How Coaching & Technology Reduced Hospital Readmissions Rates

, , , , , ,

A research study about the benefits of perioperative self-management support for ostomates

 

Ostomates are not only dealing with intestinal concerns but are also at risk for a multitude of complications. Data shows that 38% of ostomy patients find themselves back in the emergency room or being admitted within the first 90 days post operatively [1]. This is one of the highest rates of readmission when compared to other types of surgery. The most common cause for re-admission is dehydration, at approximately 40% of post ileostomy readmissions [2]. We also know that 84% of ostomy patients develop skin issues. The causes of these can be chemical, mechanical, or microbial, and possibly avoidable. Ostomates also have significantly increased healthcare costs, especially when affected by peristomal skin complications, and leakage [2]. It is known that 25% of ostomates develop renal failure within two years. The complications these patients encounter require 7x more outpatient visits than the average patient. And 29.1% of ostomates experience readmission which costs approximately $16,000 per patient [1]. These statistics show that specialized care for these patients is imperative to improving patient outcomes in this patient population.

A recent study published by the American Society of Colon and Rectal Surgeons shows how one company, 11 Health and Technologies, is utilizing a novel care approach to improve the quality of life and outcomes in this type of patient. The company developed alfred: SmartCare, a unique care model designed to meet the specialized need of ostomates. The program consists of a SmartBag and SmartWafer, mobile application, patient coaches (who were/are also ostomates, trained to support this type of patient) and the nursing team. The patient wears the SmartBag and SmartWafer, which submits data to the mobile application and clinical dashboard. The data is visible to the patient, their coach, the nursing team and the patient’s clinicians to be used to identify trends and abnormalities in the values. The patient can see how much output they have expressed and what the temperature is of their peristomal skin. These data points can help to curtail oncoming hydration issues or infections. When abnormalities are identified, the coach can work with the patient to provide education and can escalate issues to the nursing team for medical guidance.

In the study, the outcomes of 66 new ostomates from 19 different states were monitored for the first 30 post-operative days. The study showed that close monitoring of ostomy output volume as well as perioperative self-management support can significantly reduce the rate of hospital readmissions in the first 30 days after ostomy surgery.

Patients and healthcare providers should be open to the use of innovative programs that use remote monitoring along with telehealth, as they can be beneficial in improving the outcomes of patients in the immediate post-operative period.

To read the full study, visit the Diseases of the Colon & Rectum online at: https://journals.lww.com/dcrjournal/Citation/2020/12000/Improved_30_Day_Surgical_Outcomes_in_Ostomates.17.aspx

Editor’s note: This article is from one of our digital sponsors, 11 Health and Technologies. 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.

[1] Tyler, J. A., Fox, J.P., Dharmarajan, S., Silviera, M. L., Hunt, S. R., Wise, P. E., Mutch, M. G. (2014). Acute health care resource utilization for ileostomy patients is higher than expected. Diseases of the Colon & Rectum, 57(12), 1412-1420.

[2] Justiniano, C. F., Temple, L. K., Swanger, A. A., Xu, Z., Speranza, J. R., Cellini, C., Salloum, R. M., & Fleming, F. J. (2018). Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors. Diseases of the colon and rectum, 61(11), 1297–1305. https://doi.org/10.1097/DCR.0000000000001137

[3] Taneja, C., Netsch, D., Rolstad, B. S., Inglese, G., Eaves, D., Oster, G (2019). Risk and economic burden of peristomal skin complaints following ostomy surgery. Journal of Wound, Ostomy and Continence Nursing, 46(2), 143-149.

[4] Fearn, Robert I. M.D., M.R.C.P.1,2; Gorgun, Emre M.D.3; Sapci, Ipek M.D.3; Mehta, Saahil N. M.D.2; Dinh, Binh B.S.2; Yowell, Quinn V. M.S.2; Eisenstein, Samuel M.D.4 (2020). Improved 30-Day Surgical Outcomes in Ostomates Using a Remote Monitoring and Care Management Program: An Observational Study. Diseases of the Colon & Rectum: December 2020 – Volume 63 – Issue 12 – p e581-e586.

Holidays with an Ostomy

, , , , , ,

By Molly Atwater

Ah, November… the leaves are changing colors and falling from the trees, the jack-o-lanterns have been put away and exchanged for candy canes, and the Black Friday sales emails have started trickling into our inboxes. That can only mean one thing: the holiday season is upon us! It starts with Thanksgiving and after that there are still lots of cookies to bake, memories to make, and laughs to share. But what does that mean for those of us with ostomies? The holiday season is inherently stressful, but adding medical issues on top can feel overwhelming. But fear not – with a little extra planning and mindfulness, you can handle the next few weeks like a pro. Here are a few tips and tricks to make sure you have a HAPPY holiday!

Travel Prepared

If you must travel during this time, make sure you pack more than enough supplies. Odds are you won’t need all of them, but it’s always better to be safe than sorry. My rule is to figure out how many bag changes I expect to perform while I am away, and then pack double that amount of supplies.  That way, even if I have to do extra bag changes, I never have to worry about running out of my necessities. I also pack in-bag odor reducers and a small bathroom aerosol spray so I don’t have to feel self-conscious about any expected or unexpected ostomy smells.

If your holiday plans include traveling by airplane, pack your supplies in your carry-on. Airlines are notorious for misplacing luggage, so keeping your supplies with you at all times can save you a lot of worrying. Also, go ahead and download one of the UOAA TSA advocacy cards to make your security checkpoint experience easier. For even more peace of mind contact TSA Cares 72 hours before your flight for additional assitence. Don’t forget to throw an empty water bottle in your carry-on to fill up once you’re at your gate to prevent dehydration. 

