You likely are anxious to get back to being able to take care of yourself and may be feeling frustrated about still needing so much help from your caregiver. Hang in there and be patient! Each day you are getting stronger and moving toward independence. Hopefully, you have settled into a routine at home, and are able to remember and apply the lessons I learned and shared from the POWs that were absolutely the key to my own recovery. (See video below.)
1) Get through today – tomorrow will take care of itself and a week from now is an eternity away. That’s where you are in your journey! Your job right now is to get through the day. Don’t allow your mind to wander – can I play tennis, swim, play with my grandchildren – YES YOU WILL BE ABLE TO! Trust me – you will get there but you aren’t there yet…and need to stay focused on the present.
2) Set some small achievable goals for yourself this week – walk twice as far, sit up in the chair a little longer, change your pouch on your own.
• When your stoma was created during surgery an incision was made into your abdominal muscle which allowed the bowel to be brought up through it to form the stoma. That muscle is now weakened and at risk for a parastomal hernia (bowel protruding through the muscle layer near the stoma.) A parastomal hernia would appear like a bulge or lump under the skin that may protrude further when you cough. A hernia could cause discomfort or make it harder to keep your ostomy pouch intact. Make sure you understand any lifting and exercise restrictions that your doctor and medical team have given you. Consult your medical team before beginning exercises. Watch this video to learn how to decrease your risk for developing a hernia.
• Taking a shower or a bath can be a quick way to make you feel better. We’ve got some helpful tips for you here.
• If you are experiencing any problems with your ostomy, find a WOC nurse who can help you. Find a WOC nurse here or here
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.
It is important to keep an eye on your urine’s pH. Doctors often recommend keeping it on the acidic side to avoid mineral buildup that can form gritty, white urinary crystals. These crystals can irritate and even cause bleeding around the stoma and skin near it. So, understanding and managing your urine’s pH is key for your comfort and health.
• As you wrestle with the changes that come along with your ostomy, you might begin to wish for your “old life,” pre-surgery. If so, think about what you are truly missing about it…but don’t forget the pain, lack of control, maybe your cancer diagnosis, need to know where every restroom is, etc.…and remember that the choice/need to have an ostomy was not reached lightly. Give yourself some grace as you wrestle with these feelings…they are completely natural. Dr. Joga Ivatury, colorectal surgeon, discusses how to recover “better.”
• Remind yourself frequently that the steps you take today will determine your future habits. Resolve to do one positive thing today — whether it be a positive or hopeful thought, reaching out to a trusted friend, or honestly checking in with your feelings— that you can build on as you create your new normal.
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.
