After living with Crohn’s disease for more than 40 years, Lori Plung, an inflammatory bowel disease (IBD) patient advocate, is dedicated to spreading awareness and education about IBD throughout the community. Lori also leads the Crohn & Colitis Foundation support group at UPMC where she connects with and supports patients with Crohn’s disease and ulcerative colitis.
After being diagnosed with Crohn’s disease at the age of 16, Lori underwent her first major surgery in 1988 — a total proctocolectomy with a permanent ileostomy. Since then, she has undergone four more surgeries that consisted of resections, multiple strictureplasty procedures, and four stoma revisions.
An ostomy is a surgically created opening that connects a part of your intestines to a small pouch worn outside your belly that allows urine or stool to exit the body. The stoma is the actual opening in the abdomen where bodily waste is discharged into a disposable pouch. So, it’s important to keep the area around your stoma clean and free of unwanted bacteria to reduce the risk of infection.
Join Lori as she shares her insights for patients with ostomies and tips for what you should be aware of before and after surgery.
1. You will be the same person after surgery.
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People often think that after surgery, they lose the freedom to live their lives. I think it’s quite the opposite. In many cases, your ostomy is giving you the ability to live your life — and maybe even better than before. I often tell patients that undergoing surgery can give them a new lease on life and their stoma will become just another part of their body.
2. You can get back to physical activities and a regular diet once you fully recover.
The biggest misconception among ostomy patients after surgery is that your quality of life changes. I have found that having an ostomy isn’t meant to inconvenience day-to-day life. Instead, it’s meant to get you back to the healthiest person you can be and to ultimately improve your quality of life.
Once you have fully recovered from surgery, you should be able to eat most foods, return to favorite activities, and wear your favorite clothing. It might take several weeks or maybe months until you feel back to yourself, but keep in mind that your surgical team will guide you every step of the way. Here are a few things to keep in mind:
- Chew your food well to ease digestion.
- Stay hydrated while doing favorite activities.
- Wear clothing that feels most comfortable (whatever you wore before ostomy surgery, you can certainly wear after surgery).
3. You are in control of how much information you share.
Whether you choose to tell others about your ostomy is completely up to you. Remember, your ostomy is very discreet, it sits under your clothing and cannot be seen.
Some people are open about their surgery from day one and share their journey every step of the way while others are a bit more private. There is no right or wrong — this is your journey, and you decide what’s best for you.
It’s also not a decision that has to be made right away. Whatever makes you feel the most comfortable should be your goal. And whatever path you choose, you have options and are in control of how much information you share.
4. Use educational tools to become more familiar with ostomies.
Organizations such as the United Ostomy Association of America (UOAA) and the Crohn’s & Colitis Foundation are a wealth of information. The UOAA website is dedicated to all who live with and are touched by those living with any type of ostomy. It is a wonderful resource that provides a tremendous amount of support and education.
You can also talk to your ostomy nurse about any questions you may have. When I received my ostomy at age 24, I reached out to people to guide me through the process. Your care team is a terrific source of knowledge, and you should not hesitate to ask them any questions about living with an ostomy.
Try to talk with someone who has an ostomy. It’s a wonderful way to gain perspective into life after surgery. Consider joining a support group with people having similar experiences. Talking to people who had ostomies was one of the best tools that I used during my journey.
To find out more about life with an ostomy, visit the FAQ page on the UOAA website.
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About Digestive Disorders
The UPMC Digestive Disorders Center cares for a wide range of gastrointestinal (GI) conditions and diseases, from diagnosis to treatment. Whether your digestive condition is common or complicated, our experts can help. Upon referral from your physician, we coordinate your testing and treatment. If you have a complicated condition, we can refer you to one of UPMC’s digestive health centers of excellence. Find a GI doctor near you.