Enjoy Meals with Peace of Mind

When it comes to eating, everyone’s post-ostomy diets are different. For some, ostomy surgery can open up foods that were previously off-limits, while for others, options might be more limited. Regardless of your digestive system’s abilities, take the opportunity to make your meals a little more festive! If you can eat things you’ve missed for a while, go for it! But if you’re dealing with more restrictions, all is not lost. Maybe you could make macaroni and cheese with turkey-shaped pasta or try your hand at some homemade applesauce.

Chew, chew, chew! A lot of the foods we eat over the holidays are out of our normal diet, so give your body some help with digesting. It’s not a ton of fun to step away from the festivities to deal with a blockage! If at all possible, it’s also helpful to stay on your normal eating schedule. With all of the uncertainties that come with the holidays, having one steady touchstone can really help.

Alcohol is a staple for some families’ celebrations, but it can be very dehydrating. That’s an issue for everyone, but it’s crucial for those of us with ostomies. Try to alternate your cocktails with a glass of water or your electrolyte beverage of choice. Don’t forget that with the weather cooling down, warm drinks like tea also count as hydration!

Trust Your Emotions

The holidays can be emotionally challenging for everyone, but for those dealing with chronic conditions, things may feel a little tougher.  If you are feeling blue, that is ok! All emotions are valid, so give yourself the time and space to feel sad or angry and to grieve what was.  But it’s also a great time of year to reflect on the things that you are grateful for, whether that’s your support system, your health, or even just for making it through this crazy year.

Some people don’t mind talking about their medical conditions, but if you’d rather not focus on your ostomy this holiday season, think of some ways to steer the conversation in a different direction. The questions people ask typically come from a good place, but you are fully entitled to a few hours without thinking about your health.  Brainstorming quick responses or coming up with other topics to bring up instead can help you feel more prepared if you do find yourself in a situation where you want a quick “out.”

Listen to Your Body

Dealing with chronic health conditions is exhausting, and putting on a smile when you aren’t feeling great makes it that much harder. Finding others who can accept and acknowledge that things are hard instead of offering common and well-meaning phrases like “it will get better” and “stay strong” can be extremely helpful and validating. Nobody wants to be a Scrooge during this time of year, but having a safe space where you can feel seen and heard can bring you back into the celebration faster than wallowing alone.

Find an outfit that makes you feel AMAZING with your ostomy! Since a lot of us have spent more time in sweatpants than ever before thanks to quarantine, take the opportunity to wear something that makes you feel confident. It doesn’t have to be fancy – maybe just your favorite pair of pajamas or an extra-festive mask!

Get Creative

If you can’t participate in some of your favorite holiday traditions, now is the time to get creative! There might be ways to augment some existing traditions, like making different cookies without hard-to-digest ingredients, or you can create brand-new ones.  Maybe it’s time to introduce a holiday movie marathon or invite your friends to join you on a wintery walk through the woods! Whatever you choose to do, I encourage you to find an activity that brings you joy.

The holidays might feel tricky to navigate, but with a little extra preparation, you can remove ostomy stress from your list of worries.  Whether you’re a new ostomate or a seasoned pro, I encourage you to find your own tricks for making this time of year as merry as possible. From all of us here at UOAA, we wish you a happy and healthy holiday season!

 

Molly Atwater is former UOAA Director of Young Adult Outreach. After struggling with chronic constipation for decades caused by a collagen deficiency disorder, she underwent ileostomy surgery in June 2016. In addition to serving with the UOAA, Molly runs a social media account (“MollyOllyOstomy”) that aims to teach her more than 20,000 followers about life with an ostomy and other chronic illnesses. She lives in Northern Virginia with her husband, Thomas.

Tips for Coping in a Crisis

, , , , , ,

Two ostomy community leaders discuss effective ways to stay positive when times get tough.

Living through a crisis is hard for anyone, but there is an extra layer of concern for people with ostomies. Hollister sat down with two influential people in the ostomy community to find out how they cope during challenging times.

Amber Wallace is the creator of the Ostomy Diaries YouTube channel and social media platforms, and Dr. Paul Wischmeyer, MD is a critical care, perioperative, and nutrition physician at Duke University School of Medicine in Durham, North Carolina. Both Amber and Paul live with an ostomy.

Q: How can people with ostomies stay healthy both physically and emotionally when facing a crisis?

Amber: The best way to take care of your emotional health is to take care of your physical health. Continue to take your supplements. Stick to a schedule and make checklists. During a difficult time, I do the same things at the same time every day and that helps. It’s also important to get enough rest and exercise, even if you have to find a routine online. Grief and anxiety can manifest physically if you don’t put those things into practice.

Paul: I agree with taking the proper supplements. Some of us with ostomies absorb vitamins differently, so it’s important to consult your doctor before starting a regimen. Exercise is also very important. As a senior in college, I was doing research with a doctor at Mayo Clinic. One day he said, “Paul, you’re getting soft and look a little out of shape – do you want to keep getting sick? You should start running and taking better care of yourself.” I had never had anyone say that before and was motivated (and a little miffed) so I started running and ran almost every day for a year. And when that same doctor performed my tenth surgery to remove my failed ileal pouch, it took only four hours instead of eight. Afterwards he said, “Your abdomen looked like you never had surgery – your adhesions were gone! Whatever you did in the last year, you should definitely keep it up!” I haven’t stopped running and exercising since.

Q: What can we do to stay healthy if we have to travel during a health crisis?

Amber: It’s important to keep a change of ostomy supplies on your person when traveling and make sure to stay hydrated. We all have leak stories. One time I was hiking in the Great Smoky Mountains and my pouch fell off. I had to change it in a porta potty! And, of course, I use hand sanitizer constantly, especially on my phone.

Paul: I’ve had leaks on planes and have had to run to the washroom with it pouring down my leg. Never a dull moment with an ostomy some days! I keep supplies in a small kit. I also always wear an ostomy belt, which helps keep my pouch secure. When my wife and I travel now we wear masks and bleach wipe everything we have to touch.

Q: Where should people turn when having a really bad day?

