Living With Crohn’s Disease

 

Living with Crohn’s Disease is very challenging. It affects your social life, also your family and friends.

This is my story, that I wish to share with you. My hope is that other Crohn’s sufferers won’t feel alone with this disease. The hardest part is reaching out for support and seeking help.

The Journey:

I first began with the symptoms at the age of 13. I am in high school, trying to fit in, make friends and keep my grades up. I had experienced some trauma in my life at that time, which I feel brought on the disease.

Fortunately the symptoms were mild and didn’t interfere with my studies and being in the marching band. The symptoms were not serious enough to see a doctor, so I dealt with it.

Jumping forward to the age of 19, I got married and life was good. We were having fun boating, water-skiing and camping. Bought our first home and were content with our jobs. But I was beginning to feel worse, my sick days were adding up and I was searching for answers on how to feel better.

I began to research doctors, got recommendations from friends and co-workers for their doctors and nothing was working. I was sliding downhill fast.

In 1972 we decided to sell our home and move to Oregon. We wanted to get out of California and settle down in a small beach town. The different environment took some adjusting, the weather was always windy, wet and grey.

My symptoms were now worse. I was loosing weight, sick a lot, missing too much work and still trying to get answers from doctors.

I have now been sick for 10 years and no doctor can find the cause. At one point my OB/GYN doctor agrees to do exploratory surgery, because we thought it could be female trouble, due to an unknown mass in my abdomen.

I thought finally, I am going to find out what is wrong with me. When they put me to sleep the mass disappeared, so they chose not to do surgery. That was a very low point for me, still no answers!

So life goes on, I gave birth to a son after a very miserable 9 months and I am still trying to find a doctor. My life is in chaos.

The pregnancy aggravated my unknown disease. I was trying to nurse and take care of our son, work, prepare meals and clean the house. I was down to 80 pounds, not eating and seriously sick all the time.

I was still actively trying to find a doctor to help me and following every lead I was given by friends and family. My marriage was falling apart, because I wasn’t able to keep up with all the chores and we had no social life. I was at the lowest point in my life.

The Diagnosis:

In 1975,  my OB/GYN was concerned about my health and agreed to do exploratory surgery again, but this time I actually had the surgery. Once they opened me up a different surgeon was called in.

My intestines were a mess, part of my colon had to be removed and  part of my small intestines had to be cut out. It was a slow recovery, but finally, I was feeling great. I was diagnosed with regional enteritis, before they named it Crohn’s Disease.

Present Day:

My life has seen numerous changes:

  • Two more surgeries for blockages
  • Divorce
  • 5 years of healing from a 33 year marriage
  • Found my soul mate and remarried
  • Trying different programs  (Remicade) for my Crohn’s
  • Still dealing with abdominal issues

Chronic illnesses alter your life dramatically.  Everything you do revolves around how you feel at that moment.  For me it is the availability of a restroom.  I have left stores with groceries in the cart, because of no restroom.  

There is no magic pill we can take that will cure our symptoms,  just stay strong, stay informed on new therapies being tested and live life to the fullest.

P.S.  If you are looking for up to date information on Crohn’s Disease visit the     Crohn’s and Colitis Foundation

“The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live the present moment wisely and earnestly”  by Buddha