From the time I was in high school, I had what was called a nervous stomach. Going on a date was stressful, because I never knew when that nervous stomach would begin to cramp and have me urgently seek the nearest bathroom. Going on a class trip was out of the question.
Things calmed down when I reached adulthood, but in 2003, I was diagnosed with ulcerative colitis. I was told it was a moderate case, but I suffered flare-ups for years. I never really felt good, and if this was moderate, I shuddered to think what severe was like.
Six years ago, on a hot July day, I found out. I went to the ER thinking I was severely dehydrated and needed an IV. Instead I was admitted to the hospital, and my large intestine was removed. I came home with an ostomy, and it gave me my life back. You might have never heard the word “ostomy.” Most people haven’t. But there are nearly a million people in the United States who live with one.
The three most common types of ostomy are:
- urostomy – caused by bladder cancer or malfunction of the bladder
- colostomy – caused by cancer of the bowel and diverticulitis
- ileostomy – caused by ulcerative colitis and Crohn’s disease
In all three cases, there is a surgically created opening on the abdomen called a stoma. Urostomies allow urine to leave the body through the stoma after the bladder has been removed. Colostomies and ileostomies allow stool to bypass a damaged or removed colon. A specially fitted pouch is worn to collect urine or stool.
When I was faced with the sudden removal of my large intestine, I thought about a friend who had the same surgery a year before me. He recovered to live a full life and said he wished that he hadn’t waited so long. As the doctors tried to calm my severely ulcerated colon, they offered suggestions for treatment. But they seemed to me to be stopgap measures, and I made the decision to go ahead with the surgery. I didn’t realize it at the time, but it was one of the best decisions I’ve ever made.
You have probably met people with ostomies and never knew it.
We wear normal clothing, eat and drink as you do, and generally live our lives without any restraints that were not there before. Of course, there is a period where we get used to having and managing our ostomies.
The physical part of that process begins in the hospital where a WOC (Wound, Ostomy, and Continence) Nurse shows you how to change your pouch. In the beginning, the learning curve was steep, and there were days I thought I’d never get used to it. But I learned to set small goals, and gradually I realized the only boundaries I had were self-imposed.
One of the best things I did was to talk to other ostomates.
Only someone who has been in your shoes can truly know what you are experiencing. If you know someone who is facing this type of surgery, or will be a caregiver, there are many ways to get information to help smooth the road ahead.
Thanks to the internet and social media, you have only to type in the word “ostomy” to get more information than you are ready to deal with. If you’re like me, this can be overwhelming. An excellent and trustworthy place to begin is the Ostomy Support Group of Tucson Arizona. Meetings are open to everyone, whether you are a member or not. The group has people available to talk one-on-one about living with an ostomy. We do not offer medical advice, but we share our experiences and answer questions. If you know someone who is interested in learning more about this group, call 520-206-0268 or visit the website www.tucsonostomysupportgroup.org.
I’m still the person I was before surgery, only better. And because I’m better physically, I’m better mentally. I can do all the things I did before, eat out (and eat pretty much what I want), travel, go to the theater, and so on. But now I do all those things without worrying about how I will feel or where the nearest bathroom is.
Guest contributor
Suzan Austin
Ileostomy, 2018
