Tag Archive for: ileostomy

Kidney Stones and Ileostomies

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By Joyce Moss, RN, MS, MNM, COCN, CWCN

Kidney stones develop when crystals anchor to plaque formations or crystalline deposits develop within the inner medullary collecting ducts of the kidneys. Research has shown that kidney stone formation is a known complication of inflammatory bowel diseases and the surgical procedures used to manage these conditions.

Ileostomy surgery significantly increases the risk of kidney stones primarily due to fluid and electrolyte losses. Patients with an ileostomy lose substantial amounts of fluid through their stoma, which can easily lead to dehydration. When dehydration occurs, urine becomes more concentrated, increasing the likelihood that stone-forming substances will crystallize.

Concentrated urine leads to supersaturation, meaning that minerals such as calcium, oxalate, and uric acid are present at levels high enough to form crystals. These crystals can attach to plaques in the kidneys or plug the tubules and gradually grow into kidney stones.

Changes in Urine Chemistry After Ileostomy

The colon normally plays a significant role in reabsorbing water, sodium, and other electrolytes. When the colon is removed or bypassed during ileostomy surgery, this reabsorption is lost. As a result, the kidneys often produce urine that is:

  • Low in volume
  • Acidic (low pH)
  • Low in sodium and calcium

This combination creates an environment that favors kidney stone formation.

Types of Kidney Stones Common in Ileostomy Patients

The two most common kidney stones seen in patients with ileostomies are:

Calcium Oxalate Stones

  • These are the most common type of kidney stones overall.
  • Dehydration and concentrated urine increase calcium oxalate supersaturation.
  • Excess dietary sodium increases calcium excretion in urine, further raising risk.

Uric Acid Stones

  • Uric acid levels in urine are naturally higher than oxalate levels.
  • When urine pH is low (acidic), uric acid crystallizes rapidly.
  • Unlike calcium oxalate stones, uric acid stones do not attach to plaques or plugs; they form freely within the urinary tract.

Management Strategies

Hydration Goals

Adequate hydration is the single most important strategy to reduce kidney stone risk.

  • A minimum urine output of 1,200 mL per day is needed to protect kidney function.
  • For individuals with a history of kidney stones, urine output should be increased to at least 1,500 mL per day.
  • If tolerated and not contraindicated by a physician, an ideal goal is fluid intake of 2-3 liters/day based on age, climate, activity level, and health conditions.

Monitoring urine output, not just ostomy output, is essential. Urine output and color are more reliable indicators of kidney hydration and stone risk.

Dietary Considerations

  • Limit oxalate-rich foods, including: Spinach and other leafy greens, Rhubarb, Almonds, Beets, Navy beans, Okra, French fries and baked potatoes, Soy products, Strawberries, Tea, Chocolate
  • Ensure adequate calcium intake, as calcium binds oxalate in the gut and helps to reduce oxalate absorption in the urine.
  • Limit excess sodium intake, as high sodium intake increases calcium excretion in urine.
  • Reduce animal protein and increase plant-based protein sources, which can help lower acid load and reduce uric acid stone risk.

Monitoring and Follow-Up

  • Regular medical follow-ups and urine testing are important to assess kidney function and stone risk.
  • Both ostomy output and urine output should be monitored routinely to ensure adequate hydration.

Prevention Strategies

Daily Prevention

  • Stay well hydrated throughout the day.
  • Use oral rehydration solutions when needed.
  • Follow a lower-fiber diet if recommended to help manage high ileostomy output.

Medication Considerations

Consult your physician if you experience vomiting, infection, or high stoma output—especially if you routinely take medications such as:

  • Blood pressure medications
  • NSAIDs
  • Diabetes medications
  • Kidney or heart medications
  • Diuretics

Ask if and when these medications should be temporarily paused and when they should be safely resumed.

When to Seek Urgent Medical Care

Seek immediate emergency care if you experience:

  • Drowsiness or confusion
  • Muscle cramps
  • Rapid heart rate
  • Ankle swelling
  • Severe abdominal pain or low back pain
  • Foul urine odor
  • Blood in urine
  • Frequent or painful urination
  • Nausea, vomiting

Key Takeaways

  • Ileostomy patients are at increased risk for kidney stones due to dehydration and acidic, low-volume urine.
  • Calcium oxalate and uric acid stones are the most common types.
  • Maintaining adequate urine output is essential for prevention.
  • Diet, hydration, and medication awareness play a critical role in kidney protection.
  • Early recognition of warning signs can prevent serious complications.

