Decision to Incision

Here I was, the year 2007 and not long until my 21st birthday.  A big decision, life changing, was lying before me.  My Crohn's Disease was unresponsive to medicinal treatments beyond prednisone, and prednisone is no medication to rely on long term if it can be prevented as the long term side effects are serious in themselves: osteoporosis, glaucoma, and high blood pressure to name a few.

What was my decision to make?  My doctor brought up the word surgery.  Ileostomy to be exact.  This surgery would remove my large intestine.  My small intestine would then be brought to my lower abdominal wall to create a new opening where waste (stool) would empty from.  My plumbing would be rerouted.  From that point on, I would need to wear an ostomy appliance on my abdomen to collect the waste.  The ostomy appliance would adhere to my skin by a wafer (which is like a 4x4 bandage with a quarter size hole in the middle).  A collection bag attached to the wafer.  This would need to be worn almost all of the time minus the time it would take to remove the old one and put on a clean one which typically would need to be done once or twice a week.  Once my large intestine was gone, there would be no putting it back in or getting a transplant.  What's done is done.  Although some people have the option of a reversal if there is still a rectal muscle there, so I still had that, but my colon would be forever gone.

We met with my surgeon who impressed upon me a great knowledge of my illness and the ileostomy procedure.  He was much like my gastroenterologist in that he took time with his patients to discuss the matter at hand and to give all of the information that patient needed about their procedure.  He answered all the questions we had.  I had a notebook with all of the questions my parents and I had come up with.  And I would recommend doing this regardless of the illness you have and the procedure you're facing because you get in the office and nerves take over and your brain ceases to function properly.  Also, bring a pen and take notes, or better yet, bring another person to take notes and be that extra set of ears.  The doctor took notice of my notebook and kept asking what the next question was.  All of the listed questions were answered with sincerity.

This matter of surgery wasn't to be taken lightly.  And it definitely wasn't our desire to take the issue into our own hands or leave it in the hands of doctors regardless of their knowledge.  We took it to God.  And after meeting with the surgeon, there was such a peace about me having surgery.  Peace.  Yes, that is the perfect word for what we felt.

The next phase was to get my stomach marked for the surgery.  They needed to mark where the doctor would need to make the incision for my stoma (the opeing formed for my small intestine to be brought to the outside of my abdomen).  That made this whole situation more real.  And me a little nervous.  They wanted to be sure the stoma wouldn't be in an awkward place in relation to my body shape, where my waist is, where I bend, that sort of thing.  They wanted it in the best place for me.

I've wondered at times what people thought of me even considering this move.  I guess to most people, it seems like it could be a voluntary decision in that I was still functioning after all.  And maybe the illness wasn't viewed as serious to a lot of people looking in from the outside.  We did get some well meaning advice from others and some of it we tried to incorporate which only made me feel worse and send my illness into overdrive.  And then I didn't look sick.  Crohn's disease is essentially an invisible illness for me.  That's how I felt sometimes.  If someone didn't know I had it, then they wouldn't know I was struggling with something.  So why would someone say okay to letting a doctor remove a body part that requires you to wear a bag on your side that holds stool?  It's gross, it makes you less desirable, it changes everything.  I thought those things for several years.

I fought against the idea thinking I could never possibly have to go through something like that.  But I couldn't keep fighting it.  Because my body couldn't keep fighting it, the Crohn's.  I was fortunate to not be force into the decision.  I'd had years to think about it; lots of ups and downs with my health.  Some people don't get that choice.  It's an emergent decision placed upon doctors.  Then the patient wakes up in a hospital room with this bag on their side wondering what happened.  Wondering why.  Having to take a drastic change in their body and try to make sense of it.  I'm glad I wasn't forced into that.  The decision was hard enough as it was .  And I realized with this time that I had to think, that wearing an ostomy bag really wasn't that gross.  I wouldn't be any less desirable.  But it could change everything with my health.  It would hopefully give it back to me.