Amber: Stay connected with nature and focus on things that are beautiful. Take a moment and be still. Keep grounded and turn to your faith. It’s OK to cry and let those emotions out. Recognize it, feel it, and embrace it. There’s a myth that if you ignore depression it will go away. You have to deal with it before you can move ahead. Last year after my wedding I was feeling down and didn’t know why. I was too ashamed to tell anyone. So I decided to speak to my doctor. He ran some tests and it turned out that my vitamin levels were out of whack. Never be ashamed to talk to your doctor, that’s what they’re trained in.

Paul: Well, as I shared before, exercise has been a true lifesaver for me. When I’m down I also often turn to my family. Being vulnerable is hard especially when you’re sick. I often have trouble loving myself with a body that could turn on me and threaten my life at any moment. Just a few years ago, I was sick again and needed three surgeries and a prolonged hospital stay (almost a month). My wife slept every night at my bedside in the hospital. Through that I realized that perhaps I am loveable no matter what. When feeling depressed, another resource I often use is to connect to the ostomy community on Instagram and other social media. I’ve seen so many people get support from others all over the world. It’s definitely healing to share your story…and to hear others and know you are not alone.

Q: A crisis can present problems with participating in milestone events, such as graduations and funerals. How can people still stay connected?

Amber: If it’s a death, you can honor them by the way you live your life and stay positive. That’s how you can keep their memory alive. If it’s a graduation or birthday, plan something with the person or people when you’re feeling better or the crisis is over. Connection is so important. Check-in with people, even your happy friends. You never know what they’re going through. Gratefulness works too, I write down one thing I’m grateful for each day and put it in a jar.

Paul: I agree about gratefulness. In our family, we play a game every night called “3 GOOD THINGS” where we all go around and name three good things that happened each day. At our hospital, we are spending conscious time thanking people for the little things they do. Getting out of your head and thanking someone else is so essential and therapeutic. It’s so important especially if you’re down. Gratitude is as rewarding to yourself as it is to the one you’re thanking.

 

This is an excerpt from “Tips for Coping in a Crisis” in the Hollister Incorporated Ostomy Learning Center. Read the full article here.

 

Editor’s note: This 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.

How to Have a Thriving Social Life While Living With an Ostomy

, , , , ,

 

Getting to a place where you feel confident in yourself and your new routine might take some time. There are many factors to consider following your ostomy surgery, but there are also many resources available to you while you are adjusting to normal life. Having a thriving social life is not out of the question, and with some time and patience with your body, you will be living your best life.

Beginning Stages

In the beginning, it will be important to keep some sort of a journal or diary as you experiment with new foods and beverages. Figuring out how different foods and beverages affect your body will influence your social life with regards to dining out. It might be helpful to eat smaller meals more often throughout your day as you record what foods tend to cause more gas or which foods are harder for your body to break down. Remember to drink lots of water and chew your food well.

As you move from blander and softer foods to a more regular and high-fiber foods, you will notice more regularity in your bowel movements. Understanding your body’s schedule will be key in planning outings, dates, and events. As you begin to venture out of the house more, remember to bring extra supplies with you and locate the restrooms should you need one with short notice.

Getting Out There

As your confidence builds, and your ostomy becomes routine and normal to you, saying ‘yes’ to more things will become easier and easier. If you were an active person before your surgery, you will be able to resume your active lifestyle. Whether going to the gym, running along the beach, hiking through a forest, or playing a pick-up game of basketball, exercise is key to keeping you mentally, emotionally and physically fit. While you will need to be cautious in the beginning so you can fully heal, there are few limitations on what your body can do with ostomy. If you are having a hard time figuring out what clothing or specific products will help to keep things in place during your activities, Coloplast has put together solutions for a variety of different sports and activities.

Making friends aware of your new ostomy can be intimidating at first. Preparing an informative, concise story to tell people may help ease your mind. Connecting with your friends and family can help you to stay positive and hopeful and will make the transition back to regular life much more manageable. Share as little or as much as you feel comfortable about your ostomy, but keep in mind that talking about it can be beneficial to both parties.

If you are in a romantic relationship, it is likely that your partner is already aware of your surgery and new ostomy. Good communication and honesty about your feelings and your partner’s feelings will be vital to the future of your relationship. It may take time for you to feel ready to be sexually active following your surgery, but exploring this as a couple and in the timing that works best for you will go a long way in helping your relationship succeed.

Meet Others Like You

You are not alone in this new change to your body. There are many people living with an ostomy already out there who are interested in connecting and sharing their stories. It can be helpful to talk to someone who is in a similar situation and who will understand the ups and downs of this new routine. Getting connected to a group or network that shares your story can be radically healing and help with your confidence and self-esteem, not to mention broaden your social network. If you aren’t ready to venture out to a group just yet, you may want to begin by watching and hearing stories from others living with an ostomy to see how they were able to travel, date, go back to work, stay active, and enjoy a healthy sex life.

Whatever stage you are at in your recovery and healing process; if you are adapting to a new routine with your pouching system or working your way to sexual confidence with a partner, know that it is possible. While it may feel daunting to say yes to a date or go out to dinner with a group of friends, with just a little extra planning and the support of others, you can have a thriving social life with an ostomy.

 

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

Date Night with an Ostomy

, , , , , ,

Are you feeling nervous at the thought of date night after ostomy surgery? You’re not alone. With a little planning ahead, you can be sure to have a great night out.

My first question would be, what are your plans for the evening? Plans might be different for a first date versus dining with a long-term partner or spouse. You might be considering an outdoor outing following dinner, such as a walk. Or you may need to keep in mind if there is a potential for intimacy at the end of the night.

Keep in mind where you will be throughout the evening. Will you be in a place where you won’t have access to a bathroom, or do have access, but have concerns about odor? There are certain foods or drinks that will cause an increase in output, gas and a potential embarrassing smell. Check out tips and tricks for diet here, but keep in mind that everyone will react differently; so you will need to try things out. I don’t entirely follow all the “food rules”, but I do limit carbonated drinks and monitor how much I eat. I’m lucky, my stomach can handle most foods. I do not get blockages and am not too concerned about potential odors.

