When Crohn’s Tries to Stop you from Being Super Dad: How One IBD Dad Finds Balance

The IBD community is flooded with countless female advocates. I’ve recently been vocal about the need for more men to stand up, share their stories, and be a voice for the community. If you attend a conference or an IBD patient advocate event, 90 percent of the room is female, the same can be said for social media.

This is surprising since according to the Crohn’s and Colitis Foundation, IBD affects men and women equally. That being said, in my experience speaking with men young and old with Crohn’s and ulcerative colitis—many tend to suffer in silence, downplay their pain, or prefer to keep to themselves about their struggles. While the disease may physically manifest itself and impact men in different ways, it’s the way many feel embarrassed to share their experience, that I wish could change. Colby and Hallie 1

This week—a guest post from Colby Reade. Colby is a husband and a dad who also has Crohn’s disease. He shares insight about his struggles to find a balance between IBD and family life, while offering helpful advice for how to be a “Super Dad” despite your illness. I’ll let him take it away…

I grew up believing my dad was a superhero. There was nothing he didn’t know or couldn’t fix. He would spend hours with my brother and me teaching us how to hit a curve ball or box out a defender on the basketball court. He worked insanely hard to help provide us with a comfortable life. He showed us what it meant to be a partner in a marriage. In my eyes, he was “Super Dad.”

For as long as I can recall, I wanted to live up to that image and a little over four years ago, I got my opportunity when my wife gave birth to our daughter. Nothing is more important to me than being a solid dad and husband. Fatherhood is undoubtedly the most rewarding experience of my life, but also the hardest thing I’ve ever chosen to tackle largely because it is so important to me to be good at it. Ethels Birthday

Unfortunately, life through us a curveball in 2017. What I thought was a case of nervous stomach from a stressful stretch at work turned out to be a Crohn’s flare that lasted 10 months. Not only was I terrified about all the symptoms (digestion issues, pain, fatigue, weight loss), but I felt myself struggling to take on the most important “job” I had.

I was too tired to play or engage when I came home from work…flopping on the ottoman in our living room, trying to pry my eyes open.

I was in pain all the time and struggled to find joy in daddy-daughter games.

I was terrified to be more than five feet from a bathroom so outings to the mall, the zoo or the beach were on hold.

OrchidIt took time and some trial and error, but as I navigate my somewhat new diagnosis, my wife and I have learned how to best monitor my symptoms to try and avoid future flares and take Crohn’s on as a family. In addition to my medical care, this includes some key strategies to how we approach parenting.

Here’s 5 ways we tackle parenting with Crohn’s:

  • Explain to your kiddo what’s going on. This has to be done age-appropriately of course, but it’s important that you don’t hide from your children that you are sick. It is not a failure to admit that you have an illness. Communicate to them that you are under the weather and need their help to adjust your usual routine until you feel better. My kiddo LOVES playing nurse and taking care of her mom or me when we are sick so we can make it into a game.
  • Create activities that don’t involve a lot of energy. While the digestive problems were hard, the fatigue was the worst for me. We started a list of low-energy activities I can do if I find myself mid-flare, such as board games, playing with my daughter’s doll house, and working on crafts.
  • Communicate with your significant other and boss. ThanksgivingMy wife is amazing and understands the physical impacts of a flare, but it’s my job to share with her if I’m feeling Crohn’s-y. Similarly, I have started a dialogue with my boss, so if I flare, I don’t have to pour every ounce of limited energy I have into work and come home completely empty.
  • Find an online community. It can be tempting when you are sick to start Googling your symptoms. This can be a big mistake with IBD because everyone’s case is different and the treatment plan for one person will be greatly different from another’s. However, engaging with an online community either on Twitter, through a Facebook group or an online forum, can be a great resource to gather measured feedback and share your experience.
  • Be kind to yourself. As modern, involved dads we put ourselves under tremendous pressure to be both provider and nurturer. When our bodies are compromised, it can feel like we are failing, weak, and less than. Whether you talk with a counselor, join a support group, or meditate… or all of the above, it’s important to find ways to remind yourself that just because your body is taking on IBD, you are still Super Dad.

You can connect with Colby on Twitter and Instagram (@colbyreade).

 

An ode to Dads: A letter from a father of four with IBD

I’d like to give a shout out to all the dads out there who have inflammatory bowel disease, yet persistently persevere to make life happen. christian3  

I have been dealing with UC/Crohn’s for 18 years now, and in that time, I have had seven surgeries, countless procedures, two near death experiences, my colon removed, a j-pouch, my ego scared, and my relationship with God strengthened.  I’ve tried every prescription drug, had every side effect, and continue to fight the good fight on a daily basis. christianI’ve also been blessed with a beautiful wife and life partner, as well as four amazing children (10, 7, 3, and 9 months). This takes an already difficult situation, and adds more “life” responsibility as well.  

You see, as a father, you place the needs of your family and children above your own.  A father doesn’t really get a day off. And when you’re dealing with health issues that can cause daily battles, it’s easy to find yourself in a place of self-pity, weakness, or doubt.  That’s why I’m absolutely amazed to see the strength of all the dads out there that can deal with this struggle, but continue to be a dad first, push through, and ensure that “life” still happens. You see, Crohn’s doesn’t mean you can miss baseball practice, the soccer game, the anniversary dinner, or just “life” in general. Life will go on with or without you, so all those with chronic illness are heroes in my mind.   In fact, being a father of four has been the most motivating and rewarding things we could have done as a family. christian2

I can remember when I was recovering from one of my more recent surgeries, my family came in to visit me in the hospital.  Like most fathers, I felt the need to provide for my family, get back to work, I just had to get going. I just didn’t have time for this!  There are MORE than enough reasons for everyone impacted by IBD to feel defeated, want to give up, or take an easy route. My family is a CONSTANT motivation for me to keep going and keep fighting the fight. I cannot and will not let them down. I think most fathers feel that way. We are here to help shape our children, and ultimately provide the ability to learn, have fun, be kids, and eventually mold them into productive members of society.  It’s a tall order for us all, but I think men with IBD have learned to be persistent with their health battles, and that also helps us to persevere through the trials and tribulations of fatherhood.

So today and every day, I commend all of those fathers who refuse to let their disease dictate their life.christian4 Take the time to get to know a father with IBD, and you will meet one of the most courageous strong willed people in the community. As a man, we can sometimes let ourselves down because as an individual, it just impacts me. But as a father, that is not an option.  We must persist, have faith, and fight the fights every single day, so that we can continue to mold and shape our children, and provide support and guidance for our families that mean absolutely everything to us.  

We are motivated, we are strong, and we have IBD.  Above everything else though, we are blessed to be a father, and if lucky enough, a dad.