My Story

I began to write this blog as I approached my one year anniversary.  On March 20, 2008, I underwent permanent ileostomy surgery to remove my entire colon and rectum.  I was almost thirty-one years old, and I had been ill with Crohn’s disease for eleven years.  I had tried nearly every western medication and treatment, and many alternative treatments and lifestyle changes in an attempt to control this disease, but in my best days I was just getting by.

Turning thirty was a big psychological event for me.  I had watched my twenties go by, and for the first time I understood and resigned myself to the fact that I wasn’t going to get better.  I was only going to get worse.   I realized that my thirties would be over in a heartbeat, that I could easily spend another ten years of my life slowly dying.  “What you need to be scared of,” my doctor told me, “is not necessarily the surgery.  You need to be scared of this.”  By “this” he meant the illness itself, which was draining my lifeforce, and could at any moment trigger an event – a rupture in my colon, for example – that could be fatal.  By “this” he also meant my long-term reliance on medications that had side effects including tumors and death.

I had been so sick for so long that I no longer remembered what it was like to be healthy.  Sure, I had intellectual notions of what my life had been like prior to disease.  But we human beings are such adaptable creatures.  I had adapted to being.  I could no longer become.  Over the years I had crossed off nearly every life goal on my mental list.  My goals were short-term: today I will get groceries, today I will make dinner, today I will brush my teeth in the morning and at night.  I would not go back to school or pursue a career, I would not have children, I would no longer do martial arts, I would not travel around the world anymore.   I counted myself lucky: at least my disease was in the colon instead of in the small intestine, as is true for 70% of people with Crohn’s (resulting in greater difficulty absorbing nutrients).  At least I had a loving, devoted husband who had stuck by me through it all.  At least I had worked out a relationship with my former employer that allowed me to work some hours each week from home (and often from bed) so that I could make some money and maintain my software development skills.  At least I had health insurance.  At least Crohn’s disease wasn’t fatal in the strict sense.

My doctors had urged me to have surgery in 2004, following a two-week stay at the hospital and a month of complete bowel rest (I consumed all liquids and nutrients through an IV).  But I wasn’t ready.  If I had done it then, it would have been a tragic event for me, a sentence to a terrible life.  But in 2008, this was no longer true.   I was largely homebound and bedridden, I was incontinent, lethargic and on pain meds for chronic pain, I was thirty and felt that I had nothing to show for it, and suddenly I knew that I had nothing to lose.  What if it was true that once I had this surgery I would be well again?  My doctors told me that I had a 90% chance of being disease-free and medicine-free.  I couldn’t imagine how this could be true, but for the first time the prospect of living with a pouch seemed like nothing if in fact it meant the end of this disease.  I didn’t agonize over the decision.  For years I was unwilling to have surgery.  Then one day I wanted it.  I was ready.  In fact, if they had been able to schedule the surgery the following day, I would have done it.  I no longer needed to analyze the pros and cons, the risks and potential rewards.  I didn’t need to get feedback from my family and friends (although I did).  IT. WAS. TIME.

So on March 20, feeling about as terrible as one can feel (those of you who’ve been through it know what this morning is like), I woke up very early and I had that surreal feeling one gets when you know that whatever happens this day, it is going to be a momentous, memorable event in your personal history.  My mother took me to the hospital.  She was waxing emotional, tearfully telling me how much she loved me.  I found that I could not return the emotion.  “Mom, I love you.  But please understand that I’m in a different place right now.  I can’t cry, I don’t have words to express anything.  I’m not feeling very lovey-dovey.”  It was a crossing over to the other side, as if you’ve already cut the strings of attachment that bind you to all that you love and know.  You have opened yourself up in a conscious way to the possibility of death.  It’s different than getting in a car, even if that presents a much greater likelihood of death.  Your fear is deep, but it is calm, like a small lake in the pre-dawn quiet.  My mom and dad, long divorced, were sitting in the room together for the first time since my wedding ten years before, and this vaguely reinforced the fact that this day was significant.  My husband kissed me with that urgency reserved for parting at the airport.