If you fear odor that may accompany emptying your pouch, I recommend carrying a small bottle of odor eliminating toilet spray. You spray it in your toilet before you empty, and it helps hide the odor. Now that doesn’t solve the problem entirely, but in combination with a lubricating deodorant you can empty with more confidence.
If you do end up having a little more output than expected without access to a bathroom, I find using one of the Ostomysecrets® wraps to both hide the potential bulge from your shirt or leverage extra support in case you fear an accident. The wrap can also prevent self-consciousness if your shirt “accidentally” comes off during the date or evening.

If you are hoping to avoid the bathroom altogether, keep in mind, how much you eat will also drive output. If you eat a lot, then you could potentially be in and out of the bathroom all night.

Bottom line: plan ahead thinking about where you’re going, what your plans are and you’ll be able to face the evening with even more confidence!
~
Randy Snyder

 

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.

River Rafting Camping Trip with an Ostomy

, , ,

My name is Jodi Capobianco, I am 54 years old and have a permanent ileostomy.  Five years ago I was 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.

Ostomy Leaks and Skin Breakdown: Video Discussion

, , ,

Why they Happen and What to do

Elaine O’Rourke and Ostomy Nurse and Phoenix Magazine columnist Anita Prinz discuss ostomy leaks, reasons why they happen, what to do and how to help with skin breakdown. There is lots of valuable information in this interview for even those who have had their ostomies for many years. Elaine has had her ileostomy since 2005 due to Crohn’s disease and has had her fair share of leaks over the years until finding the right pouching system for her. If you are having persistent leaks then you should always consult with an ostomy nurse who can help find a solution for you.

You can find Elaine on Facebook and her “3 simple ways to overcome fears about your Ostomy” program at www.ElaineOrourke.com/ostomyprograms/

Every Ostomate Has a Voice Worth Hearing

, , , , , , ,

Saturday, October 3rd, 2020 marks the 10th anniversary of Ostomy Awareness Day. In partnership with United Ostomy Associations of America (UOAA), Hollister Incorporated is proud to stand with the entire ostomy community in celebration. Every ostomate has a voice worth hearing and we aim to embody ostomy confidence of our worldwide community with #OstomateVoices.

Spread Positivity and Share Your Voice

We’re connecting and empowering our worldwide ostomy community to share their own unique experiences—their challenges, their achievements and the joys of their daily lives. Share your words of encouragement that have helped you along your ostomy journey. Your story might help someone who might be struggling. Using your words, we’ll create a unique social card that you can share with your friends, family, and community. Share your voice here!

Join Us for a Virtual Cooking Class

Join us for a virtual cooking class on October 3rd with private chefs Ryan Van Voorhis, a fellow ostomate, and Seth Bradley of Nude Dude Food™, one of Chicago’s most sought after private dining and catering services. Register today to connect with others in the community and cook a delicious meal. Register today!

For more resources on nutrition with an ostomy, check out UOAA’s Food Chart or download the “Eating with an Ostomy” Nutrition Guide.

Show Off Your Stoma Sticker

Stoma stickers are a great way to raise awareness, start a conversation, or show support. Order your free Stoma Stickers in time for Ostomy Awareness Day, shipped anywhere in the US.

Share a photo or video of your Stoma Sticker on social media using #StomaSticker to be part of the conversation. Or show off your Stoma sticker while running in your virtual Run for Resilience Ostomy 5K and share how you celebrated #OstomyDay2020.

Share your #OstomateVoices and personalize your next Instagram or Facebook Stories with the Hollister “Ostomate Voices” digital stickers. It’s easy – search “Ostomate Voices” in the GIF library when creating a Story and you’ll find the whole collection, including a UOAA lifesaver and Stoma Sticker!

For more resources and interactive ways to get involved, visit Hollister.com/ostomyawareness.

Editor’s Note: this blog post was provided by Hollister Inc. the exclusive Diamond Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization.

Keep pushing forward – Ostomy Awareness Day 2020

, , , ,

It can be hard to talk openly about living with an ostomy, but at Coloplast, our mission guides us in our everyday work and our employees embody a passion around hearing real-life stories from people with intimate healthcare needs. We have gotten to know Joel through his story, his resilience to keep fighting, and we are proud to stand with the ostomy community in raising awareness of ALL people living with an ostomy.

Join us, Joel and ostomates across the nation in participating in the Virtual Run for Resilience for the 10th Anniversary of Ostomy Awareness Day (OAD) on Saturday, October 03, 2020.

Joel’s Story

I was diagnosed with Crohn’s disease at 17 years old. Nine years later I had a very bad flare up that put me in the hospital fighting for my life. When the doctors first told me that the best option was to have ileostomy surgery, I was so upset but I was in so much pain I was hoping that it would make me feel better. When I finally woke up from surgery and realized I had an ileostomy – I cried. I didn’t even want to look at it. It took some time, but I got used to it, my stoma saved my life.

After surgery, the scariest thing for me was not knowing how I was going to move forward in life with an ileostomy. As soon as I got out the hospital, I began to work out every day, even if it was for 25-30 minutes. In 6 months, I was able to build my strength up enough to complete and graduate an intense 4-month police academy. Today, I continue to do what I love and recently completed my personal training certificate.

I am telling my story to tell you that you should never give up on something – even if it seems impossible. Stay strong, stay positive and keep pushing forward!

I am excited to walk, run with you all on Ostomy Awareness Day for the Run for Resilience and hope you will join in with me! I created this video, “Tips on Running with an Ostomy” for you all. I am always looking to connect, and support others so feel free to reach out to me if you need help, want to chat, or just need some support. You can find me on Instagram at @crohnically.fit

Join us for the Run for Resilience

Having an ostomy should not hold you back from participating in the run/walk. Our Coloplast® Care team is here to support you if you want to chat, just give us a call at 1-877-858-2656. We also have resources on our website on sports and exercise.

