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My name is Jodi Capobianco, I am 54 years old and have a permanent ileostomy.  Five years I was ago diagnosed with severe off-the-charts constipation and was to receive a temporary loop ileostomy.

I am so thankful that I did not let having an ostomy get in the way of me missing out on this awesome adventure.

Shortly after my surgery, I began having problems. To make a long story short, my colon became diseased and they removed it giving me a permanent ileostomy.  Unfortunately, shortly after my colon was removed I developed an abscess.  I actually ended up developing seven more before an amazing surgeon figured out that I had a leak.  He performed a small bowel resection and made my loop ileostomy an end.  That was over two years ago.  I was so weak when I came home I was using a walker.  I can honestly say life is now amazing. In fact, I just got back from rafting the Colorado River in the Grand Canyon for eight days.

There were no bathrooms, heck there was no nothing just the big outdoors. I went with my husband, our trip started on a Saturday morning when we flew from Boston to Arizona. I was pretty pumped when my ostomy was not an issue while going through security.  Not that it is a big deal to be patted down, but it was nice to be able to skip it.  When I fly I try to limit my intake so I am not having to empty on the plane.  I also stay away from anything carbonated when I am out, so no bubbles.  We arrived in Arizona after traveling for about 9 hours. We headed to our hotel, where of course our room was not ready and got lunch.  I knew I would be near a bathroom for the afternoon and evening so I ate what I wanted.

That night was the orientation for the trip. I learned we would on the bus for about three hours the next morning with no bathroom break. Departure time was 6:45 am.  I decided not to eat breakfast but brought a bagel with me. I ate about an hour into the trip. I knew I would be able to use a porta-potty at the boat launch.  On the morning of the trip I changed out everything.  I ended up using wafers that were precut.  I usually cut my own but I did not want to have to deal with that. I used closed-ended bags that were waterproof. I am usually a drainable girl, but again I knew there really would not be a place to drain anything especially during the day. I also used three brava strips for reinforcement, and I use a ring under my wafer.

I had two complete changes in my dry bag, then in my shorts or pants I had three bags in a zipper pocket, I also kept a bag in my backpack in case we went hiking.

We were all given two dry bags for our stuff, one we could get to during the day and one we could not.  In my day bag, I had enough supplies to do two complete changes, 5 disposable closed ended bags as well as five bags I could put the disposable bags in.  The first night when we stopped at camp I was given my own ammo box.  This was a metal box that sealed.  I was able to put all my waste into it.  In the morning I would give the box to the trip leader, she would empty it and then when we stopped at camp for the night she would discretely give it back to me. The only bathroom in the camps were either behind a tree or rock and they consisted of a yellow bucket with a toilet seat on it to pee in and a metal bucket that contained waste.  I would pee in the yellow bucket but luckily did not have to deal with the smelly bucket for pooping in.  I would simply pop bags on and off when I needed to.

When we arrived at the camp for the night, which generally was a large sandy area by the side of the river, we all helped unload the boats.  Once the boats were unloaded, one would find their campsite for the night, lay out a tarp and sleeping pad. This is when I would take a minute to get organized. For me, this consisted of placing two closed-ended bags and baggies in a plastic cup near my sleeping bag.  This was so I could change in the middle of the night if I needed to. I also would place my headlamp nearby so I could find it easily in the dark and see what I was doing.

When popping a pouch on and off, I would place a small baggie (I used the blue ones that came with my bags) under the disposable bag so when I unclicked and popped it off it went right into that bag.  Next, I would pop on a new pouch and be good to go.  For the most part, I changed bags when we got to camp, right before bed, once in the middle of the night and when I woke up.

Having the precut wafers and closed ended pouches made all the difference in the world.

During the day I would set myself up as follows:  I had two complete changes in my dry bag, then in my shorts or pants I had three bags in a zipper pocket, I also kept a bag in my backpack in case we went hiking.  I would change bags after breakfast before getting on the boat and when we stopped for lunch.  I was generally good until we got back to a camp.

To change I would hide behind a rock or a tree or sit on my sleeping bag with my back to everyone.  I also had a small package of biodegradable baby wipes with me.