First the separation from the family.  Then the changing of the clothes, then the IV, then the drugs.  As people fiddled around me, hooking me up to things, checking my tags, consulting clipboards, I felt the panic I’d expected to feel long before.  Oh, maybe I’ve been hasty.  Have I really thought this through?  It’s not too late, I can change my mind now.  I could reschedule this. I was just making my mind up to tell them that I’d changed my mind when the drugs knocked me out.  And when I awoke, it was a terrible feeling to realize that the thing had been done.  It could not be undone.  It was final.  It was permanent.

I’m laying here, and my dad and my husband are looking down at me.  And I hurt.  People are fiddling around.  I can hear myself moaning.  That’s my voice telling them that it hurts.  Why is it hurting? It wasn’t supposed to.  It was supposed to be numb.  I hear somebody say they didn’t get the epidural right; the right half of me is numb, only the left side hurts.  They’re pumping painkillers into me.  Back out.

I spent five days in the hospital, each day better than before.  My mom said that my face had color for the first time in years.  She said I looked as if someone had removed a poison from me.  My colon was the poison and, incidentally, was twice the size of a typical colon for the size of my body.  Then I was able to return home.  My new me.

If you have read this far, you must be wondering how it all worked out.  This is perhaps more difficult to convey than all of the pain that came before.  It has been wonderful!  It has been great!  It has been fantastic!  These words sound flat to me.  Here’s the thing: you don’t know that you’ve forgotten what it’s like to be healthy again until you are healthy again.  That’s when you realize how much you’ve been missing.  That’s when you realize that your intellectual analysis of what sick life is does not mean that you remember health.  When you’re sick you might say, now that I’m sick I sleep twelve hours a day and sometimes I still need a nap.  I go to the bathroom at least once an hour, and each event takes a lot out of me.  I find it difficult to leave the house, and I’m feverish.  I feel pain.  These things weren’t true when I was healthy.  But once these things are no longer true, it’s like seeing a brand new color you didn’t know existed.  Here’s the truth: Being healthy after having been chronically sick is entirely unique and different from being healthy before you were sick.  Every day is a good day.  If you’ve experienced chronic illness, you understand the significance of this sentence.  Eventually you can make mental room for normal variations on this.  Sure, everybody has a bad day now and then.  But every day is a good day.  I can sleep seven or eight hours at night, wake up refreshed, and approach each day as an opportunity.  What will I do today?  Because I can do whatever I want.  Everything is possible.  I can become again.

I am disease-free and medicine-free.  Within a month of surgery I was doing yoga everyday.  Starting two to three months after surgery I began practicing kung fu and tai chi, attending rigorous classes five to six days a week.  My husband and I did a camping road trip out west – we hiked in Great Basin National Park and camped in Yosemite. We camped back-country for a weekend on the Channel Islands.  We visited Bryce Canyon, and drove through southern Utah.  We went to Canyon de Chelly and did a horseback tour.  We visited Mesa Verde and Black Canyon of the Gunnison.   Back home in Colorado, we go hiking and for the first time I am strong enough to make it to the end of the trail and to go snowshoeing in the winter.  One and a half years out from surgery, I traveled to China and Tibet, proving to myself that world travel is possible again. I have my life back, and I don’t want to miss a minute of it.

Sometimes nurses refer people to me just to talk.  Maybe they are people who are thinking about having surgery, or they just had surgery, and they want someone they can talk with and ask questions to.  I have decided to start this blog because I recognize that life with an ostomy is a unique experience, and I would like to share my experience of it in the hopes that in some small way I might be able to help others in similar circumstances.   Having an ostomy isn’t perfect, but it is manageable.  And for me, having a life that I can embrace and live outweighs the negative aspects of having an ostomy for the rest of my life.  I have no regrets. I hope that others who choose to have this surgery will have the same positive experience of it that I have had.

Postscript: In the Fall of 2010, I will begin a PhD program at the University of California – San Diego.  I could never have gone to grad school when I was sick; I had given up on the idea of pursuing a career.  Now, as an ostomate, I can do this.  I can’t wait.