 

For more on the importance of hydration and diet for your ostomy type visit UOAA’s Diet and Nutrition Page and Eating with an Ostomy Guide. 

 

References

·Ileostomy and Kidney Stones, Kidney Stone Program, University of Chicago, High Output Ileostomies: Preventing Acute Kidney Injury, Practical Gastroenterology, Maintaining Kidney Health with an Ileostomy or Internal Pouch, IA Support

Joyce Moss, ADN, BSN, MNM, MSc Wound Healing & Tissue Repair, RN, CWS, CWCN, COCN

January 13, 2026

 

 

Squid Game: The Challenge Contestant Embraces Life with an Ostomy

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My ileostomy and how it gave me the confidence to participate in such a wild adventure!

By Kathy Kelly #258

Squid Game: The Challenge Season 2 streams on Netflix starting November 4

At age 35, while pregnant with my 4th child, I was diagnosed with ulcerative colitis. The symptoms appeared out of nowhere during my pregnancy and unfortunately, because I was pregnant, there was very little that could be done to manage my disease.  After giving birth to my daughter, I immediately sought medical intervention to address my UC symptoms, but relief was terribly elusive.  I went from being an active, social, and extroverted person to not wanting to leave my house.  Not only did I have little to no control or predictability of my colon, but I also struggled with intense cramping, mouth sores, and copious blood loss.

Kathy Kelly is featured on the poster of Season 2 of Squid Game: The Challenge on Netflix.

Over the next 18 months, I tried several different “Biologics” and endured multiple rounds of steroids.  Each new medicine brought with it the hope of relief, but that hope was never realized as I never experienced meaningful healing.  I spiraled into thinking and feeling like I would never be healthy again – UC was now dictating the terms of my quality of life.

After nearly 20 months of a losing battle with UC, my doctor made me aware of the “nuclear” option – I could have my colon removed and be fully healed of UC.  In hindsight, it seems so obvious, but at the time, I remember shuddering at the thought.  Yes, my UC was awful and yes, I was spending all of my waking hours desperately trying to manage my symptoms.  But having “a bag” felt like it was way too extreme.  My husband and I discussed it and I met with other GI docs to discuss the process and the more I learned about it, the more the lifestyle was normalized for me.  I found people online that shared their experiences and one thing stuck out to me – they had control.  For nearly two years at this point, I had completely lacked control.

So, in May 2021, after 22 months of suffering in relative silence with UC and with the support of my medical team, I had my colon removed and was given an ileostomy.  While there was certainly an adjustment period – learning how to change my bag and care for my stoma – the immediate relief was shocking.  However, it wasn’t all positive.  Even some of my well-intentioned nurses would say things like “hopefully, this is just temporary and you’ll be back to normal soon”, and I remember feeling like neither my UC nor my new reality with an ileostomy was normal.  I quickly overcame that because of the obvious improvements to my health and quality of life. I made the decision just 4 months later to make my ileostomy permanent by having my rectum removed.

Having a permanent ileostomy has certainly been a journey – I had a peristomal hernia that required an additional surgery and I’ve experienced all of the typical “first timer” experiences – catastrophic leakages while on a date or at a friend’s house.  But, I can stay with completely certainty that my ileostomy has given me my life back.  I’m as active as ever.

I’m engaged in relationships with my husband, children, family, and friends.  I’m excited to be pushed out of comfort zone again – and to that end, I recently participated in Season 2 of Squid Game: The Challenge on Netflix!

We watched the first season of Squidgame Game: The Challenge as a family and we loved it! My husband made a silly comment to the kids saying “your mom would be able to kill all of those players” and when the kids saw that they were casting season 2, they begged me to apply. I just assumed my application would be lost in the thousands of emails, but fortunately something caught their attention!