There were two times I had to change everything.  The first was three days into the trip.  I got off the boat and my skin itched.  This is generally a sign for me that something is leaking.  I had been in the water a ton this day so I was not surprised.  I peeled off all the adhesive from the brava strips as best I could, dried the area off, and put on a new wafer and popped on another bag.  The second time was two days later.  I knew that this time I really needed to wash the area and try to get a bit of the adhesive off my skin.  So, I went down to the river with a small washcloth that I had packed.  I took everything off and dipped the washcloth in the river and then scrubbed my skin as best I could.  I dried the area, covered my stoma with the cloth and went back to my campsite where I put on a new ring, wafer, brava strips and pouch. I did this all while trying not to get any sand on my skin.  Having the precut wafers and closed ended pouches made all the difference in the world.

The last day on the river was a half day.  Once we got off the boats we are onto a bus for three hours.   Luckily there was a real bathroom stop.  Here I just switched out bags.  We got back to the hotel and into the shower I went.  I had so much adhesive on my skin.  I used a ton of adhesive remover, then took a face cloth and washed the whole area.  My skin looked pretty good for being engulfed in adhesive for 8 days lol.  It took a while to get all the adhesive off.  It felt amazing when it was.  Obviously, when I got out of the shower I dried off and put on a new ring, wafer and bag, no brava strips.  My skin was very happy for this.

I am so thankful that I did not let having an ostomy get in the way of me missing out on this awesome adventure. I refuse to let anything get in my way of living.  I attribute the success of this trip to closed-ended bags, precut wafers, being organized but also for patting myself on the back and having an awesome attitude.

It’s summer and you should not let your ostomy stop you from swimming, exercising and having fun in the sun. Sweat and lots of time in the water can decrease the number of days between pouching system changes for some but there are some simple things you can do that can help. Elaine shares in this video several tips to get your wafer to stick longer. Check out her advice to prolong adherence of your ostomy pouching system especially when swimming, exercising and sweating more this summer.

UOAA also has more information on swimming and advocacy tools for any issues with access in public facilities.

Make sure to grab your FREE GUIDE: ‘3 simple ways to eliminate fears about your ostomy” by visiting Elaine’s website www.ElaineOrourke.com

Elaine O’Rourke is the creator of the program “Surviving To Thriving: Overcoming Ostomy Challenges So You Can Live a FulFilling Life”. She is a certified Yoga Therapist & Teacher since 2003, Sound Healer, EFT & Reiki Practitioner, Recording Artist and International Retreat Leader. Her lighthearted and fun personality shines through her teachings/programs as she loves to inspire others. She is a contributing writer to the national Phoenix Magazine and UOAA, presenter at the UOAA National Conference and speaker at Girls with Guts retreat.  

Web: www.elaineorourke.com

Facebook: https://www.facebook.com/ostomyibdlife/ 

Instagram: https://www.instagram.com/elaineorourkeyoga/ 

Email: Elaine@ElaineOrourke.com 

Having an ostomy should not prevent you from swimming. Below are some helpful tips to get you feeling confident in the water, whether it’s in your own backyard pool or at a beach.

  • You can swim or be in the water while wearing your pouching system. Remember, your pouching system is water-resistant and is designed not to leak with the proper seal. Water will not harm or enter your stoma.
  • Prior to swimming, make sure your seal is secure.
  • Empty your pouch before swimming. Also, ensure your wafer has been on for at least an hour prior to getting wet. If you are nervous about output, eat a few hours before jumping in.
  • If you use a filtered pouch, use a filter cover sticker on your deodorizing filter to prevent water from entering the pouch. You can remove the cover once you are dry.
  • Wear what makes you feel the most comfortable. Swimming with an ostomy should be fun and worry-free regardless of what you’re wearing. Shop with confidence knowing there are so many options that could work for you.
  • Always carry extra supplies in case you are somewhere where supplies may not be available.
  • For extra peace of mind, use barrier strips if you will be swimming for an extended time.

me+ Team Member Tip: “I tell people who are scared to swim with an ostomy to spend a few hours in the tub on a lazy day. If your pouching system holds up to that, then the pool should be a breeze.” ~Sarah B.