Coloplast is proud to be a part of the effort to build awareness that ostomies are lifesavers, visit our website to request a free sticker for OAD and join our contest for an opportunity to win some swag! We can’t wait to run/walk with you on October 03! Make sure to follow us on Instagram @coloplast.us for updates leading up to the event!

 

*Joel is a Coloplast product user who has received compensation from Coloplast to provide this information. Each person’s situation is unique, so your experience may not be the same. Talk to your healthcare provider about whether this product is right for you.

 

Editor’s Note: this blog post was provided by Coloplast Corp, a Gold Sponsor of UOAA’s annual Run for Resilience Ostomy 5K events that benefit UOAA, a 501(c)(3) nonprofit organization

 

Diverting Diverticulitis

, , ,

By Ellyn Mantell

From the time I can remember, constipation was always an issue for me. I assumed I was doing something wrong to cause it. It turns out that I was born, like so many, with a redundant foot of bowel, which in layman’s terms, means that my colon was not only oversized, but a portion of it went in the wrong direction. Here is what I mean…the colon or large intestine ascends on the right side (ascending colon) and goes across the abdomen (the transverse colon) and descends the left side (the descending colon.) That is exactly the path that stool takes in its journey to leave the body. My redundant foot of bowel meant that the transverse colon actually went up at the connection to the descending colon, for a foot, before heading downward, so stool had to travel against gravity before leaving my body.

My first barium enema was when I was 10 years-old, and although we didn’t know what the problem was, I was always told at that time, and every subsequent test, that my sluggish bowel would be an issue for me, (and it truly was, until my ileostomy 6 years ago). So, it came as no surprise that I was also told, each colonoscopy or c-t scan, that I had severe diverticulosis, which could become diverticulitis, a problem that often requires medical intervention.

The diverticula are small sacs that form along the mucosal lining of the colon, often due to straining to move stool through the intestinal tract, which puts pressure on the intestinal wall (which causes the bulging). This issue can worsen with age, medications and other causes of constipation. If the diverticula are inflamed or rupture, serious infection can result, which then is called diverticulitis.

While diverticulosis doesn’t cause discomfort, diverticulitis can be terribly painful, cause fever, constipation or diarrhea, nausea and fatigue. Several in our Ostomy Support Group have had resections of their colon and ostomies due to diverticulitis. Some choose to be reversed after the several weeks of healing necessary to allow the connection in the intestine to do its job. Others choose, instead, to live with their ostomy, which offers them freedom from constipation.

There are ways to avoid diverticulitis, and they are manageable for most. Eating a high-fiber diet rich with fruits and vegetables and whole grains is a great place to start. You may remember that I have also mentioned that is a smart way to enhance our immune system, which may help fight Covid-19. Add more fluids, and if possible, pitted watermelon, for an extra kick of fluid. These tips will soften waste and help it pass more quickly through your colon. That may reduce the risk of diverticula becoming inflamed. Also, exercise and maintaining a healthy weight are very helpful.

Many physicians recommend reducing red meat; some used to say avoid nuts and seeds, although that restriction seems to have changed. As I tell others with an ostomy especially those with an ileostomy, if you eat nuts and seeds and fresh fruits and vegetables, which are healthy and filling, please chew, chew, chew, since that is the best way to avoid inflammation or a blockage.

Many medications can impact motility of the bowels, so be mindful to changes when you add or delete medications, and please address with your physician any concerns. And most important, if you notice any changes, pain, distention, nausea, vomiting or generalized discomfort in your abdomen that has you concerned, do not wait. Speak with your physician and consult UOAA’s blockage card and don’t be hesitant to go to the Emergency Room if needed. Much can be done to not only make you feel better, but to prevent a manageable situation from becoming extremely serious!

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

Vlog: Prolong Summer Pouch Wear Time

, , , ,

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 

Get Moving for Ostomy Awareness

, , , , , , ,

The Annual Run for Resilience Ostomy 5k is Coming to You!

 

It’s a good year to celebrate your life. To get outside in the fresh air and get moving again if you can. To speak out and make noise that “Ostomies Are Life-Savers” and not something to be stigmatized or feared.

To keep everyone safe and adhere to any local COVID-19 guidelines all Run for Resilience Ostomy 5k events are being held virtually this year. That just means you can run, walk or roll wherever you want (even inside on a treadmill) and still be a part of Ostomy Awareness Day activities on Saturday, October 3, 2020.

We’ll be celebrating an ostomy community that has shown resilience long before “resilience” became the buzz word of the year. With your registration for the Worldwide Virtual Ostomy 5k, we’ll mail you a race bib, unique 10th Anniversary Ostomy Awareness Day Race T-Shirt and special stickers and sponsor giveaways. If you want to show your state pride and live in Alabama, Arizona, North Carolina, Idaho, Michigan, Pennsylvania, Oregon/Washington please consider supporting your local “Virtual 5k event.” You may have the additional opportunity to pick-up a race bag along with the t-shirt and giveaways at a safe location organized by the local race directors. (MI Run participants T-Shirts, race bags and materials will be mailed.)

You don’t have to be a runner or walker to support these charity events. This event has traditionally been a critical fundraiser for UOAA and the advocacy, resources, and educational materials provided for anyone in need of ostomy or continent diversion surgery. The canceling of in-person events will be a fundraising challenge we’ll need help to overcome. 

Please consider donating or starting a fundraiser like Catherine Salisbury Catherine shared her inspiring story on the fundraising page she created on the Virtual Run Sign-Up website.  

