parenting are all impacted when you have IBD. This week on Lights, Camera, Crohn’s we hear from several men around the world. Whether they are preparing to start a family or have adult children, you’ll hear firsthand accounts about how their Crohn’s disease and ulcerative colitis has shaped who they are as men and as dads.
London Harrah, a 31-year-old dad in California, was diagnosed with ulcerative colitis in April 2016. He says IBD has impacted fatherhood in different ways and presented unique challenges. He’s grateful for the endless support his family has given him, making him feel comfortable to openly share about the struggles.
“Prior to my surgery and ostomy, my ulcerative colitis heavily impacted my parenting role. I had to shape my entire day around my ability to have close access to a restroom. Now after surgery, I have had a lot more freedom and a heightened quality of life. I am now able to partake in a lot more activities without my condition hindering me. I also feel like being an IBD dad makes me stronger because I look at parenting as an opportunity to set an example for my son on how to deal with adversity,” said London.
He says IBD has instilled a profound sense of empathy in his 13-year-old son because he has not only witnessed his dad go through the ups and downs of chronic illness, but London has also shared other peoples’ stories from the patient community with him as well.
“Some people ask me for advice on how I navigate different topics in life, and I share many of those stories with my son so he can understand different things that are actually happening in the real world and paint a picture of what some people have to deal with, that may not be visible on the surface.”
London says his son has been through this journey with him since day one. He can still remember when he first started experiencing symptoms and he knew something was wrong and trying to explain that to his child.
“He watched me spend hours in the restroom and was there for me as much as he could. I have always felt open and able to talk to him about this topic, more than anyone else.”
London sees his ostomy as a great learning opportunity for his son.
“As a dad, having an ostomy is kind of a great experience to have because of all the life lessons and teaching opportunities that it creates when raising children. You learn a lot about yourself during this journey and it allows for a lot of realization about the important things in life, which are all transferable when raising our children.”
Brandon Gorge of Michigan has five-year-old and two-year-old sons. Diagnosed with ulcerative colitis freshman year of college in 2003, he’s grateful his IBD was under control for 11 years while on Remicade/Inflectra infusions and now Stelara for the last year and a half.
“My sons wake up early and I love to wake up with them, have breakfast and play before getting the day started. With their ages, my biggest challenge is having to run to the bathroom while my wife is still sleeping. I used to have to wake her up to cover for me, but now they’ll play while I’m in the bathroom or come in with me. I tend to schedule doctor appointments and lab work early in the morning. Making sure my wife knows my morning plan is important so she can schedule accordingly, and we can make sure the boys are set for the morning/day.”
Brandon credits his wife for being a great listener and support.
“She comes with me to colonoscopies and to Crohn’s and Colitis Foundation events. My parents are still a huge support as they helped me find the right doctor when I was diagnosed with UC a week before moving out of state for freshman year of college and continue to be a sounding board for my UC. They’re also involved with the CCF because of me.”
His older son broke his arm when he was four and has been extremely interested in how the human body works and heals. Brandon and his wife found a YouTube video series called “Operation Ouch” by two British doctors. One video they stumbled on is about a girl with IBD.
“He said it wasn’t interesting because he couldn’t see her booboo. I explained to him that some people have booboos that you can’t see, and I have the same one as the girl in the video. He knows I go to the “tush” doctor regularly; they take pictures inside my body – and I’ve showed him the pictures, I give myself shots, and getting a shot is no big deal. Talking about the bathroom is very normal in our family!”
Brian Greenberg of New York was diagnosed with IBD when he was 11 years old, he’s now 39. He says juggling and finding a balance for all things in life is difficult. Between being a husband, a father, and then having a career, and managing chronic illness on top of general health, it’s a lot.
“My family is amazing. My wife knows there are nights where I have to tap out, and she understands when this happens. My family and her family have also been supportive that it took me a little longer to settle into being a dad and learning how to add everything it comes with to my 24/7 job of being a Spoonie. But their patience has paid off and I feel like after a few months of being a father, I found my stride.”