Editor’s note: This article is from one of our digital sponsors, ConvaTec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

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Exercise your fitness options with these helpful tips

by Wil Walker, MBA, BSN, RN, WOC Nurse Manager, Clinical Education, Hollister Incorporated

When is it safe to start exercising after ostomy surgery?
Stoma surgery is a major event that should not be underestimated. The first few weeks or even months following the operation may be difficult as you adjust gradually to having a stoma. The easiest and most effective form of exercise can be walking. It’s best to check with your healthcare provider to determine the right time for you to begin exercising, as every person can be different.

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I’m nervous about doing sit-ups and crunches because I have heard that I could develop a hernia. Are there precautions I can take to avoid this?
There may be a risk you will develop a hernia around your stoma that can be associated with straining or heavy lifting during strenuous abdominal activity. You can help prevent the development of a peristomal hernia by taking certain precautions. Keep your weight in check and talk with your surgeon before resuming any abdominal exercises.

How will I know that I am sufficiently hydrated?
One good sign of being well hydrated is passing clear or straw-colored urine throughout the day. Dehydration can be a concern for overachievers, whether they have stomas or not. Drink plenty of fluids at every opportunity to avoid problems with your stoma and with dehydration.

I am still very tired after my surgery. What kind of exercise can I do to start out?
Begin by walking in your house. Special videos and DVDs, or even just some invigorating music will help set the pace. You might practice going up and down stairs to increase stamina and endurance. But, if weather permits, walk outside in the fresh air to help boost your physical and mental spirits!

I love swimming but I’m nervous that my pouch will become loose in the water. Is there anything I can do to make sure this doesn’t happen?
This is a valid concern for a person with an ostomy. To determine how your pouch might perform while swimming, it is recommended to “test” your pouch. Sit in bath water for a while and assure yourself that the seal stays snug and leak-free.sports and fitness with an ostomy, sports, fitness, exercise, active living, colostomy, ileostomy, urostomy

I ran my first marathon after ostomy surgery and little red marks appeared on my stoma. What are these and should I be concerned?
With a lot of running, little red marks similar to mouth ulcers might appear on the stoma because of rubbing or chafing. They should heal quickly and disappear with rest. If they don’t resolve, contact your healthcare professional.

When I exercise I perspire a lot. Is there anything I can use to avoid chafing around my pouch?
If your pouch fits properly and is not too long, it should not touch or rub against the skin. Empty your pouch before any strenuous activity as well to decrease the weight of your pouch. Consider using a pouch that has a comfort panel to avoid the pouch film from rubbing against your skin.

Have a question that wasn’t answered here? Check out this helpful new brochure from Hollister Incorporated. Living with an Ostomy: Sports & Fitness.

Hollister Secure Start services provide ongoing support to people living with an ostomy. We are here to help! Call us today at 1.888.808.7456.

Editor’s note: This educational article is from one of our digital sponsors, Hollister Incorporated. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

Finding Confidence and Rocking Your Own Style with an Ostomy

By Tricia Hottenstein

I was packing to head out on a short vacation to Atlantic City and had all my outfits ready in my brand new suitcase. But when I went to pack my swimsuit, I started thinking about walking around at a hotel pool with my ostomy bag sticking out. Something about a hotel pool as opposed to just walking on the beach made me uneasy. I figure I don’t know the people on the beach and they’ll never see me again. But in a hotel for several days? Those people would recognize me. They’d see me dressed up for a nice dinner and know that underneath all that jewelry and makeup, there was a person with an ostomy bag glued to their stomach. A person who earlier in the day had a wet ostomy bag sticking out between their swimsuit pieces. And let’s be honest. A wet ostomy bag is a revealing ostomy bag. There’s no questioning what’s hiding inside of it. Something about that wasn’t okay with me.

Generally speaking, I feel pretty confident about my ostomy. It saved my life and I went from a love-hate relationship with it, to a genuine love of it, to more of a state of ignorance that it even exists. I’m not shy about telling people my situation and I will often show it to people who ask questions. But when it comes to swimsuits, the struggle has been a little more mental. I’ve previously tried one-piece suits and I hate them. I hate the way they pull on my bag when they get wet, the way they stick to every crevice of my body, the way I constantly check to make sure my bag isn’t leaking the second it starts to puff up. I tried bikini styles. My body is not made for a bikini, and the more often I wore it, the more sure of this I was. And then, hallelujah! The high-waisted trend hit stores, and I found a happy medium. A high-waisted bottom to cover most of my bag while still allowing it to breathe, and a cute colorful top that would hopefully draw attention away from the bag peeking out from my bottoms.

