You have survived the very difficult dog days of your recovery – Way to go! I still remember vividly, both the physical and emotional challenges during those days, and that there were times I did not feel like I would make it through. Your two toughest weeks are behind you. By now, your pain should have decreased significantly, and hopefully, you are starting to understand how to manage the mechanics of your pouch. The good habits you have been practicing, like taking care of your peristomal skin and staying hydrated, will continue to be important as you recover. Stay vigilant!
You are likely at a point where you are beginning to face reality and wonder what the rest of your life will be like. If you are like me, you might even be crossing off some of the activities you used to enjoy the most — thinking you will never ever be able to do them again.
Battling your fears is tough! Based on my experience and my conversations with thousands of ostomates, there are two things that can be of great help to you moving forward:
1. Your mindset is EVERYTHING! You need to make a conscious decision to choose “better” and not “bitter” every single day. We all have days where we get lured back to bitter. Don’t beat yourself up when that happens. Remember, you are allowed to VISIT the “poor me” house – you just aren’t allowed to move in!
2. Read and listen to the stories of those who have gone before you. Learn what their fears were and how they overcame them. I’m looking forward to sharing more real, authentic stories of people JUST LIKE YOU — people you can trust who will inspire and encourage you that there is a great life ahead of you.
Former NFL Kicker
Former NFL Kicker, Walter Payton Man of the Year, Grateful Ostomy Patient
Biggest Fears
You can only get your life back when you face your fears.
Jonathan shares that you are only limited by what is in your mind.
Ostomates share some of their greatest fears about life with an ostomy
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
• Work toward independence on changing your pouch. Click here to read about how to change your pouch.
• Let me provide some encouragement when you reach that milestone of changing your pouch. → Watch the video.
• Addressing problems with your ostomy early is critically important. Need help? Find a WOC nurse here or here
Ostomy Terms you Want to Know
Output
The average daily urine output for a urostomate typically ranges from about 400 to 2,000 milliliters (mL) per day, similar to the urine output of someone without a urostomy. However, this amount can vary widely depending on several factors, including fluid intake, activity level, climate, dietary factors such as alcohol or caffeine intake, and other health conditions. Maintaining proper hydration is crucial for urostomates to ensure consistent output and minimize complications. If there is a significant increase or decrease in urinary output, it may indicate a potential issue with kidney function, and consulting with a renal specialist and undergoing a 24-hour urine test might be recommended.
Don’t Worry about Tomorrow
Thoughts for Today
• Be kind to yourself. As you speak kindly to yourself and offer yourself compassion, you will notice that you build resilience, respond kindly to yourself more often, and encourage yourself when needed.
• You may not always believe these kind, compassionate statements, but we tell our brains what to believe (don’t believe me?) Try this exercise and see what your brain tells you!
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.