I was diagnosed with a hereditary colon cancer disease, Familial Adenomatous Polyposis (FAP), in 2015. This diagnosis both saved and drastically changed my life. In 2016 I had a total proctocolectomy surgery with a temporary ostomy for three and a half months.  In 2019, desmoid tumors were constricting the blood flow to my j-pouch so I had to have it removed and had a permanent end-loop ileostomy created.  It has been an incredibly difficult journey, but I am beyond blessed with an amazing support system. My family and friends have kept me going through this whole crazy journey. I am beyond grateful for them.

I hope to raise money to help other ostomates who do not have the same incredible support team I have. -Catherine Salisbury

You may be surprised by how supportive others will be if you share your story and create a fundraiser. Catherine increased her fundraising goal to $1,000 after the response from her supportive friends and family helped her reach her original goal.

We also have incentive gifts featuring the “Ostomies Are Life-Savers” logo for those who reach goals of $250 and $400 and anyone who donates or raises $30 or more will receive a special bandana for themselves or their pet.

Starting a Group/Team is also a great way to connect with friends and family wherever they live so they can show support for your journey.  Groups of WOC nurses can claim bragging rights for regional participation (the team WOC This Way in Indiana is leading) and co-workers may have fun in challenging other departments. New this year we are excited that supporters of WOCN Society’s Fund the Future program are coming together for the We All Walk Together Team.

UOAA Affiliated Support Groups such as the one in DuPage County, Illinois looks forward to gathering members for a virtual event every year and are forging ahead with a team and fundraiser even as they anticipate COVID restrictions will not enable them to all meet up together at their usual park location. The year’s Exclusive Diamond Sponsor of the Ostomy 5k, Hollister Incorporated, is also planning another employee-wide event and we expect to hear about other sponsor events soon.

Ostomy Support Group of DuPage County at their Virtual Ostomy 5k in 2018, the group will be back this year with social distancing guidelines in mind.

For some extra motivation consider starting a couch to 5k training group with some friends to get ready and feel great in October. 

Wherever you choose to run or walk be sure to let others know about it to truly raise ostomy awareness. Take pictures of yourself doing your virtual race and email them to us or share/tag them with our public Facebook page. Hashtag your photos or stories #RunforResilience and we may repost on Twitter or Instagram.

We are very grateful for our national sponsors who help offset the costs of the events and believe in this mission. They have stepped up during this difficult year and remain committed to this event and the cause of ostomy awareness. 

Rally your friends, co-workers, and family to the cause of ostomy awareness. People are still choosing death over life with an ostomy and it’s up to you to help show the world what people living with an ostomy are really capable of.  

 

Register for a virtual event near you or for the worldwide Virtual 5k. Sign-up before 9/11/20 and save up to $5. The special price of $17.50 includes a special 10th anniversary of Ostomy Awareness Day technical t-shirt (Michigan is $22.50 shipping included). Worldwide Virtual Event Registration is recommended for those not near one of our local virtual events t-shirt packet pick-up locations.

Click Here to Register

Click Here to Donate or Start a Fundraiser

Swimming with an Ostomy

, , , , ,

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.

The Heat is On! Hydrate with an Ostomy

, , , , ,

By Ellyn Mantell

While walking this morning it occurred to me that for many Ostomates, the heat is very challenging. Ileostomates, in particular, are prone to dehydration because our stoma is always productive. In Mother Nature’s inimitable creation, the colon, or large bowel, is responsible for absorbing fluids and allowing them to be reabsorbed into the body. Since ileostomates either no longer have a colon or it is no longer being used, the precious fluids are flushed from the body through the stoma. Hence the rapid filling and refilling of the pouch, which can be worse in the heat.

Naturally, drinking water is advised. UOAA’s new ostomy nutrition guide recommends you “Make a habit of drinking water throughout the day. At the same time, limit or avoid beverages with added sugars and artificial colors and sweeteners.”  Many of us may have difficulty drinking enough to support our anatomy, so we need to be mindful of symptoms that we are lacking the hydration/dehydration balance.

Some symptoms of dehydration include headache, fatigue, dark or decreased urine, lack of concentration, dry mouth, feeling disoriented, shortness of breath, dry skin, stomach cramps. Additionally, leg cramps, loss of appetite, drowsiness, tingling in fingertips and muscle weakness are all concomitant to dehydration.

Learning to live with the chronic dehydration possibility presented to ostomates is certainly attainable. For me, since I do not have a high blood pressure issue which might preclude adding salt, it means adding it frequently at meals. It is strange to servers at restaurants when I ask for the salt shaker, and many have asked if I mean the pepper shaker? We have become a salt-resistant society. But there are those of us who need it for our fluid balance. Additionally, I have a handful of a salty snack before bed, such as pretzels, since nighttime muscle cramps can be very painful and cause sleep deprivation. I keep a bottle of tonic water in the refrigerator, as well as a jar of pickles for those times when nothing else works. For muscle cramps I recommend an over the counter foam moisture. The manufacturers recommend using it prophylactically at night, but I have found it usually very fast-acting when I have foot or leg cramps, so I apply as needed.

Many Ostomates swear by sports drinks like Gatorade, but truthfully, although I have a bottle in the refrigerator at all times in case of fever, I find it difficult to drink. However, if presented with the option of drinking it or winding up in the Emergency Room for fluids, I will imbibe gladly! It’s recommended you dilute sports drinks to reduce the sugar content as well. At some of our Support Group meetings I have heard of many different electrolyte balancing drinks and powders, so you may find one that works for you.

UOAA recommends you drink 8–10, eight-ounce glasses of water/fluid daily. If you have a urostomy this also helps prevent UTIs and keeps urine diluted. Concentrated urine also can cause odor.

View UOAA’s Eating with an Ostomy Guide for more hydration tips such as avoiding excess caffeine, eating foods with a higher water content and sipping your liquids slowly.

