One Year Later: Living with an Ostomy and Stoma Care Tips
Well, it's official: I have had my life-saving stoma for an entire year now. Within 2 weeks of my diagnosis, my oncologists and surgeons knew I needed to have my bladder out. Although an odd choice for someone younger, I opted for a urostomy over the other diversions because I wanted the shortest surgery and the shortest recovery time. After a year of living with an ostomy, I want to share the tips and tricks I have learned along the way.
To set the stage, I am now 29 years old (28 when diagnosed). I am active, very much a fashionista, and I work full-time. So I have made it a priority to make living with an ostomy work in my day-to-day life.
Take care of your peristomal skin
When caring for your peristomal skin, less is definitely more. Most people advise just a rag and water. I typically use the same gentle cleanser I use on my face on my peristomal skin. This cleanser doesn't leave any residue and is unscented. I find after a few days with my wafer on, water isn't quite enough. I have also used just the tiniest dot of facial moisturizer during the colder months when my skin all over tends to get dry and irritated.
Let your peristomal skin breathe
One of my biggest tips for peristomal skincare is to let your skin breathe. I typically change my bag twice a week, and I try very hard once a week to let my skin breathe. I will place a towel on my lap and let my skin air dry for a bit. This has really kept irritation minimal, and I find my bag feels especially comfortable on days when I do this. If you're not a fan of sitting bag-free, a bagless shower is just as wonderful!
Tilt your bag for a smoother look under clothes
I have experimented with shapewear, styles of pants, and even worn dresses exclusively in the hopes of concealing my bag from view. These days, I really don't care if the shape of my bag is visible, but I have figured out how to get the smoothest profile possible.
Tilt your bag! I wear my bag on an angle with the tip pointed inwards towards my legs; I then flip the tip underneath the bag. Even when my bag is quite full, I find that laying across my lower stomach this way, it at most looks like I'm a bit bloated from lunch.
Use a timer to help you remember to empty your bag
Having an ostomy, you do not get the same "full" sensation you would with a bladder. It is very easy to get busy and forget to empty before your bag is close to bursting. Obviously, you don't want to cause a leak or seam failure from an overly full bag, but letting output backwash against your stoma can lead to UTIs.
I tend to keep a reminder on my smartwatch to get up every hour and empty my bag. I'm pretty good at checking and emptying frequently. But answering emails or watching a good TV show can have me completely forgetting I have an ostomy bag that needs attention!
Hydration is key
No matter what diversion you choose, hydration should always be your daily priority. After my surgery, I went out and found a high-quality water bottle that would keep my water cold. I would remember to keep it with me at all times. My team actually wanted me to drink at least 10 ounces each hour while I was actively healing from my surgery. I now try to drink at least 70 ounces of water each day (not counting any coffee, tea, or sodas).
Whether you use a water tracker, phone reminder, or even marker lines on a water bottle, getting in the habit of getting fluids in your body throughout the day will ensure kidney health, prevention of UTIs, and keep sneaky dehydration at bay.
Everyone knows that as soon as you get out of surgery, your goal is to get walking. Walk as much as you safely can after surgery. But don't stop once you are healed. I consulted with my doctor, and as she cleared me for more and more activity, I did my best to push my body safely. I started jogging, swimming, doing yoga, bodyweight exercises, and (again, with my doctor's approval) began using small weights.
Whether it is working in the garden, going for gentle hikes, or a good sweaty run, talk with your doctor and get active. Don't let an ostomy stop you from doing the activities you enjoy. Sometimes, you need to get creative with a supportive belt or even barrier strips to keep the seal watertight, but an ostomy won't stop you from getting your sweat on.
Whether you are self-conscious of your ostomy, or you just prefer to tuck it away during intimate times, there is a wide variety of intimacy wear available. Vanilla Blush makes wonderful underwear that tucks the ostomy bag in a pocket and comes with a split crotch. Ostomy Secrets has lovely waistbands in a variety of colors and lace to tuck your bag away as well.
Intimacy wear is a great way to build back body confidence after surgery and make you feel secure.
Learn to laugh
Mishaps will happen when you are the proud owner of a stoma. Leaks happen, wafers come unstuck, you forget to close the tap on the bag, the night drain detaches, all kinds of odd things can happen. When ostomy ownership goes sideways, it can be incredibly frustrating and make you feel very defeated. I spent many a night angry that my night drain wasn't working properly, and shed a few tears when I sprung a leak in public.
These days, the "epic fails" are much less epic, and don’t happen very often. When the leaks happen, I have learned to just shrug my shoulders and laugh. Replace the tears and anger with laughter and ostomy life gets much easier.
Remember to be patient
Having a radical cystectomy and battling bladder cancer will quickly show you that healing takes time. Working up to walking to the restroom on your own will be a painfully slow process. Learning to care for your ostomy takes time. Learning to sleep with an ostomy takes time. Everything about this experience takes time and patience. You will hurry up and wait in many a doctor offices. You will tap your feet waiting on insurance approvals. You will sit impatiently through treatments. Time will be both your friend and greatest annoyance at times.
If I could give you one of those more important pieces of advice through all of this, it's to practice patience. Patience with yourself, your ostomy, your cancer, your entire experience with this "new normal."
I'm looking forward to learning even more about life with my ostomy and becoming an ostomate pro as I go through life with my stoma. Here's to another year sans a bladder! Tell us about your experience in the comments below, or share your story with the community.
Connect with other ostomates and urinary diversion members!
How long did you wait before telling others about your diagnosis?