As an ostomate with a 17-month-old daughter, Brian says while she still has no idea what she’s seeing, him and his wife have started the education process with the books “Awesome Ollie” and “Ollie the Bear.”
“It’s teaching her that after some challenges and the fact I’m a little different now, I’m still capable of so much, which I hope to show her one day.”
Trying for a family as a man with IBD
Brad Watson-Davelaar of Canada got married earlier this year and now him and his wife are hopeful to start their family. Brad was diagnosed with Crohn’s disease in 2001 at age 17. Since then, he’s never been in remission.
“I used to be worried about having kids since my IBD has never been stable. Since meeting my wife five years ago, I’ve learned that she and I together are a wonderful team. I’m very much all in for kids. Being an uncle really solidified my desire to be a dad. We’ve been trying for two months and we’re hoping my wife is pregnant by the end of the year, which is a big ask as I’m preparing to go in for a laparoscopic right hemicolectomy with abdominal-perianal resection transanal total mesorectal excision with permanent colotomy later this year. I don’t know how my mental and physical state will be afterward.”
Brad and his wife have talked about the possibility of their children having IBD, but both agreed that if that is the case, they will 150% be there as a support and advocate for our children, something he lacked in his own health journey.
“We’ve also talked about how I will be a stay-at-home dad, as I’ve been on disability for a large majority of my adult life. I know there will be rough points where I will feel like utter garbage and just not feel like being there. But I know even if I let myself get to that point, my wife will be there to help. We’re making sure to move ourselves to where we will have a good support system if anything happens. Having a strong partner makes it easier to be ready and excited for what the future holds.”
With everything going on in the world, Brad says it’s a bit daunting to become a dad.
“I’ve been doing my research. I really want to make sure to do the right things. I treat the prospect of fatherhood much like I manage my IBD. Lots of research and staying open to change. I am so excited to be a father though. I feel like it’s what I need in my life.”
Reflecting on how IBD changes through each parenting season
Alistar Kennedy of the UK was diagnosed with ulcerative colitis in 2000. Now as a 49-year-old married father of two he’s able to reflect on how his IBD journey has impacted fatherhood and family.
“When you have a chronic illness your energy and time are limited. Having children can be exhausting and all-consuming even without health issues. The biggest challenge I found when my children were very young was coping with their boundless energy, their desire to be active, and trying to enjoy outdoor play. Active IBD can be a big issue in those circumstances, fatigue was a real struggle, but also the need to keep near to facilities in case you need them. This meant solo parenting was hard, but good planning and an understanding partner made the normal things achievable. Also, as the kids grew, they became more aware of what was needed from them. Empathy and adjustment to surroundings.”
Speaking of empathy, Alistar says his kids are both very aware of his IBD and how it’s impacted their family.
“My kids have grown up knowing I might have a day when I’m unable to do things due to fatigue or have to make a dash to facilities. Being open and honest with them from an early age has given them a broader understanding of the struggles a lot of families have. They are both very caring individuals. As a family, we are flexible and everyone understands that, sometimes plans must change. We make the most of the good days.”
Since being diagnosed, Alistar sees great promise for the future of IBD treatment and care in the years ahead.
“Medication, treatment plans, the role of diet, and the importance of mental wellbeing has advanced dramatically in the last 20-plus years. I see far more hope from the future about what this disease will mean for all of us and how it will or won’t dictate our lives. If you want to start a family and enjoy everything that can bring, you can. It won’t change the fact teenagers can’t load a dishwasher properly! I’m very proud of the fact that I did the school pick up and drop off for 10 years solid without either child getting a single late mark!”
Dan Bradley of the UK recalls how differently IBD impacted his role as a dad when his children were younger.
“My youngest child is 17, so I don’t feel like my IBD affects my children in a big way. When I was diagnosed 8 years ago it created a huge challenge with being a dad and dealing with the lethargy and fatigue. It was a struggle to be able to do my day-to-day activities and be there for the wants and needs of my children since they were too young to understand my illness and what I was going through as a parent during that time.”