I love that I didn’t need to strip a whole wet swimsuit off in order to empty my bag, and I could easily flip it out after the pool to dry it off (which is a necessity in order to keep my sensitive skin from getting angry). The high waist also gave multiple coverage options and I could choose when and how my bag would be displayed. I could tuck it into the bottoms and feel secure, or leave it out over top of the suit if need be. I chose to secure my bag slightly flipped up inside the bottoms with just the top sticking out. Now this I could rock. And I did. But around complete strangers who would be seeing me over and over again, while never actually talking to me to understand who I was and what I’ve been through? It bothered me.

I bought a pretty cover-up. I tried on several new suits, but none worked the wonders I’d hoped they would. I even considered stopping on the way to the shore to keep trying. And then the lights of Atlantic City sparkled before me, and the tropical drinks and palm trees were calling me from the pool. So I went for it. I wore the cover-up and walked to the pool. Of course, I got stuck with several people in the elevator and noticed their eyes glancing down, and my fidgeting was more than noticeable.

I walked in the pool room and found a chair in the corner. I ordered a drink, hopped in the hot tub, and looked around. And I noticed every single other female in there looking as insecure as me. Ladies with towels draped around them the second they were out of the water. Women with tee shirts instead of swimsuits. Some just sitting on the outskirts, partially hidden by palm trees, in regular clothing. And suddenly I was okay. Forget this bag on my stomach. Every single person has something about them they don’t always love. I’ve got stretch marks I don’t worry about, and plenty of extra flab that doesn’t bother me. But for some reason I was getting caught up over this little protrusion on my stomach; a scar of a war I fought hard against and finally won. And I love this thing!

I was honestly upset with myself over the few days for the waver in my self-confidence. I got out of the hot tub, walked around to the pool, and held my head up a whole lot higher. And everyone who’s eyes glanced downward? They looked at me genuinely, some smiled. Because people who rock their scars in public have already changed perceptions. Chronic illness is becoming less and less of a taboo subject. We’re shaking the world by the shoulders. And THAT is beautiful.

Tricia Hottenstein blogs about life as a mother and living with an ostomy at stomama.com

After eight years of not responding to western pharmaceuticals, at the age of thirty, I found myself facing a colectomy. While I had anxiety about the ostomy surgery and fear of the unknown, my overall emotion was relief. This surgery was hopefully going to be the end of many years of pain and suffering. Thanks to the encouraging words of other ostomates I was wheeled into surgery with a smile on my face, excited about what the future would hold for me–I saw endless possibility!
The support I received from the local ostomy support group along with many wonderful bloggers inspired me to be vocal about my story. I started my own blog and instagram account to raise awareness about life with an ostomy and provide support to fellow ostomates. There is so much value in people who are facing an adversity to come together and lift each other up.
I’ve been on a rollercoaster ride with my permanent ileostomy (I named her Rita) for the past two years. Life is full of ups and downs, however, I am proud to say that Rita and I have traveled to Hawaii to snorkel in the ocean and hike through the cliffs of the Napali coast. We wore a bikini on the beaches of Maryland’s eastern shore, danced our way through weddings, explored new foods at restaurants with friends and worked our way through a graduate degree in acupuncture!
Philosopher Wayne Dyer once said, “When we change the way we look at things, the things we look at change.”  When diagnosed with ulcerative colitis it was easy to fall into a mode of feeling isolated and alone during periods of flares. I forgot what life was like as an energetic and healthy young professional. The expectation of a healthy life and the unfair reality caused a lot of unnecessary suffering. What I learned is that we all have the option to dance with life. Crisis can open a door to a new opportunity, a loss can be seen as a gain, and a breakdown can turn into a breakthrough.

You can follow Rena’s story on Instagram @myintestinalfortitude or her blog www.myintestinalfortitude.com