Living with a stoma can be challenging, but it doesn’t have to limit your lifestyle. In this blog post, we will explore what a stoma is, the conditions that may lead to it, and how it can impact your daily life.
Stoma is a Greek word meaning ‘opening’ or ‘mouth’. A stoma is an opening on the abdomen that can be connected to either your digestive or urinary system. This will allow waste (urine or faeces) to be diverted out of your body.
Common Reasons to Have a Stoma Include:
⦁ Bowel cancer
⦁ Bladder cancer
⦁ Chrohn’s Disease
⦁ Inflammatory Bowel Disease (IBD)
⦁ Diverticulitis
⦁ Ulcerative Colitis
⦁ An obstruction to the bladder or bowel
The three most common types of ostomies are:
An ostomy is a surgical opening in the abdominal area that can be temporary or permanent. During surgery, and depending on which organ is used, they take on of the three organs and surgically make an incision in your abdomen and stich that piece to the outside. That piece the ostomy bag covers is called a stoma.
For a colostomy, part of the large intenstine (or colon) is used to create the stoma. For the ileostomy, part of the small intestine is used. For the urostomy, which is what I have, part of my ileum was attached to my kidneys which directs the urine into my urostomy bag.
Your surgeon will have information about what to expect and how to prepare for your specific ostomy surgery. Post-surgery, you will be assigned a Stoma Care Nurse. They will give you guidance and support on how to correctly change your stoma bag, take care of your skin around the stoma and suggestions on how to adjust to life wearing a stoma bag.
After your surgery, you will experience many different emotions. When I came home after my urostomy surgery, I was physically weak and mentally drained. I couldn’t believe what had happened, nor how to begin to cope with it moving forward. I had daily visits from a Personal Support Worker (PSW). She would come in and help me change my appliances, check my stoma site and tried to answer any questions I had.
I found that walking a little bit each day helped me gain strength. Eating healthy natural foods that contained protein and healthy fats also improved my stamina. I found it crucial to drink plenty of fluids. Staying hydrated helped all of my bodily systems.
Accepting the fact that I am an ostomate has not happened overnight. My surgery was over 8 years ago and I still have moments of frustration and anxiety. My way of life changed. My body had changed. It is important that you share your feelings with family, or your health care provider. Thankfully, here in Canada and in the States, there are a number of support groups that you can join, or read blogs like this one to help you recognize that you are not alone on this journey.
It is important to properly care for your stoma. The skin around the area can be very sensitive if not cared for properly. Your stoma care nurse will help you find the correct appliances to use and will give you advice on how to ensure proper care. Despite due diligence, problems can (and will) occur. I am a urostomate so I cannot speak personally to all of these potential issues. Here are some of the common stoma problems you may experience in your everyday life.
Leakage is a big concern for many people with a stoma. Leakages can occur for a number of reasons. When I first came home from the hospital, I found it hard to get a good seal on my appliance because as my body healed, the shape of my abdomen kept changing. Once my weight had stabilized and my wounds had healed, I found that changing my appliance regularly, ensuring the residual glue from prior appliances was gone, the area of skin was thoroughly clean and a applying a warmed flange (the part that attaches to your body) was really helpful. These suggestions have not eliminate all leaks, but have certainly helped.
Ballooning can occur when a colostomy or ileostomy bag blows up with wind. The common cause is usually because the filter becomes wet or blocked with stool. I cannot speak to this from experience, but I have heard from a number of people that avoiding spicy, gaseous foods, not drinking fizzy drinks and eating regular meals helps to reduce the amount of air that is ingested.
Sore Skin around your stoma, redness and even breakage of the skin can happen. Learning how to correctly fit your stoma bag is important. Your stoma care nurse will teach you how to measure and properly cut the correct size opening. For me, I have found that changing my bag on a consistent basis, using natural soaps, being gentle when I clean the area, and ensuring the skin is dry before applying a new appliance helps.
Parastomal Hernias can develop when there is a weakness in the muscle wall. Risk factors such as weight or strenuous lifting can cause the muscles around the stoma to stretch or weaken. Seek medical attention should you think you are experiencing this. If you do have a hernia, ask your physician if our OCC hernia support belts would be beneficial in making you more comfortable. Our OCC hernia belts are not designed to fix nor prevent hernias, rather to provide the extra support required to perform day to day activities.
Having a stoma should not limit your activities. Here are some tips I have for traveling –just to the grocery store, or for going on a big trip.
Daily Errands
I always have an extra pre-cut appliance, wipes, make up removal pads (they are handy to put over your stoma to absorb liquid while you are preparing the appliance) and towels in my glove compartment for emergencies.
I use an OCC seat belt protector that protects my stoma from the pressure of the seatbelt. It has engineered foam that rests on either side of your stoma which gives more security from the seatbelt in case of sudden stops. You can find these in our accessories section.
I make sure I have emptied my bag before leaving the house. On longer road trips, I make myself aware of where there are easily accessible washrooms.
Vacations, Overnight Trips, Flying
One key factor is to plan ahead. Make a checklist of the equipment you need to take with you. Estimate the number of bags you would normally need for each day of your holiday – and double it, with a few extras! Consider if there’s a change in climate and temperature – this could mean many more bag changes may be necessary.
I always keep my appliance supply in my carry-on hand luggage. It remains with me at all times and within easy reach so that it is not misplaced. I pre-cut the flanges as the scissors should be packed in your checked luggage. I also travel with my night bucket in the carry-on luggage. If I can, (depending on where I am flying to and airport restrictions) I will also bring vinegar with me to make rinsing out the bucket easier.
When flying, I tell the screening officer that I have an ostomy before the screening process begins. While I have never found this necessary, you could use the Family/Special Needs security line where the screening officers are trained to provide additional assistance.
I choose an aisle seat to make using the washroom more convenient. Note that your bag will not “blow up” because the cabin is pressurized. I try to limit my water intake before the flight to make myself more comfortable with the time before take-off when the seatbelt light is on. Try to keep the seatbelt below your stoma.
Health Canada makes special exceptions for travelling with medical devices. Carry-on limits do not apply to medical supplies. This means that you may bring a separate carry-on bag for your ostomy supplies. If you are using ostomy paste tubes, they may exceed the limit for gel/liquid maximum but must be presented to the screening officers separately. Remember, this applies to travel within Canada or leaving Canada, but may differ outside of Canada. You may want to contact your airline ahead of time so that there is no confusion on the day of the flight.
Ostomy Canada provides a printable Traveller’s Communication Card. If travelling to places where you may not speak the language, this could be helpful.
Living with a stoma can be challenging, but with the right knowledge and support, individuals can lead fulfilling lives. Understanding what a stoma is and how to care for it is a crucial step in this journey.
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