He feels his disease helped shape who his children grew up to be as they enter adulthood.
“I like to think my children were brought up to offer empathy to others, but my IBD has certainly given them a deeper understanding about stomas and the complications that can arise with chronic illness. There’s nothing like telling your 16-year-old daughter she needs to get out of the bathroom quickly when she is trying to get ready for a night out!
Thomas Fowler of New York was first diagnosed with ulcerative colitis in 2004 when he was 30 years old, then three years later he found out he had Crohn’s. Since he was first diagnosed, he’s undergone more than 25 surgeries and currently deals with anal fistulas. He says life as an IBD dad is about finding your “new normal” and that it helped him to have a decade of life with IBD prior to taking the plunge into parenting.
“We talk about Crohn’s all the time, so my kids accept me as I am because they don’t know Daddy without Crohn’s. I sense that they know when I’m having a bad day or flare. I tend to shutdown socially and don’t talk as much. Fatigue is my number one battle in life. I don’t mind the bathroom trips as much or the daily pain, it’s the fatigue. It’s the one symptom that I can’t fight.”
Recently, Thomas says his latest challenge with IBD and fatherhood is juggling his Crohn’s with his son’s baseball season.
“I am not able to eat dinner before baseball practice/games. My son 100% understands why. And sometimes my son will ask to go and get ice cream after a game, and I say I can’t because Daddy has to get home and eat real food first. Sometimes that means eating at almost 9 pm. Which presents another issue in and of itself, because if I eat that late, I automatically know I’m going to be up several times during that night to use the bathroom.”
Why men with IBD tend to stay silent
As an IBD mom of three myself, I’m aware in my extensive advocacy work how our patient community is predominately made of female voices and experiences. For many years, the male experience has been lacking and is often difficult to find.
“Men are conditioned not to share their detailed emotions. Often told to ’suck it up’ and just get on with it. Sharing can make you feel vulnerable and fragile to our peers, so we avoid it. It shouldn’t because it’s incredibly empowering and rewarding. I was diagnosed pre-social media and at the time, advice, and information available online was vague, confusing, and often misleading. It felt very lonely to have IBD back then. Being part of an online community has been game changing. Men struggle to engage and verbalize in this space though, but they are there. Personally, I’m very facts and evidence driven, so the advocacy space must reflect that,” said Alistar.
“We’re taught at an early age that we’re supposed to be tough. That we shouldn’t be sick or show any weakness. That stereotype is slowly being broken as men are learning that even our health can change in a moment, and it’s okay to be vulnerable,” Brian explained.
“I co-chair the Crohn’s & Colitis Foundation’s Detroit Young Professional Group. One of my co-chairs is also a dad. Our group is evenly split between men and women. Before I became involved with the group, I never participated in any type of group for support or advocacy. I think a lot of men (and people with IBD) need to learn how to advocate for themselves with insurance and their medical team before they advocate and help others,” said Brandon.
Dan said, “I think it’s a typical man thing. IBD is not talked about. Some of the symptoms that come with IBD, in particular going to the bathroom, can be seen as a taboo subject. I do feel this is changing and more awareness is getting out there. In the UK, we have recently had a couple of “famous” people raise awareness which has been fantastic.”
“I think in the society we live in today makes it harder for men to be vulnerable with their feelings. In my situation, even I still struggle sometimes talking about certain topics with new people. I do however acknowledge the difficulty and try to work through it,” said London.
Advice for future IBD dads-to-be
Whether you’re in the throes of trying for a baby or if you’re a parent and your child has IBD, and you worry about his future and what it will hold in regards to fatherhood—here’s some amazing advice to guide you and show you all that’s possible.
“There are always more good days than bad. Having children is a wonderful, if very tiring, gift. They change you for the better and help you to grow as a person. Getting my IBD under control has been incredibly challenging, but we’ve done all the things normal families do. Be open and honest with your partner about your fears, priorities self-care and mental wellbeing. Talk and share your feelings to your family and friends. Don’t be hard on yourself. Take naps! The best advice as an active parent is always that good up-front planning and working as a team is essential,” said Alistar.