It was an incredible experience that involved international travel, intense competition, and long hours of uninterrupted filming. My doctor even said limited bathroom breaks would probably be easier for me than most!

If I was still dealing with UC, I would’ve never trusted my body to take on something this challenging and stressful!  My ileostomy has restored my health, my energy, and my control and I’m incredibly grateful for it!

I think most of the friends I made while filming would be SHOCKED to learn I have no colon-which I love! My bag saved my life, and it’s something I’m really thankful for.

My husband was my biggest supporter. His encouragement allowed me to engage and play without any of the self-imposed pressure that had been building for months with this big secret! Now that the show is airing it is no surprise to friends that I would do something like this because I am so competitive and love engaging with people!

 

Editor’s note: You can now cheer on Kathy Kelly on Squid Game: The Challenge Season 2 on Netflix. Win or lose, we know the resilience of an ostomate is not a force to reckoned with! United Ostomy Associations of America, Inc. (UOAA) is a 501(c)(3) nonprofit organization that supports, empowers, and advocates for people who have had or who will have ostomy or continent diversion surgery.

Panniculectomy with stoma re-site allows ostomate to thrive

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Colleen Reddington’s Ostomy Story

I’m interested in sharing my story because I know I am lucky to have a smart nurse practitioner for a sister who has advocated for me and helps me advocate for myself. When I was researching and looking for patients who had experienced the same non-cosmetic abdominal plastic surgery as I had, I was only able to find one person in the US. It has been so life-changing for me and I think others may benefit from it as well.

I was diagnosed with stage IIa rectal cancer in August 2019 after my baseline screening colonoscopy at 50. I wasn’t surprised; I knew something wasn’t quite right and hadn’t been for a while. That fall I underwent radiation treatment and oral chemotherapy in preparation for Low Anterior Resection surgery in January 2020.

My tumor was removed along with about 80% of my rectum and 13 lymph nodes. I had clear margins and a temporary ileostomy. I had a distinctly unfortunate ileostomy situation – I also live with epilepsy and I wasn’t immediately aware that the ileostomy was spitting out most of my epilepsy meds before they could metabolize into my system. As a result, I had six tonic clonic seizures in six weeks (usually I have one or two a year) and I was a bit of a mess. Add in severe skin breakdown due to seal problems and there was no way I could start cleanup chemo. We decided to reverse the ileostomy earlier than expected, after just 8 weeks, at the end of March 2020.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on.

I started what was supposed to be eight rounds of chemo in May. After two rounds I discovered I had a rectovaginal fistula. I opted to push through and deal with it later. As it was I had yet to regain bowel control and was dealing with many of the issues of LARS (Low Anterior Resection Syndrome).

I made it through four rounds of chemo before I was hospitalized for severe constipation. We decided I’d gotten all the good I was going to get from chemo and made plans to have surgery for a temporary colostomy in preparation for surgery to repair the rectovaginal fistula. The colostomy diverts everything, giving that area a break and hopefully ensuring greater success in repairing the fistula. Because the colostomy helped and in light of the incredibly high rate of recurrence for rectovaginal fistulas, I decided to keep it and pass on the fistula repair surgery.

But an interesting thing happened – when I got the colostomy my quality of life really improved! I no longer needed to wear a diaper. As time went on, I was still dealing with severe skin breakdown and problems getting a good seal. I have been overweight all my life and the fact my belly was soft with dips and valleys didn’t help. Additionally, because of carrying so much weight in my belly my colorectal surgeon was limited in the length of gut he had to work with and the stoma profile he was able to create.

My sister Madonna is a nurse practitioner and she suggested that I consult with a plastic surgeon to work with my colorectal surgeon. She thought perhaps they could do a panniculectomy and stoma re-site to give me a better landscape to work with. My colorectal surgeon had not done this before.

To make it even more unique, my sister was the charge nurse on the Trauma/ICU Step-down Unit when my colorectal surgeon was doing his residency over 20 years ago. She already had a plastic surgeon in mind (one she had sent her patients to) so when I approached my colorectal surgeon with this possible solution to my seal/skin issues he trusted her judgment and agreed to it.

Unfortunately, due to the pandemic my surgery was delayed twice. I had it in March 2022, almost a year after I initiated the process.

