Don’t be afraid to ask questions—this is all new for you. Lean on your care team for help and don’t get discouraged if you are having trouble retaining what you are learning or if you experience some minor complications along the journey. Recovery is never a straight line, and we will be with you every step of your journey. Like any skill, mastering changing your pouch will come with practice and repetition. Focus on getting through the day. You can do this! Try to be patient and kind to your nurses. They are incredibly valuable to your recovery even though they will ask you to do some things that might be painful at first. They know what will help you recover quicker and are committed to helping you with all their experience and training.
I’m very excited to introduce you today to my friend, Jonathan Negretti, who ran seven marathons on seven continents in seven consecutive days…WITH AN OSTOMY! You don’t need to think about anything nearly that ambitious right now – just try to do a little more than you did yesterday. And if you are still a bit hesitant about looking at your stoma, I want you to know that’s completely normal. You might enjoy hearing the reaction of a very tough guy when he saw his stoma for the first time when he was in the hospital. You are not alone!
Former NFL Kicker
Former NFL Kicker, Walter Payton Man of the Year, Grateful Ostomy Patient
Shock and Shuffle
Even a guy as tough as Jonathan Negretti who ran 7 marathons in 7 consecutive days on 7 different continents with an ostomy battled discouragement when he saw his stoma for the first time.
Seeing Stoma for the First Time – Jonathan Negretti
Jonathan Negretti Story
Walk to the Nurses Station and More – Jonathan Negretti
Roadmap to Recovery
Take a few more steps today than you did yesterday.
Turn off your phone and don’t feel like you need to respond to every text message or voicemail. Tips on sleeping better after surgery.
It’s important for you to support and protect your abdominal area as you recover. Watch this video to learn how to brace yourself if you have to cough or sneeze.
Drink eight (8 Oz) glasses of various fluids daily. This helps prevent a urinary tract infection and decrease urinary odor.
Potential Complications
May be preventable if you recognize the warning signs early and take the appropriate action
1. Skin problems. Peristomal skin is the skin surrounding your stoma and should look and feel just like the skin on the rest of your abdomen (not irritated or red). Learn more about how to care for your peristomal skin and catch any problems early so they can be addressed.
2. Hernia. This happens when an organ or other tissue pushes through your abdominal muscles and creates a bulge. Since having ostomy surgery increases your risk of developing a hernia, you will want to follow these guidelines:
• Limit your lifting to 5-10 lbs. for the first 4-6 weeks post-surgery (or as directed by your surgeon) and always use proper lifting technique.
• Support the area around your stoma if you sneeze, cough, or laugh by squeezing a folded blanket or pillow.
Learn more about hernias and how to protect yourself here.
Hear Nurse Melody talk about hernias and how to prevent them here.
3. Urinary Tract Infection (UTI). About 25% of patients with a urostomy have a urinary tract infection (UTI) each year. The symptoms usually are fever, pain, and strong-selling urine. Diabetes increases the risk of a UTI.
• Drink at least 8 glasses of fluids each day.
• Eat food and drink fluids that inhibit the growth of bacteria. Examples include cranberry juice, blueberries, peppers, cherries, tomatoes, and sweet potatoes.
CALL YOUR HEALTH CARE PROVIDER IMMEDIATELY IF YOU THINK YOU HAVE A UTI
4. Dehydration. Dehydration is a common reason why patients with a urostomy return to the hospital. Dehydration occurs when your body loses more fluid than it takes in.
Signs of dehydration:
• Being thirsty
• A dry mouth
• Decreased urine output
• Dizziness when standing up
• Muscle or abdominal cramps
5. Diarrhea. is common because part of your intestine was removed and re-routed to make the urinary diversion. This can affect the absorption of fluids from your intestine, resulting in watery stools. Vomiting and nausea are also common in the first few weeks following a urostomy. Patients often report having a loss of appetite and experience weight loss.
6. Nausea/Vomiting . following a urostomy, patients sometimes report weight loss, tasting food differently and feeling nausea or full soon after eating. It is not unusual to lose 15-20 pounds after surgery.
Learn more about hydration from our dietitian, Danielle.
7. Problem Solving. You may encounter problems like skin irritation, leaks, no output and others. Click here for more details.
8. Medical Emergencies.Review this list so you will know when to call your surgeon/nurse or go to the nearest emergency room.
Embracing Ostomy Life Goals
Goals for Today
• Become an active participant in your first pouch change, ideally with your ostomy nurse (WOCN) helping to guide you. The more hands-on practice you have, the more confident you will feel when you head home. Learn how to empty and change your pouch here.
• Everyone feels anxiety about being on their own after leaving the hospital. You’ve got this!! Review these important reminders to make sure you have set yourself up for success.
Ostomy Terms you Want to Know
Peristomal Skin
Peristomal skin is the skin around your stoma and should look just like the rest of the skin on your abdomen. Keeping your peristomal skin healthy is really important in adjusting to your new appliance. Healthy skin will allow your pouch to adhere to your abdomen properly, help prevent leaks, and will affect your confidence and your comfort. Click here for a helpful guide to assess your peristomal skin.
If you haven’t already, you will soon be taught how to manage your urostomy, including draining and changing your pouch. All of this starts with the first look at your new body. Take your time and consider having a parent or spouse or good friend with you the first few times you change your pouch. You may feel shock, regret, anger, fear, sadness, uncertainty, or loneliness. Or you may feel relief, happiness, excitement, freedom, or a renewed sense of hope. More likely, you will feel a combination of some or all of these feelings. It is important to remember that feelings are temporary, change frequently, and are not facts. Whatever you feel during your first look is just that…and it will change over time. You might want to journal about your feelings or talk to someone about what you are feeling.
How helpful was today’s message for your recovery?
We offer our sincerest thanks to Joan Scott — a kind ostomate and brilliant writer — for allowing us to include excerpts of, her book, “The Ostomy Raft”, in Alive & Kicking. To purchase a copy filled with tons of practical tips for living with an ileostomy or colostomy, click the button below.
Rolf Benirschke is a former NFL Man of the Year and All-Pro placekicker who played 10 seasons in the NFL for the San Diego Chargers. His career was briefly interrupted when he was diagnosed with Crohn’s Disease that required ileostomy surgery in his third season. Remarkably, Rolf returned to play seven more years with the Chargers, becoming the first ever professional athlete to play with an ostomy appliance. He has been an outspoken champion of the ostomy community for the past 40 years and created Embracing Ostomy Life™ to provide the hope, education and encouragement to ensure that no one goes through ostomy surgery alone.
Join Team HOPE
Do you wish you could connect with someone like you who has an ostomy and similar life goals? You can! Our Team HOPE (Helping Ostomates through Peer Encouragement) program can pair you with a volunteer who has an ostomy that will listen, empathize and suggest resources to help you along your journey.