“Talk to your gastroenterologist to ease any fears about the effects of medicines or worsening IBD, develop a treatment plan, and revisit that plan before a flare gets out of control and affects you being able to be there for your kids,” said Brandon.
“I would tell fellow men not to let IBD stop them from becoming a dad! They are very well capable of having a healthy child, but it starts with them taking initiative and becoming healthy (mentally/physically) themselves before-hand,” said London.
Brian said, “Becoming a father with a chronic illness like IBD is scary. I wasn’t sure how it was going to work, how I’d be able to adjust to everything I was about to add onto life, or where would I find the energy. But you find answers to all those things because the love your heart is filled with carries you through so much, and it’s more important than anything else in life to find a way.”
“Don’t hesitate to start a family. There will never be a “perfect” time to have a kid with this disease. Don’t set goals like, I’ll start a family when I’m 2 years symptom free, or when I don’t have a surgery for 3 consecutive years. You will always have issues for the rest of your life. The only hard part I had was when my kids were newborn through toddler age and I had them by myself away from the house. You get very creative with bathroomn visits. I would use the diaper changing tables and strap my kids in and let them use my phone for distractions so I could use the bathroom. You become a logistical genius when leaving your house. Being a dad is the BEST thing that has ever happened to me. And a hug from your kid is better than any medicine money can buy when you are having Crohn’s related issues,” said Thomas.
“There is no reason on earth to allow your IBD to stop you from becoming a dad if that’s what you want to be. Go for it. Be open so everyone knows where you stand. With the right medication and treatment plan in place, there really isn’t anything you will be stopped from doing. I enjoy long bike rides, long walks with the dog, and a pub lunch after reffing my kids football games. I have flown with an ostomy without issue. If you think you may have IBD, don’t ignore your symptoms. See a doctor and get yourself on the path to treatment so you can live life as fully as possible,” said Dan
Pregnancy and motherhood look differently for women who have an ostomy. And not just physically. But also, emotionally, and mentally. The path to motherhood is unique for those of us in the IBD community and we’re living at a time when more research about pregnancy and breastfeeding is right at our fingertips, all of which sets IBD moms and moms-to-be up for success.
Whether you’re on the brink of needing an ostomy and fearful of what this means for your future. Whether you’re a mom of a young girl and worry about whether your daughter will ever be able to be a mom. Whether you’re newly diagnosed and can’t imagine your damaged body bringing a life into this world. Whether you just took a pregnancy test after a bag change and can’t believe it’s positive and don’t know what to do next. These transparent and real-life patient stories will bring you hope and help empower you in coping, preparing yourself, and working with your care team, if carrying a baby is something you hope to do one day.
This week we hear from several ostomates—some who are moms, others who are pregnant right now, and two women who got pregnant after having a proctocolectomy (removal of rectum and colon).
Krista Deveau was diagnosed with ulcerative colitis as a child. After having two bowel resection surgeries and her ostomy surgery over the course of 10 years, she was worried about whether being a mom would ever be an option.
“The reason for getting a temporary ileostomy and avoiding even more scar tissue, was because of I wanted to start a family with my husband in the years to come. To my surprise and my GI’s surprise, we got pregnant much easier than expected, truly a blessing because this isn’t always the outcome for everyone.”
She’s now 24 weeks pregnant and expecting her first baby in June! Krista says this is the best she’s ever felt. Her symptoms have been silent aside from having phantom rectum/poop and passing mucus more frequently lately.
Krista is on a dual biologic treatment plan (Stelara and Entyvio) every 4 weeks. She plans to stop her Entyvio treatment at 32 weeks and resume her infusion in the hospital after she delivers. She’s still in the process for determining her game plan with Stelara. She also takes prenatal vitamins, vitamin D, and b12 shots. She expects she’ll need iron infusions before baby arrives.
