Patient Story: Improved Quality of Life

Jan 8, 2019 | Candy-CWOCN RN | @candywocrn

Jeff

written by J. Stanhill

My Ostomy Improved My Quality of Life

My story goes back to 1974. I had just graduated from culinary school in Los Angeles. I was having digestive issues, and on the advise of my parents, went to see a gastroenterologist. I was diagnosed with ulcerative colitis. A year later, after many prescriptions, the diagnosis came in with Crohn's disease. At that time not much was known about Crohn's, only to treat it with diet and medication. At one time I was taking thirteen pills three times a day. The worst of it was prednisone. 50 MG a day. For those that have been on it, you know what it does to you. Not pleasant!.

For three years, I saw my doctor monthly and stayed on the meds as I was told. I stayed on the diet (no fresh fruit or fresh veggies, no milk as they thought I was lactose intolerant. I was a regular at the local hospital. At least once every two months from bad cramping and spasms. Demerol was the only thing that would ease the pain.

Finally in April of 1978, I went in for a colectomy. In those days, the surgery took 7-8 hours and left me with a twelve inch scar from below my chest to my groin. A year later the Crohn's reappeared. The rest of my large intestine was removed and an ileostomy was put in place. Fortunately I have not taken any medication for Crohn's since then.

During my illness I was blessed to have met my beautiful wife. We actually met before my first surgery. I must tell you that there is no way I could have made it without her. She was my rock then and is still today. This August we will celebrate our 40th wedding anniversary. We have also been blessed with two beautiful children and now two amazing and loving grandkids.

Fast forward 35 years. I had a few visits to the hospital due to adhesions, but managed to only be in for a few days each time.

I have been dealing with bowel obstructions and a Stomal hernia for the past four plus years. Twice the hernia has been repaired. Since the obstructions started, I have had to remove items from my diet. The doctors at Mayo have been amazing. And I can't say enough about the nurses and the quality of care that I have received each time I had to be admitted. They are the BEST! Each time, my wife would stay with me. It is so important to have an advocate with you while you are a patient.

During my recent visit, one of my nurses was Teddy. He also has an ileostomy. He shared with me about a support group that was being formed at Mayo for Ostomy patients. I was very excited to hear this and told him that I wanted to be part of it. To say the least, I look forward to helping other Ostomy patients with their issues and just being there to listen to what they have to say.

I am currently a culinary arts teacher the Peoria Unified School District.

Thank you for letting me share my story.

Meet other people talking about living with an ostomy on Mayo Clinic Connect. Join the conversation, share experiences, ask questions, and discover your support network...

 

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