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