It has been recommended that Ostomates drink more than simply water, since it flushes through the system and little gets absorbed before it exits through our pouch. Drink with meals, since food slows down the transport of fluids. Bring fluids with you when you are out and about, since being busy may cause us to forget the responsibility we have to stay hydrated. Lastly, in addition to feeling awful when we are dehydrated, being in that state puts a great deal of pressure on our kidneys, and can lead to kidney failure and lightheadedness, which can lead to falling.

Although this sounds ominous for summer fun, being mindful and smart will help us to relax and enjoy ourselves…after all, with the Covid experience, we have learned to grab the good and be grateful we are as healthy as we are!

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. You can follow her personal blog at morethanmyostomy

Ostomy Diet Guidelines After Surgery

, , , ,

Chances are you will be able to return to your normal diet not too long after your operation. It is good to keep in mind that foods that were good and healthy for your body before your operation are still good for you. A well-balanced diet is recommended for most individuals.

Although your ostomy nurse more than likely will give you tips and advise you on your health and diet, here are some alternative helpful suggestions for maintaining a proper diet after your ileostomy or colostomy surgery.

Start Small

Ease your way back to proper nutrition with small quantities of food. It is recommended to eat 3 or more times per day in smaller quantities and portions. Try to eat these meals at the same time each day to help regulate bowel movements. Eating more frequently and in smaller quantities will help aid your body’s ability to process food and help with unnecessary gas.

For the first several weeks after your surgery, eating simple and bland soft foods will be easier to digest. Keep in mind that chewing your food well also adds to the ease of digestion – the more broken up it is, the easier it will be to process. Take your time with introducing high-fiber foods back into your diet as these will be harder to digest and can cause blockages.

If you are trying new foods it is advised to try them slowly and one at a time. This will help you to have a better understanding of how your body works with the new foods and if any will cause excess gas, constipation, strange odors, or diarrhea. Slowly incorporate them into your diet and make note of how your body responds to them. Remember that every body is different and what affects someone else may not affect you in the same way, this is why it can be helpful to keep a journal or diary of how your body responds to different foods.

Drink Lots of Liquids

It is important to drink lots of liquids with an ostomy. If you have an ileostomy, even more specific ileostomy dietary guidelines will be helpful. Dehydration can happen as you lose more fluids daily after an ileostomy, due to the fluid not being reabsorbed into the large intestine. Make sure to hydrate even more on hot and humid days or if you are participating in active sports. (Sports drinks and other high electrolyte drinks can help with this.)

Coffee and tea are fine to drink, but water and juices are still better sources of liquid, so be careful not to use coffee or tea as a substitute for water.

Can I Drink Alcohol With my Ostomy?

Alcohol is fine in moderation, you may want to try one drink (or even a half) and wait and see how it affects your body. Like other carbonated beverages, beer may cause extra gas and uncomfortable bloating but every body is different and what affects one person, may not affect you in the same way.

Ostomy Problem Foods

Even though you can still enjoy most of the foods you loved before surgery, there are some foods to be aware of after your ostomy, specifically foods that are hard on digestion and can cause blockages. The following is a list of common foods that can cause problems, as they don’t break down easily:

Nuts
Seeds
Popcorn
Dried fruit
Mushrooms
Raw-crunchy vegetables

Eat these foods in small quantities and be sure to chew them well. If you think you have a food blockage, you should call your doctor or ostomy nurse. Having an ostomy certainly doesn’t mean you have to completely change your diet. By steering clear of a short list of problem foods and making sure to stay hydrated, you can get back to enjoying the foods you love.

Editor’s note: This article is from one of our digital sponsors, Coloplast. 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.

Scott Steehn’s Story

, ,

Finding Hope in the Stories of Others

By Scott Steehn

All stories have a beginning, and mine is no different. It started on a cold, slate-colored February day in Erie, Pennsylvania in 1992. I was a successful standup comic who had headlined clubs and theaters in all 50 states and seven foreign countries. I was recently engaged to my soulmate, and we were making plans for a big October wedding. I was just finishing up a great week at a terrific comedy club in Erie and, as I prepared for my two shows on Saturday night, I felt like everything couldn’t have been going any better. But, in just 12 hours, none of those things would matter.

It started when I was onstage during the first show. I began having abdominal pain on my left, lower side. It wasn’t a huge pain and mainly felt like a had a fairly intense need to move my bowels. I finished up my show and made a beeline to the restroom. And…nothing happened. Nothing at all. The NEED was still there, and, in fact, it was getting worse. I, of course, had been constipated before, but this felt somehow…different.

I did my second show, but the pain was now almost unbearable. I headed back to my hotel, stopping only at a drugstore to pick up a laxative. I had convinced myself it was just constipation and had even assigned the blame to the shrimp dinner I’d had the night before. “Fresh Shrimp” in February…in Erie?! What did I expect to happen?

I took the laxative. And I waited. And tried. And waited some more. And then the pain got bad. Real bad. I could barely walk and couldn’t move without intense pain shooting out from my left side. Now I had a new theory. Burst appendix. This was before the days of Web MD, and I was limited to only what my imagination could conjure to freak myself out. So, not wanting to die a ridiculous death in the Erie Hilton, I called a taxi and headed to the hospital.

They got me into an exam room in short order. The doctor examined me and, taking advantage of his fancy medical degree, immediately eliminated appendicitis. So much for that. He then told me he had an idea what it was but wanted an MRI to confirm the results. A quick trip through the “donut of doom” confirmed his initial diagnosis. It was something called diverticulitis. He explained how we all have small abscesses in the colon and how they usually don’t cause any problems. Sometimes, however, those abscesses become infected. It causes horrible pain and constipation, and once it gets this bad, it has to be treated with antibiotics and mass quantities of fluids. I spent a painful week in the hospital and was discharged with very specific instructions on how to adjust my diet and lifestyle to prevent a recurrence. I thanked all the staff for the great job they did, signed some papers, checked out…and promptly ignored his instructions for the next 20 years.

