I respect anyone with the guts to put their face and their life story on the cover of a magazine without regard for what anyone else thinks. But while I feel that way, I don’t ever see myself doing the same. My closest friends and family know that I have an ileostomy, but no one at work knows and none of my peripheral friends know. And that’s just the way I like it — The Anonymous Ostomate.
I’m comfortable in my role as an anonymous ostomate, and I have a feeling that many in the community are much like me. I applaud those wanting to remove the stigma of having an ostomy and encourage you brave souls to keep at it. But for me, after years of suffering from Crohn’s disease, I just want to be Leslie, not sick Leslie or ostomy Leslie.
I am a 43-year-old full-time working mom, owner of two 1-year-old Labrador puppies (yes, my husband and I are a little nuts) and loving wife to a saint of a husband who put up with me while I suffered through a 12 year run of Prednisone-hazed Crohn’s. Since opting for surgery 4 ½ years ago as a way to get back my life, I don’t define myself by the disease anymore. But for those 12 years, it overwhelmed me and took away much of the joy out of my life.
During the last few years of college, I lived with my older sister in an apartment. A childhood friend of hers moved in with us and promptly got a puppy. I’m not casting any stones, since I myself have two crazy puppies, but let’s just say he was a bit on the wild side. When our roommate would go away on one of her frequent weekend trips, my sister and I would puppy-sit the monster.
He had a penchant for roaming the neighborhood and during one of his escapes attempts, my future husband caught the little bugger. When future husband returned the escape artist, we sat talking for an hour on the hallway stairs. I don’t know if I believe in love at first site, but I remember that entire hour with him in great detail. Six years later, we both returned from our honeymoon in Central America with a case of Montezuma’s revenge. What's that, you ask? Let’s just say that we spent a lot of time in the bathroom. New husband quickly recovered. For me, it took 12 long years.
There I was, newly married to the love of my life and diagnosed with Crohn’s disease. The disease hit mostly in my lower colon and rectum causing a sense of urgency and frequent trips to the bathroom. I went often. I had to run. And it sucked.
This will sound familiar to anyone who has suffered from bowel disease: I staked out the bathroom wherever I went. Always sat on the outside of an aisle. Dreaded car rides without quick access to a toilet. Missed more vacations, parties and other events than I can even count. And, yes, there were plenty of times I didn’t make it to the bathroom. Worse than any of that, by far, was the fact that nothing but Prednisone would put me in remission, and it made me CRAZY. CRAZY, in all caps, CRAZY.
I couldn’t sleep. I would compulsively clean my house. I would get angry at the slightest thing. I couldn’t stand being touched. I ate and ate and ate. My face was moon-shaped. I felt like a fat cow. My thoughts were always five steps ahead of the present moment. In a nutshell, taking Prednisone was like having waaay too much caffeine, being hung-over and suffering PMS all at the same time. (Women who have ever had too much to drink, you can relate!) It was way worse than any of the symptoms I had from Crohn’s, so I wouldn’t take Prednisone until I had to take Prednisone.
At one point, I decided to see if my symptoms would level out since I figured spending hours a day in the bathroom was preferable to being a crazed maniac. That little experiment cost me a week in the hospital and intravenous Prednisone. Not a pretty site! The poor woman in the room with me during that week was awake but couldn’t move or talk. I still feel bad thinking about her laying there enduring endless hours of me hyper yapping on the phone and doing things like calling the same florist three times to complain that the flowers they sent from my Dad were unacceptable. I even made them bring back three different bouquets. That’s how CRAZY I was.
One time, two young Mormon boys had the audacity to ring my doorbell right after my colicky baby went down for his nap. Do you know what I yelled at them while strung out on steroids? I opened the door and yelled, “I’m a Christian G__ dammit” and slammed the door in their faces. Yes, I realize the irony of that statement. I can’t even say that phrase in a normal state, let alone scream it at some young Mormon boys. That’s how CRAZY I was.
Another time, while driving home from my gastroenterologist appointment, I had to pass the Planned Parenthood clinic that always had protesters. I don’t mind protesters. What I do mind is when they have an 8’x8’ picture of an aborted fetus for my 3-year-old son to see. I was so furious he had to look at it, that I pulled the car over and screamed at the lone woman protesting. “Do you think God wants you showing that picture to children? God is love and that poster is not love. I don’t care of you protest, but don’t tell me you are doing it in God’s name when you are forcing my child to see your heinous pictures!” I did this all while my 3-year-old looked on wide-eyed and innocent. Not one of my shining moments as a mom. . . That’s how freaking CRAZY I was.
These incidents and more, from which I will spare your innocent ears, led me to start contemplating ostomy surgery. Not so surprisingly, my gastroenterologist wasn’t the one pushing it. Prednisone put me in remission, so why would I contemplate an ileostomy? This is why: I wanted a better life for my kids, for my husband and for me. I sought out 2nd opinions and did a lot of research on my own. Thank goodness I did.
Life with an ostomy is great. Other than a trip to the emergency room for a blockage after scarfing jumbo shrimp cocktail, I have been fortunate not to have any major complications (shrimp was NOT on my list of no-no food. Beware, fellow ileostomates! shrimp and lobster are hard to digest). Yes, it stinks that I can’t wear a bikini, but I never wore one anyway. Yes, I get nervous that someone will feel my pouch if they hug me too close, but I never felt like being hugged when I was Prednisone. Yes, I have to manage the pouch to feel comfortable when getting frisky with my husband, but at least I feel well enough to even consider getting frisky!
So yes, there are inconveniences. But anytime I feel the least bit sorry for myself, I always remember that the alternative is worse. It’s perspective, baby. And although one day I may have the perspective about being open with the world about my lifestyle, right now I am content. I don’t want to worry about people seeing me as the person who has an ostomy. I just want them to see me—healthy and happy and blessed in more ways than I can begin to explain. My hope for my fellow ostomates, whether you are out of the ostomy closet or firmly in its depths, is that you have the right perspective so you can enjoy the life you have.