Living with My Mothers Crohn’s Disease

Crohn’s disease is a form of inflammation of the bowls disease, typically affecting the intestinal track. While they have come a long ways in understanding and treating Crohn’s disease now, my mother was not so lucky when she discovered she had this illness in 1969. In the 1960’s very little was known about it and they certainly did not know how to treat it, my mother was a guinea pig.

This is my story of growing up with a loved one diagnosed with Crohn’s disease, and those who lived with her and loved her so deeply. I was born in 1968 and since she was diagnosed in 1969, I really have no memory of a healthy mother. While I do remember a few good days or spells, my memories are clouded with the pain she endured. I have many memories of my mother crying on the couch, on the worse days she would close herself in her bedroom, but we all knew she was in there crying, unable to bear the pain.

My petite mother of only 4 foot 9 inches tall and weighing on average of 70 pounds spent some time going in and out of hospitals. She was literally starving to death as her Crohn’s disease inflamed her intestinal track and her body could not absorb the nutrients we typically receive from the foods we eat. Her body would immediately pass the food through her system in diarrhea. Her abdominal cramps and pain would get severe, curling herself up into a ball. Each time she went into the hospital the cut out more of her small intestinal track, hoping they got it all, but never did. Always she would be back in the hospital at some point.

She was already a survivor of polio, her stories of how my grandmother stood in line with her for hours as a long line of people waited in panic to find out if they had polio, still rings in my ears. She was in a full length body cast for a whole year during her time with polio as a young girl just hitting puberty. The stories were vivid and with detail of her time with polio, one child of 10 that my grandmother had had. We knew she was a fighter, but still, her tiny size alone, made her look so fragile, and many times we wondered how long she would be with us.

I really do not remember how many surgeries she had to endure; to me it seemed way too many to count. There were also some mistakes made in surgery along the way since they did not know what they were doing. Sometimes it was a simple overlooking of her little size where they would give her too much anesthesia, sometimes it was the actual surgery itself, and one in particular that was a big mistake. Each time she went in, we wondered if she would make it.

Sometimes my Dad, would go to see her by himself after he got out of work, I remember he came home crying sometimes, on a couple occasions he did bear the news that the doctors did not think she would survive this time around. This news would keep me up crying well into the night. Going to visit her in the hospital was just as scary and heart wrenching. She was so pale, tubes going down her throat, in her arms, everywhere they could stick tubes it seemed. Some where feeding tubes trying to keep her from starving to death, some carried pain meds to her system such as morphine, making her a little more than out of it. So many tubes hooked up to her, she looked so tiny and small in that hospital bed where the tubes seemed to engulf her. My Dad always tried to prepare us before hand but nobody could prepare for the reality of what she actually looked like in that hospital bed. It was shocking to say the least.

When she was home, it was strict bland diets and sometimes she had to even live off of baby food from jars and milk soaked bread. So many foods seemed to aggravate her intestines, when she did eat normal foods; we learned to cook without spices to keep it bland for her. Always she took an array of medications, as teenagers we prepared these medications for her to make sure she took them on time as over the years, certain medications she had been given seemed to dull and confuse her mind.

On her good days she always tried to do something special with me such as fishing or taking me down to our woods to sit and talk about nature or playing a game with me. I will never forget these days and hold on to them with the fondest of memories as they did not happen often. I really do not know how she endured so many years of agony and pain, it was a least 12 years in and out of pain and inflammations of her intestines. Too many years for one person to bear is all I know.

My mother was a trooper though, one of the strongest woman I know which admittedly she gets from her own mother who got it from her mother! Every time the doctors did not think she would make it she proved them wrong and came home to us. We all questioned if she would live long enough to see us graduate high school, we had serious doubts yet we prayed she would. We hoped she may even make it long enough to see a grandchild yet knew she would never live long enough to see great grandchildren.

When I was 12 however her Crohn’s finally seemed to quit spreading after they had cut in the end, all but a foot of her small intestines out. For many years it was considered mostly in remission. She has defied everything we thought we knew. She not only lived to see her children all graduate high school. She has lived far beyond what anyone thought and has seen her 9 grandchildren, some who have graduated high school themselves. She has also lived long enough to see 2 great grandchildren!

While her Crohn’s disease has seemed to become active again she is the epitome of the bravest strongest woman I know. A brave woman of courage who just turned 69 years old and will see the age of 70 come next year. Nobody including herself thought she would make it this far, yet all of us are sure glad she has! She is a survivor, a fighter that while she may come in a very small package, and she is larger than life with the courage she has shown. Our wish now is that when it is her time to leave us, that she can do it without pain and in peace, she deserves that much as most war heroes would never be able to endure the pain this tiny woman of 70 pounds had to endure throughout my childhood.

We are so blessed to have her with us still, therefore I believe in miracles.


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