As of now, she plans to do a vaginal birth. Due to not having perianal disease and already having significant scar tissue and adhesions from previous surgeries, her care team determined this plan with her. Like any IBD mom-to-be, she worries about the ever-present threat of a postpartum flare, having to be hospitalized and be away from her baby, and possibly passing her disease onto offspring.
Katie Cuozzo was diagnosed with Crohn’s disease when she was 5 years old. She’s had concerns about not being able to get pregnant for as long as she can remember. Now, she’s 34-years-old and a mom of three girls. Her oldest daughter was 18 months old when she received her ostomy, so she’s been pregnant with and without a bag.
“The only difference that I noticed between pregnancy with an ostomy versus without was how to dress. As my stomach was getting bigger, it was a little harder to disguise my bag. I would mostly wear baggy clothing. With my first pregnancy, I was able to deliver vaginally, I had c-sections with my younger two.”
Katie’s perianal disease got significantly worse after delivering her firstborn. Originally, she was planning to have a temporary colostomy, but her symptoms didn’t improve so she decided to get a total colectomy. Despite her IBD causing her so many issues, Katie was able to conceive on her own without any problems.
She remained on her medications during all three pregnancies. She took Cimzia during her first pregnancy and Stelara during her other two pregnancies. Katie also continued to take her prenatal vitamin, vitamin D, vitamin b12, and calcium supplements. She also breastfed all her children.
“As I was planning for ostomy surgery, my surgeon told me that if he did a total proctectomy- removal of my rectum, my chance of fertility would decrease significantly. I made the choice to keep my rectum in place until I was done trying for more kids. I am now at a place in my life where I am beyond blessed with my three daughters and am ready to have my final surgery to remove my rectum, knowing that I will likely never be able to have more kids.”
Katie says she was amazed at how great she felt while pregnant. It was the first time in a while she was having regular, normal bowel movements and was able to eat anything and everything without having abdominal pains and needing to run to the bathroom.
Katie Nichol was diagnosed with ulcerative colitis in 2018 when she was 30 years old. She went through an emergency subtotal colectomy surgery in October 2019 to remove her diseased large bowel/colon and an ileostomy was created.
“I was told that I would keep my rectal stump to further my chances of being able to have children in the future, but my doctors told me to seriously think about having my family before my next operation, either a total proctectomy or j pouch surgery. Personally, I never thought I would ever be able to get pregnant after surgery as it was such a big life change and a lot of trauma had happened in my abdomen with surgery.”
Katie and her husband had been trying to conceive since before her IBD diagnosis. She didn’t know anyone in real life with a stoma. It made her anxious as she was unsure how her body would respond if she got pregnant and how it would affect her stoma, intestines, and overall health.
“After receiving my ileostomy, I felt so much healthier, happier, and started to think that my body would be able to conceive and start our family. My IBD team and surgeon kept saying at appointments post op that if I wanted a family I would need to start trying in the next couple of years before my next operation.”
Katie says her surgeon wanted to ‘preserve her pipes’ and advised her that a vaginal birth may cause some damage from pushing. Her care team warned her about the possibility of her rectal stump or stoma having the chance to prolapse, so she went ahead and scheduled a c-section.
“One surprise I used to get was when the baby was lying to my stoma side (right hand side) it would sometimes look like I had a hernia around my stoma sight, but the baby was underneath my stoma, this freaked me out a good few times, but it was amazing to see the baby move and my stoma still standing strong on my stomach.”
Katie took prenatal vitamins, iron, and was on a rectal foam for her rectal stump while she was pregnant. Since her stoma surgery, she is no longer on medication. Now she takes suppositories for her rectal stump before bed.
Receiving a Total Colectomy as a mom of two
Kimberly Hooks was diagnosed with ulcerative colitis in 2011. She was 28 years old. Her oldest daughter, Briana, was five years old when Kimberly received her IBD diagnosis. After nine years she was able to reach remission and became pregnant with her second child. Kimberly had a three-stage J-pouch procedure between the fall and spring of 2020. She was an IBD mom of two while all of this was going down.