Christmas Eve, 2012. My wife has had enough. The final straw came when I was unable to make it upstairs for the family gift exchange. As soon as it was over, she came down and told me we were going to head to the emergency room. I didn’t have the energy to argue. Plus, I knew she was right. I’d been feeling terrible for almost three years. Something was definitely not right. It seemed like it emanated from the “diverticulitis spot” that I had become intimately familiar with due to the flare-ups I suffered through two or three times a year. The only confusing part was I had undergone a colonoscopy six months prior and had received a clean bill of health. Only much later did I learn that I had received a negligent result. My doctors all agreed- there was no way my problem could have been missed.

I should have known I was in trouble when, after the emergency room doc saw me initially, he asked me if I’d like anything for pain. I jokingly said, “Sure, how about some morphine?” He immediately replied, “Okay, we’ll get that going for you.” Uh oh. A little later he told me I had a blockage that had been caused by a buildup of scar tissue from the repeated flare-ups of diverticulitis. They needed to get rid of the infection and then remove the two damaged sections of bowel. Surgery was scheduled for New Year’s Eve. Merry Christmas and Happy freaking New Year!

I spent the next week in a morphine haze. I met my surgeon, a brilliant young lady who looked impossibly young for someone with that much schooling. She explained that they were hoping to remove the damaged sections laparoscopically. It was a relatively simple procedure that would require a couple of days of recovery in the hospital, a week or two at home, and then back to my normal life. The alternative would be invasive surgery, much longer recovery time, and, while the healing took place, I would need to have a colostomy. Due in part to my opiate fog and also due to my refusal to accept reality, I was 100% convinced everything would be done laparoscopically. No worries.

The first thing I noticed when I came to was something in my throat. Something huge and foreign. As my world blinked into focus, the nurse was there to explain to me that the damage was much worse than they had anticipated. Full surgery had been performed and I was going to be in the hospital for a while. The drugs were very helpful in allowing me to deny exactly what exactly that meant. I was much more concerned with getting the tube out of my throat and the catheter out of the other end. That cavalier attitude about my situation would soon change.

The nurses and staff were great. They changed my colostomy bag for me and allowed me to STILL not grasp my situation. That all changed when I met the ostomy nurse. She was tasked with teaching me the intricacies of daily life with a colostomy. Reality came crashing through the door when I spent 30 minutes hiding in the restroom in tears unable to change my bag. I can’t do this! This isn’t fair! (Conveniently forgetting the 20 years I had spent ignoring my doctor’s orders) Gathering myself, I sucked it up, and FINALLY was able to do it on my own. I was discharged and sent home to recuperate and heal for 30 days before heading back to the hospital for takedown surgery.

I’d like to tell you a story about how well I adjusted. About how I was brave. About how I was thankful to be alive. About how I now appreciated my friends and family even more. About how I would now refused to take all the beauty of life for granted. That’s the story I’d like to tell. But I can’t. It would be a lie. Even though none of you know me, I promised myself I would be 100% honest about my journey. Warts and all. So here goes.

It was awful. I hated every minute of it. I thought having a colostomy was gross. And hard. Life wasn’t fair. NOTHING was fair. I can’t do this. There were the usual indignities. Accidents. Broken seals. Excess gas. I was in hell. Never for one moment did I think how my situation affected those around me. How my actions and attitude affected my family, and, my wife in particular, who only wanted me to get better and get back to being the man she married. As an added bonus, I was also taking 12 Oxycodone a day for pain, and, rightly suspected, now had a raging opioid addiction. My day consisted of sleeping, crying, bitching at my family, thinking about death, and dealing with my new, hated, appendage. Day after day. Rinse, lather, repeat.

Then, one day while noodling around on the internet, I found UOAA. I started reading about my condition. And I started reading other people’s stories. I found out just how many dealt with this particular challenge. I was stunned. And the more stories I read, the more my respect grew. People who had to deal with this for years. For decades. Tears streamed down my face as I read their stories. I’d love to tell you everything changed that day. How my attitude changed overnight and how I became Mr. Positivity. Alas, it wasn’t that simple.

What DID happen, is I became embarrassed about my actions. I had always prided myself on being a tough guy who dealt with problems head-on. The more I read on ostomy.org, the more I knew this was a lie.

Every day I read the stories of real heroes. Men and women who possessed the biggest superpower of all, the ability to live a normal life despite adversity that was currently bringing me to my knees. To say they inspired me, would be an understatement. Closer to the truth would be, they saved my life.

They gave me practical advice, “insider tips” on everything from bathing to sex, and something I hadn’t felt in a long time. They gave me hope. I never posted on the UOAA discussion board. Hell, I don’t think I even registered. Due to my “temporary” status, I really didn’t think anyone wanted to hear my whining. If everything went well, my life would go back to “normal,” while these people would continue to lead quietly heroic lives day after day, year after year. I didn’t feel worthy. And I still don’t.

That’s my story. Sure, there’s more, including an unsuccessful takedown, massive infection, emergency surgery, and an ileostomy for a few more months. There was a wound vac, and an in-home nurse to change my dressing daily. And, of course, after 6 ½ months of daily opioid use, I still had to deal with that King Kong-sized habit. Yet, in the end, I was okay. It probably took almost two years to feel like me again. And even that isn’t completely accurate.

I recovered, I felt better physically, but “myself” was different. I was more appreciative, more humble, and more thankful. I was well, but I’d never be the same.

So, thanks for reading. Thanks to Ed Pfueller for giving me an opportunity to share my story. Thanks to the whole team at UOAA and, for that matter, all of the sites designed to educate, inform, and help everyone on this particular journey. Lastly, more thanks than I could ever express to all the men and women who bravely shared their stories through blogs and forums. Thanks for your bravery. Thanks for your humor. And thanks for giving me the courage to understand and accept my condition with, what I hope, was grace and determination that would make you all proud. God bless each and every one of you and may your lives be full of the joy and love that you so richly deserve. I am forever in your debt.