51 years with an ostomy!

First, I want to say that I am in awe of all you young women on the Girls With Guts page and forum who display your tummies with your ostomy.  Such courage and resiliency!

I am 82 years old and have had my ileostomy since 1968 – that is 51 years! – so we are longstanding good friends.  I call her Niagara because she is always flowing! I had Ulcerative Colitis, and with each of my four pregnancies my disease became more severe. During the fifth month of my last pregnancy, I was literally bleeding to death and ended up needing an emergency ileostomy.  I was in the ICU when the doctor told me about my surgery.  I had never heard of an ostomy so the whole experience was scary and confusing.  There were no enterostomal therapists at that time and the medical staff knew very little about dealing with an ostomy.  I went home after six weeks in the hospital with a big heavy rubber bag attached to my stomach with glue.  I was basically left on my own to figure out how to handle this completely foreign situation. Let’s not forget that I didn’t have the internet to help me! Fortunately I am an intelligent, creative, and resilient woman and managed to work with the few options that I could find.

Four months later I am in the recovery room after the birth of my fourth child.  Those days, birthing was done in a paternalistic unnatural manner.  The head nurse gathered the recovery room nurses around my bed and asked, “Who would be willing to empty the bag for this patient?” No one replied except for a brave nursing student who offered to help me.  That should give you some idea of how the medical staff perceived ostomies in those days.

One of the things that helped me adjust to my new life was humor, especially the laughter of my children.  When I told my seven year old about my surgery she exclaimed “But Mommy, then your tushy is just a decoration!” When I showered with my four year old she brightly stated “Mommy, you have the most decorated body!”

Over time I got stronger, both physically and emotionally, and of course the available care and products improved.  Eventually, I started an ostomy support group at our local hospital that I led for many years.  I was asked by gastroenterologists to speak with patients who were contemplating ostomy surgery, and visited with many of them before and after surgery.  Helping others was a way of helping me.

Now, I live in an independent retirement home and am very happy.  I swim daily in the pool and use the fitness equipment.  In my younger years I roller-bladed and cross country skied, but osteoporosis keeps me from those extreme sports now.  I have always had careers in psychology and education, and currently volunteer as a Court Appointed Special Advocate (CASA) for children in state custody.  I have a passion for travel and have visited 47 countries.  My favorite trips are with my grandchildren and I took all six of them to Belize to celebrate my 80th birthday.  We had a blast snorkeling, caving, zip lining, tubing, horseback riding, and hiking.

I hope you can see from my story that it is possible to have a rich and happy life with an ostomy.  I definitely prefer it to the years of suffering with Ulcerative Colitis.  At the time of my surgery, I was too sick to be given a choice, but if I had the choice I would have definitely chosen to be who I am with Niagara on my side.  Best of luck to you all with your journeys!