“I honestly did not want to accept that I had to have three surgeries. I was utterly devastated when I found out that I had to have a total colectomy. My surgeries were scheduled during the height of the pandemic in 2020. Mentally, I could not wrap my head around the fact that I would not be there for my family, especially during this critical time in our lives. I felt hopeless; I felt defeated as a mother and wife.”
Kimberly’s colectomy was unexpected. She did not have time to process anything.
“We often put ourselves last; however, I was not given a choice in this case. The reality was I had two more surgeries to undergo, and I understood that I have a family that loves and supports me. I realized this was my time to ensure that I did what I had to do to heal, recover, and finally be the best mom and wife I could be.”
The experience impacted Kimberly and her family in the most positive way. Her husband and daughters rose to the occasion day after day to offer love and support and saw Kimberly as their hero. She was discharged from the hospital after getting her ostomy on Mother’s Day and her daughters made her signs and gave her flowers.
“All the while, it was me who had to accept that living with an ostomy is something to be proud of. At first, mentally, it was a hard pill to swallow, but after awhile I realized that my ostomy bag saved my life; I will be forever thankful!”
Pregnancy after a Proctocolectomy
Kayla Lewis was diagnosed with Crohn’s disease at age 10. When she was 24, Katie had surgery and received her ileostomy. She says that’s the first-time fertility and her future as a mother crossed her mind. Then, in 2017 she became incredibly sick. She tried what she thought was a temporary ostomy for six months. Then in a follow up scope her GI perforated her bowel.
“When I woke up, I was informed that my entire colon was scar tissue so much that the camera could barely go into the bowel before perforating it. At that point, I was told my options were to leave the colon and rectum or schedule to have both removed, but either way, the ostomy was suddenly permanent. I did not want to resort to that initial surgery till I knew I had exercised all other options available to me including meds, treatments, and diet. Being that surgery was my only hope at gaining life back, I never fully questioned how it would affect my fertility. I did briefly ask the surgeon if I can still have kids one day. He responded with a simple ‘yes’ and I left it at that.”
Even though Kayla says she still would have continued with her proctocolectomy regardless, she wishes she would have thought to ask more questions. Thanks to her ostomy, Kayla has been in remission for 5 years. She felt like family planning could be on her own terms.
“Being 12 weeks pregnant with an ostomy has been much smoother than I had envisioned for myself. I work as a nurse in an operating room, so feeling nauseous and vomiting was my biggest concern early on. I have a small body frame, so maybe once the bump starts to show, I will experience stoma changes. Hopefully, nothing more than just cutting the wafer a bit smaller or larger.”
Currently, Kayla takes Imuran and Allopurinol daily and injects Stelara every 8 weeks. She also takes a prenatal vitamin.
“I was always told that when the time comes for me to become a mom, it would have to be via c-section and not vaginally. I knew this well before my ostomy, because I was warned how difficult it could be for me to heal from tearing as well as could trigger a flare. After my proctocolectomy, I knew without a doubt, I would need to schedule a c-section to play it safe.”
Lori Plung was diagnosed with Crohn’s Colitis in 1980. She was 16 years old. Two years after her diagnosis her disease became severe. As she reflects, she remembers being very worried about ever being healthy enough to be a mom.
“My mom was told by my GI at the time that he didn’t have a good feeling about me being able to have children. This was not shared with me at the time, and this was well before surgery was mentioned to us.”
In 1988, Lori had a proctocolectomy. She remembers lying in the hospital bed before her surgery and a local IBD mom and her toddler coming to visit and show her all that’s possible with an ostomy.
“I believe what was missing, was a conversation with my doctors about how my anatomy would change after surgery and the possibility of scar tissue building up near my ovaries, fallopian tubes, and uterus. Therefore, making it harder to conceive. When it was time for us to try for a family, we couldn’t conceive on our own. In the back of my mind, I knew my insides were shifted around and I had a strong suspicion that mechanically things were not working correctly. We tried for about 6 months and started investigating fertility options. We didn’t wait the full year as often recommended because I was feeling well —and as we know with IBD, when the disease is under control, It’s the optimal time to be pregnant.”
