Living (and Thriving!) with Crohn’s and Colitis: The Ostomy Guy
Do you want to know what you aren’t being told about Crohn’s, colitis, and all chronic illness for that matter? Seriously, do you really want to know? You might not like the answer. The truth has a funny way of forcing us to make a choice. You must choose sides, and making no choice at all is itself a choice. So, I challenge you right now to be open to my observations and to consider them seriously.
My name is Austin Powers (YES! Seriously!). I’m the author of “The Ostomy Guy Story: Memoirs of a Bagman” and the host of “The Ostomy Guy Podcast.” I was diagnosed with fistulizing Crohn’s and colitis when I was 10 years old in 1992. It all started because of a fistula opening near my rectum. At that time there were no answers as to how to physically handle something like this, let alone emotionally, and there still aren’t. Children of all ages are getting diagnosed with chronic diseases, and left with more questions; the important ones have too many answers, while the most important ones have no answers. Both leave you feeling paralyzed.
First, it’s hard. The spectrum of Irritable Bowel Syndrome (IBS) is so broad that each one of us seems to land on a different spot. With many different experiences, identifying where we fit and what path we’re most likely to travel, flusters our mind and weakens our will to fight. That’s the foundation of the chronic illness struggle. You will be weak emotionally because this battle happens in your world and on your calendar. Every day you will have to fight, via your diet and lifestyle just to give your body a level playing ground to defend itself against an illness. This will get old because you’ll get sick in spite of your efforts. You read that right. That’s what makes it hard.
Second, you have a chronic illness. EVERYONE will expect you to get over it as if you have a mild cold. The rule so far is that there is no cure for Crohn’s and colitis. Since the day of my diagnosis, I’ve been approached by over a hundred people with a juice, powder, supplement, super food, diet, or you name it; that would be the solution to my problem. In every pitch, someone with Crohn’s was cured, which hooked me in to buying. The disease evolved each time. Symptoms eventually returned in the same and sometimes new and different ways. It’s this way with many medications, too. I want to relieve you of some frustration, not create more of it. Whether we like it or not, it’s OUR illness and we have some responsibility to it. Constantly getting let down by drugs or treatments no longer working is almost harder than just living with the disease.
Third, you will feel totally alone until you share your story and realize there are others out there like you. There’s no other way of saying it. The reality is that everything we’re discussing here is important and imperative to your health and sanity, but the world doesn’t care, nor does it make time to hear about it. In all areas of life, my illness presents itself. I realized very early that even with boys, conversation about bowels is only funny under certain circumstances, otherwise it’s mostly TMI, too much information. I secluded myself and hid everything. That’s how I coped with it. Out of sight, out of mind. Always acting like someone I wasn’t, eventually caught up to me. Mine was in the form of depression and anxiety. I say it all the time, “Your head is like a bad neighborhood, you should never go through it alone.” I had to start talking to someone professionally to help me dig up everything I suppressed all those years. I wish I had opened up much sooner with someone about the mental side of living with a major illness. There’s no better time than the present.
Fourth, your suffering is not in vain. You know it and I know it. Let’s get this straight, I’ve never liked pain. I might act tough about it with the guys, but I don’t prefer or enjoy pain. However, I have found incredible value in embracing and allowing myself to be formed by the suffering in my life. The difficulties drew out perseverance and optimism toward life that helped me overcome hard times. The forever, chronic nature of my illness and its restrictions forced temperance out of me, which resulted in compassionate empathy toward others who suffer. The loneliness sent me on a spiritual journey, that I wouldn’t have gone on otherwise, to find the meaning of my life and the purpose of all this suffering.
I, along with everyone diagnosed with a chronic illness, have been given a great but hidden gift. As my mom used to say, “Austin, you don’t have to want it, but you have to take it and send your grandmother a Thank You.” Chronic illness is a lot like a daily giant multi-vitamin, just get a big glass of water and swallow it or you’ll choke. Then, wake up tomorrow and do the same thing. Don’t let all this information get stuck in your throat and “choke ya.” Get it down and let it digest.
My journey only began to gain clarity when I started seeing Dr. Ron Hunninghake at the Riordan Clinic in Wichita over 14 years ago. The collaboration of naturopathic care and gastroenterology helped me manage my illness and become proactive rather than reactive, as I’d been for so long. We created a baseline for myself and work from there for the most manageable life. Life’s not perfect, but it’s manageable, and that’s what we should all be searching for as we seek a cure.
I wrote my story to shine a bright light into the dark world that is living with Crohn’s and colitis and an ostomy bag. This is a map for those living with a chronic illness, to find their way to peace of mind in their daily journey. Make a sure link for your loved ones to deeply unite with the intensely personal life we live. This account was written to inspire every reader to go back to their life and live more intentionally and love more selflessly.
Austin Powers is a native of Wichita, Kansas and the proud father of four children. He has written a book, “The Ostomy Guy Story: Memoirs of a Bagman,” which is available on Amazon. He has bravely shared his story about living with Crohn’s and colitis for the past 27 years. Please support him by checking out his book or by tuning into his podcast, The Ostomy Guy Podcast (available on iTunes). His hope is to make you laugh, cry and feel better about being alive.