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YOU Stories

Steve's Story

A Second Chance At Life

My name is Steve, I am 31 years old and I have had a permanent colostomy for about 5 months.

My original problem was Crohn's Disease of the large intestine, which was diagnosed about nine and a half years ago.  This was just to be my first hospitalization due to Crohn's, which was to become one of many.  Like most other sufferers, I lost a lot of weight (about 3 stone) and suffered chronic diarrhoea, vitamin deficiencies and strong spasmodic gastric pain.

I also started taking a lot of medication, especially cortisone.  This would reduce the inflammation and pain I was feeling but also made me feel light headed which affected my work badly.  This went on for several years, fluctuating between periods of remission where I felt and looked normal, to bouts of illness with varying degrees of severity.  When I could not control these flare-ups I went into hospital, these visits occurred about once a year.

I found that the disease was controlling my life to a large degree.  The illness and the medication made me moody at times, I am sure I was pretty unpleasant to be around!  As I was unable to get out and socialize, friendships and relationships also dropped off.  But then I told myself, I was sick, I did not WANT to go out.

Luckily my employer was extremely understanding and I was able to transfer around to different sections, depending on my health at the time.  Eventually, however, the illness became so bad that I had to defer my studies, and take more time off work.  This time the doctors were much more pessimistic, and an operation was predicted.

I panicked and began running around all the doctors, just trying to get a different diagnosis; but they all agreed - a colostomy was my only real option left.  I spent the next two weeks swinging from anger to tears unable to understand why this was happening to me.  I also felt more alone than I ever had in my entire life.  I felt like I was the only person in the world to have this terrible operation.  After years of illness and pain, now I was going to be deformed. I would never have a normal life again.

Eventually though, I accepted it.  The illness, the pain, the medication, the fissures, the fistulas were not going to stop.  So I set a date with my surgeon and then went to see the stomal therapist at Cabrini Hospital.  I could not believe how small the pouches were!  They were not going to intrude at all, not like the giant sacks I expected them to be.  After the operation everything went smoothly apart from a few "teething leaks" and after a few months I was feeling better than I had been in years.  Sports were a possibility again and I went for my first swim in about 3 years.  A month later I rode on a club bicycle ride (although I am not saying how long it took me!) I had forgotten how good it felt to be healthy again.

However, the fistulas still had not healed so I knew I had to have one more operation, the one to make it permanent.  This time there was no fear or anger, and after another smooth recovery period, I felt better than before, thanks again to my surgeon and the staff at Cabrini.

I am now back at work again, doing lots of overtime and enjoying a very full social life.  The decision to commit myself to the second operation meant that I could forget about my health problems and get on with living my life again.  It is something I never thought I would be able to do again and it was definitely worth it.

Reprinted from the "Thoughts of YOU" membership folder.  Most stories were written from the early to mid 1990s.

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