Jane’s Story of Courage

Categories: Success Stories

It was early January, 1988.  I had been feeling fine all day long.  We had dinner at home and went to bed as usual.  In the middle of the night I woke up and thought my insides were exploding.  There is no other way to explain the pain.  It was the most intense pain I had ever experienced.  I laid in bed trying to figure out what was going on.  Finally I woke my husband up and said I needed to go to the hospital.  Something had to be terribly wrong.  At the time we had four young children so I took myself to the local emergency room.  It was about 1 am.  Everyone was wonderful to me in the emergency room.  They did the normal blood tests and finally did an ultrasound.  I had stones in my gall bladder.  The physicians decided they would give me pain med and send me home.  They arranged an appointment with a surgeon in the next few days.  I assume they checked my amylase and lipase but didn’t know enough then to ask.

Ten days later my gall bladder was removed.  My surgeon came to visit me in the hospital the next day.  The anesthesia had worn off by then and the first thing I told him was that the pain I had before the surgery had not gone away.  It was back to the drawing board.  I consider myself very lucky.  I live in the Boston area.  There are many wonderful physicians in this area with several teaching hospitals. It took me six months to find my way to one of these teaching hospitals but as soon as I did I very quickly had a diagnosis: Chronic pancreatitis.  I had pancreas divisum .  Pancreas divisum is a defect in the ducts to the pancreas.  It was suggested I have surgery to repair this defect.  By the end of October, 1988 I was undergoing another major surgery.

Don’t forget that I had four young children at home.  I had twin girls who were 10, a son 7 and a son 5 .  They were and are still my life!  I refused to let my medical condition get in the way of my enjoying them.  I have a very supportive husband.  His mother and father always came to help me and spend time with the children.  I also had a wonderful woman, Joana, who was always there.

The surgery seemed to help for a little while but within six months the pain came back.  My doctor, Dr. Douglas Pleskow, was incredibly supportive.  He would bring my medical information with him to medical meetings, discussing my case with colleagues, hoping to find something that he could do to help.  I did what many patients do or think of doing.  With Dr. Pleskow’s support I went everywhere for second opinions.  One doctor told me once that I had chronic pancreatitis and I needed to just grin and bear it.  At the time I found this comment very disturbing but this doctor was really correct.

I now have had CP for over twenty years.  The most important thing for me was coming to terms with the pain.  I needed to realize that there is no magic pill.  There is nothing that is going to eliminate my pain completely.  There are things I can do to make it more tolerable but it is not going to go away. I am lucky that this seems to work for me.  I still have flares and end up in the hospital but over the years I have still been able to enjoy my children and now my grandchildren.  This may sound crazy but it helps me to know that I have experienced the greatest pain possible. I understand what is causing this pain.  I think the worst thing about pain is the fear of pain.  With the pancreas pain I think I have eliminated that fear.