Men and Inflammatory Bowel Disease (IBD) - Part I
In honor of Father's day this month I've decided to focus on men and how IBD affects them. At first, I didn't think I would have much to discuss on the topic, though, seeing as I'm a woman and can't jump inside a guy's head. But, between my own experience with my Dad, who, like me, has Ulcerative Colitis, and some other gentlemen I know through my IBD advocacy it turns out there is much to discuss. So, this will be the first of two Shareposts I will write on this topic and this first one will focus on my Dad.
For me, personally, Inflammatory Bowel Disease (IBD) didn't become a daily part of my life until I was 30 years old. But in reality, IBD has been a part of me my whole life, through my Dad.
As a child, long before my own IBD diagnosis, I had no idea my Dad had Ulcerative Colitis (UC). My Dad was just my Dad. I had no idea that the long periods of time he spent in the bathroom weren't typical. And as children we didn't question the medication that my parents might take, like the tiny, white pills my Dad took on such a regular basis that he tucked them into a small plastic box in his shirt pocket. I would later find out those pills were Lomotil, and they are prescribed to help slow down the gastrointestinal tract. Neither of my parents played with us much, but then again neither did any of my friend's parents, so that wasn't out of the ordinary either.
It wasn't until I went to college that my Mom told me my Dad had Ulcerative Colitis. And she only told me because I was having slight gut issues and when we went to the gastroenterologist's office they asked if there was any family history of IBD. After my appointment my Mom told me that my Dad was diagnosed around the age of thirty when he was in the Navy. They were married and already had two children, my older sisters. During one of his flare-ups he ended up hospitalized because of the loss of blood he had experienced. And the doctor's told my Mom to make sure all of his "papers" were in order "just in case." This was back in the early 1960's, so there wasn't much known about IBD, colonoscopy hadn't been invented, and their best treatment at the time was steroids. He lived, but ended up being medically discharged from the Navy. According to Mom he was very weak for many months and could only eat what I now call, "white and light" foods - baked chicken or fish, rice, scrambled eggs, yogurt, etc.
My Dad got his degree in dentistry and planned to practice in the Navy. But, when he was discharged he was on his own and had to figure out how to muster the energy and money to start his own dental practice. And that is the Father I grew up with, a man who was up at 6:00 A.M. and off to his office until noon when he would come home for lunch. Then he went back to the office from 1:00 - 5:00 P.M. He was involved in camera club, dental society, and played tennis every Wednesday night and at least one weekend day. He wasn't a Dad who seemed sick or oddly different than any of my other friends' fathers.
When I was diagnosed with UC in 1998 I really wanted to talk to my Dad about it. I hadn't been in the hospital for the severe flare-up that led to my diagnosis but I was very sick, very weak, and had even had to quit my corporate job. But, he wouldn't talk about it much. Honestly, this didn't surprise me. My Dad isn't a big talker about health or emotions. But, even so, when I talked to him on the phone I could tell from the sound of his voice that he was concerned about me. But, even when I wrote my first book - Living with IBD & IBS: A Personal Journey of Success (www.ibdandibs.com) - chronicling my journey from being seriously ill to being able to live somewhat normally again, my Mom told me that my Dad would never read it. At first I was hurt. But then she explained why.
"Your Dad knows what you're going through," she told me. "And it is very hard for him to know that you are going through the same thing and that he can't take the pain away. He wishes you didn't have this. And he hurts for you. But he just can't read your book because he doesn't want to know how bad things have really been for you. But, that doesn't mean he isn't proud of you and all that you have learned and accomplished."
This was interesting for me to hear. It was hard to realize that my Dad could know how bad the bouts of diarrhea, fatigue, pain, and embarrassment were. Yes, he could spend hours in the bathroom, but he never complained, he never missed a day of work (he was a dentist for 50+ years and I don't remember him ever missing one day of work - amazing!), and I don't ever remember him canceling a family vacation or dinner date or meeting or event. He seemed to have a very different reality from the one I knew of living with IBD.
It's funny, though, the older I get the more he and I do talk about IBD, not in-depth, mind you, but here-and-there. What started the conversation between us was when he started taking the same medication, Asacol, I take to help control the UC. It seems to give us something tangible to talk about that isn't poop-related. Now, that said, we don't have a lot of other similarities in how UC currently affects us. I am always amazed that my Dad can eat and drink anything he wants and it doesn't seem to affect his gut, while he is amazed at how drastically I've had to change my diet. This past March we were together in Florida and during a conversation I asked him how he did it, how did he just keep going, never having to take a day off, and not just have days where he wanted to give up because of the numerous bathroom calls or fatigue?
"I couldn't," he told me. "I had four children, a house mortgage, and a dental practice with a mortgage and staff. If I didn't go to work and see patients then I couldn't pay my staff or pay my bills. It just wasn't an option. I was scared to death every day, but I just kept doing what I had to do."
My Dad and I are a great illustration of how the same disease can affect two people, even people who are related, very differently. Yes, we have both had bouts of chronic bloody diarrhea, we both feel fatigue and exhaustion, we can both have daily symptoms, or weeks without a problem. We both work, but I now work from home on my own schedule because I have found I can no longer be a reliable 9:00 to 5:00 worker. And, unlike my Dad I do tend to cancel a lot of engagements, trips, and meetings.
I don't judge myself or my Dad for what I can't do that he could do. Things change. For the past 10 years he hadn't had a lot of UC troubles, but as of a year ago the inflammation is back and he is experiencing more daily and weekly symptoms. But again, I only know of this because my Mom shares it with me sometimes, like this past week when he was going in for another colonoscopy.
Next week I'll look at how IBD affects the lives of some other men I know. Until then, if you have a man in your life with IBD realize that just because they might not talk about it chances are their symptoms do affect them on a daily basis and an extra hug or helping hand where possible would be greatly appreciated.