Lori went through many fertility treatments and said no one blamed her proctocolectomy as the culprit. She ended up having scar tissue on one of her fallopian tubes. She got pregnant with her first child through IUI (Intrauterine insemination) and her second through IVF.
She remembers telling her husband she didn’t want their kids to have memories of growing up with a “sick mom.” She had three more IBD-related surgeries, numerous hospital stays, and says her energy was drained, but she prided herself on her inner strength and determination to always push through no matter what.
Lori says if she could talk to her former self, she would tell herself not to feel guilty about needing to stay home and do quiet activities because she was having a hard Crohn’s day.
“Not to be hard on myself when we sat and watched Barney (my daughter Dani’s favorite) or Teletubbies (my son Jesse’s favorite) because I was too exhausted to move. Not to feel guilty when everything fell on my husband, especially through each surgery and recovery. It’s ok to ask for help and not feel guilty.”
Lori’s kids are now 23 and 26. She still can’t believe she’s been able to be a mom and be there every step of the way as her kids thrived through each stage and season of life.
Advice for fellow ostomates about pregnancy
If you have an ostomy, you can have a baby. Don’t let your ostomy hold you back. Work with your care team to know when the right time is and if there would be any issues with getting pregnant.
The body has a way of coping no matter what. Your past trauma prepares you to handle the unknown and celebrate every win—big or small, along the way.
Keep the faith. You may run into roadblocks but exhaust all options before you throw in the towel. Miracles happen every day, stay hopeful.
Find a care team well-versed on IBD. A medical team who understands your complexities and who is supportive will make your experience with pregnancy and an ostomy a positive one. Have all hands-on deck and connect with your IBD team, surgeon, ostomy nurse, and Maternal Fetal Medicine (MFM) group. It will give you a sense of security as you embark on this wonderful and exciting adventure. Your ostomy nurse will be a huge resource—as your belly grows, so will your stoma.
Be mindful of ultrasound gel. Be prepared at OB-GYN and MFM appointments by bringing extra bags and wafers. Try and make sure your ostomy is empty prior to ultrasounds and then fold it up or hold it up to keep it out of the way. Ultrasound gel can make the adhesive come off. Many of the IBD moms I spoke to said they change their bag after every ultrasound to make sure all the gel is off their stomachs, so the new bag can stick on properly.
Stoma size and output. Don’t be alarmed if the size of your stoma changes as your baby bump grows. Stomas go back to their pre-pregnancy size after babies are born. For some, output can get thicker, and you can have more gas, but that’s likely due to being able to tolerate more fruits and veggies. As your belly grows, your bag may dangle rather than being tucked away and become a bit uncomfortable.
Remember everyone’s journey is unique. While each of these amazing women are sharing positive pregnancy experiences, don’t forget all the roadblocks, flares, and health issues they had to overcome to get to this point.
Ostomies gave you life and enable you to bring life into this world. For many IBD moms it’s surreal to experience your body go from attacking itself to nurturing and creating a life. Pregnancy provides a renewed love and appreciation for all that our bodies are capable of, despite our IBD.
Connect with other ostomates over social media and through support groups. Don’t hesitate to reach out to women who are living your same reality on social media. We’re all a family. Peer to peer support is amazing, reach out to fellow IBD moms. Here are the Instagram handles for the women featured in this article. Give them a follow!
When she’s not on the runway during Fashion Week or gracing magazines, Keyla is doing all she can to be an advocate for IBD. She was diagnosed with ulcerative colitis eight years ago, but this year, she found out she has Crohn’s disease.
“As a child, I always had intense stomach aches, and difficulty going to the restroom. Sometimes I’d even pass out. Doctors always told me it was constipation. It wasn’t until I was at work one day and passed out that my boss convinced me that I needed additional medical attention.”
At that point, Keyla was having 8-10 bloody bowel movements a day. Prior to ulcerative colitis, she was diagnosed with celiac disease and went on a strict gluten free diet. But unfortunately, the symptoms persisted. She got a second opinion and that’s when she was diagnosed with IBD. Keyla recalls that in the beginning moments of her patient journey she struggled to grasp that chronic illness meant her disease was a “lifelong partner” and that IBD would change her life in unimaginable ways.
