Active with an Ostomy: My Experience and Tips on Getting Started
Last updated: February 2023
Before the symptoms of bladder cancer were revealed in my body, I led an active life and was getting in shape again. I had already experienced hardships and medical stress with being the caregiver for my father. After he passed, I rededicated my life to the things that I wanted to do. I was waking every morning and walking about 3 miles before I even got ready for the day. I was volunteering, swimming, and working out. I want to remain active with my ostomy, and so can you.
My bladder cancer symptoms took over
Early-onset of the disease and my ignorance of the symptoms gradually put an end to all of that. I couldn't stay out of the bathroom. Felt the need to urinate constantly, sometimes as often as every 5 minutes. I was having bladder spasms. Sleeping through the night became a foreign concept.
Then, the actual diagnosis. The roller coaster of treatment then took off.
Choosing bladder removal with an ileal conduit
I chose to go with an ileal conduit because I was working in a pediatric gastroenterology office and knew that I could have a good quality of life with an ostomy. What I didn't know was how challenging the entire treatment process really was going to be. I especially didn't realize just how much I would be physically torn down by the journey.
Still, I was determined to have an active life again. I still strive for that.
Going back to work
I went back to work earlier than the rehab doctors wanted me to, but it was truly the best thing I ever could have done for myself. It forced me to get up and move, even if it was only to go and empty my pouch in the restroom.
Gradually, my strength built back up. My energy and endurance to follow. It's still not great and I'm still dealing with peripheral neuropathy as a result of the MVAC treatments I received, but I try to be more and more active with my ostomy.
Working toward the lifestyle I want
I'm gradually increasing the time that I'm able to do household chores. Gradually increasing the distances I'm able to walk without taking a break. I started doing yoga. I attended a concert on my own. Last summer, I traveled - by myself - by plane, train, and car (all in one trip)! I have swum in pools and lakes. The return of hikes has been in my life. I have done some volunteering again. I am gradually all getting it back with the support of friends and family.
Being active with an ostomy
Sure, I have some leaks from time to time and have dealt with the consequences of not hydrating properly. The key point though is that I'm getting out there and doing it! I have a long way from where I want to be, but I'm doing it. Even if I can't do it, I'm trying!
I have 2 main tips for reinstituting activity post-bladder cancer with an ostomy.
Hydrate, hydrate, HYDRATE!
Water is great, obviously. However, I have found that water alone is not enough. I usually also need something with electrolytes. There are lots of products on the market now - with more coming out. You are no longer limited to Gatorade and Powerade if you do not like those particular brands. I prefer to carry packets with me so I can just add them to my water when I need to. Pickle juice (yes, the liquid from the pickle jar) is also really great for rehydration. There is actually science behind this and there have been published articles in medical journals about this recently. I have personally experienced the benefits of this, so I know it works for me.1
Just get out there and do it!
Put your self-doubt aside. Don't worry about whether or not you have a leak or what others think if they get a glimpse of your appliance. Just get out and do the things you've loved in the past - or try something new! Just be kind and gentle with yourself and allow your body to work up to what you were able to do before cancer.
The only regrets you will have will be if you don't try. I was scared at first, but I just went for it. I'm so glad I did!Connect with other ostomates and urinary diversion members!Have a question? Ask another ostomate - we're here for you!Visit our forumsShare your cystectomy and diversion story! It could help someone else feel less afraid.Share your story hereRead REAL Stories about Living with a Urinary Diversion.Check it out
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