The journey to an ileostomy
Fast forward two years after her IBD diagnosis and Keyla rushed to the hospital after noticing unexplained bleeding. Turns out she was hemorrhaging from her uterus and was told she had uterine cancer.
“After having a partial hysterectomy and no longer being able to have children, I’m not sure if it was the stress from everything happening but my UC was never able to be controlled after that. From failed medications like Methotrexate and Remicade to looking like Quasimodo from eye swelling caused by Entyvio and having less hair than a toddler from being on Humira. My body and I had enough. My clinical team and I decided it was time to evict my colon.”
In September 2018, Keyla began her 2-phase j-pouch procedure. Unfortunately, the surgeon discovered her colon was much more diseased than he had thought. Keyla’s colon had become fused to her stomach, resulting in part of her stomach to be removed as well.
“For 2 months I felt amazing with my ostomy and was excited for my reversal in December 2018. But shortly after, I began developing chronic pouchitis, could not gain weight, required IV fluids regularly, with a failed midline and then needed a central line. We decided to disconnect my j-pouch and create my end ileostomy in September 2020.”
All was well until January 2021 when Keyla started bleeding from her ileostomy. It was at this point she was diagnosed with Crohn’s disease and started Stelara. After a few hospital stays and some improvement with her symptoms, she began to experience an increase in rectal pain, urgency, and discomfort, so Keyla needed yet another surgery.
October 27th (less than one month ago!) she had her j-pouch removed with a proctectomy and officially made her stoma permanent. She’s recovering from this surgery as we speak.
How Modeling Came into Play
After reading that challenging medical history, you may wonder how Keyla finds the time to focus on a profession. Modeling is something Keyla always wanted to do when she was younger, but she was too embarrassed to tell anyone. She sort of stumbled into it. Keyla had done a fun photoshoot with a friend and those photos were shown to another friend who works in the fashion industry. Before she knew it, Keyla was a published model!
“Sometimes I still can’t believe I’m living my dream despite having health issues. I had the honor to walk at London Fashion Week this year and have been published in magazines out of the US, UK, and Canada.”
SURREAL Lifestyle Magazine and 4 Seasons Magazine have been her favorite features thus far because the publications have allowed her to speak about her IBD advocacy work. Modeling serves as the perfect platform for spreading awareness to others about ostomies and life with Crohn’s.
“I always try to take the time for myself and make sure I am doing the things my mental health needs to stay focused and feel well. I also try to own those feelings. If I’m symptomatic, I try to accept it and openly communicate my struggles with others.”
Keyla says having an ileostomy can make modeling a bit more complicated, especially if she has to wear form fitting or tight clothing. If that’s the case, she ends up having to empty her bag more times than she really needs to. She’s grateful her modeling gigs have followed strict COVID guidelines, which helps her feel more at ease during these uncertain times.
When a project allows, she especially enjoys getting to show her ostomy in photos or on the runway. She chalks that up as her biggest career win of all!
A model mother
Keyla’s main focus whether she’s modeling or fighting a flare in the hospital is her family. She has an 11-year-old son who inspires and motivates her to push through the difficult days.
“IBD has made motherhood challenging. Without chronic illness motherhood can be difficult as it is, adding health issues on top of it makes it more complicated. I constantly question whether I’m making the right choices. But I also tell myself all I can do is try and hope that I’m being a good role model for him.”
It pains her to see how her son gets anxious about her IBD and healthcare. He’s been by her side every step of the way since she was diagnosed after he was born. Despite the highs and lows, Keyla feels her son is stronger because of her illness and has an innate sense of empathy and understanding for others.
If her IBD has taught her anything it’s that good days give us happiness and bad days give us experience. Modeling has enabled Keyla to be comfortable in her own skin and live the life she imagined long before Crohn’s was ever a part of who she was.
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 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.
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.