This has been nothing short of life-changing. Prior to this surgery, I had so much difficulty getting a good seal that I dared not even shower with the appliance on. I used so many extra products and changed it out at least twice a week. Now, I use just the flange and it lasts all week – even through being in the pool five days a week, some days twice; through showers after every pool session.

I do have a parastomal hernia that my colorectal surgeon minimally repaired while re-siting but getting rid of the excess belly fat has even helped with managing that. I feel like I have my life back, without the anxiety, stress, and physical pain of a low-profile stoma and inadequate seal can cause.

Prior to this surgery, my stoma was placed almost parallel to my belly button which added to the trouble. The panniculectomy removed 10 pounds of belly fat and my bellybutton too. The surgery is not done for cosmetic reasons so some of the steps a plastic surgeon will take in doing a tummy tuck (like preserving the bellybutton) are not done in a panniculectomy.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

I have the option to reverse my colostomy at any time, but I won’t – it essentially takes care of the rectovaginal fistula (which remains stable since getting the colostomy) and also gives me bowel control, which I never regained after my temporary ileostomy reversal. I realize it wasn’t a long time but with only 20% of my rectum remaining, I’m not confident I ever would.

In addition to my water aerobics routine (I go M – F every morning and again in the afternoon three or four days for a total of 8 – 9 hours per week).  I now shower also multiple times a day. I couldn’t do that before – I was only able to shower twice a week (when I changed my appliance) and resorted to sponge baths the rest of the time. Before, in addition to the flange and pouch, I used stoma powder, paste, and strips. Now I just need the flange and pouch and it gets me through a week. I’m saving money and creating less garbage. I’m also saving time. I used to have to let my flange “cure” for an hour before moving; now it takes about five minutes and I’m up and about.

Even with the seal/skin problems, I’ve always been grateful for my colostomy. But now I feel like my colostomy is really doing what it’s meant to do – helping me be in control and do whatever I want to do.

 

How to Stay Hydrated from a Marathoner with an Ostomy

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Ileostomate and athlete Collin Jarvis shares his recommendations for staying hydrated when you’re physically active. 

My name is Collin and I had ileostomy surgery in 2014 when I was on the Cross Country and Track & Field teams at the University of California – Berkeley. Staying hydrated was always an important aspect of my athletic performance, but after I had surgery, it became even more critical for me to drink enough fluids. Why? Because having an ileostomy can meaningfully reduce the body’s ability to get hydrated.1,2

Over the last decade I have continued to compete as an endurance athlete. Below are my top three tips for new ostomates looking to stay on top of their hydration:

Tip #1 – Make sure you are getting enough hydrating fluid throughout the day 

It can be challenging to keep up with fluid intake, especially when living with an ileostomy.3 I know this from personal experience!

Start by talking to your clinician about how much fluid you need on a daily basis. They will be able to point you to the best resources for your specific needs. General guidance is available online, but every body is unique. Keep in mind that the resources you come across online are going to be calculating fluid needs for a person who has all of their internal organs. So once you identify that baseline, ask your doctor if you need to increase your fluid intake above that level. In my case (i.e., as someone who is extremely active and has had their entire large intestine removed), I take in about 20% more fluids than what the average online calculator recommends.

Tip #2 – Be aware of when and how you are taking in your fluids 

Make sure to spread out the volume of liquid that you’re drinking as evenly as possible. In other words, take small and frequent sips throughout the entire day. This is important because our bodies are not perfectly efficient at absorbing the fluids that we put into them.

For example, you may have determined that you need around 100 ounces of liquids each day to meet your hydration needs. However, if you were to wake up in the morning and drink all 100 ounces right away, you would end up urinating most of that water out. In addition, drinking too much water at one time can dilute your body of the electrolytes it needs to properly absorb water which can exacerbate dehydration. Spreading out your fluid consumption evenly throughout the day is going to allow your body to work most effectively.

Keep reading on Hollister.com.

Hollister Incorporated is a proud sponsor of United Ostomy Associations of America and dedicated to delivering the highest standard of quality in ostomy care products. To learn more, visit www.hollister.com/ostomycare or call 1.888.808.7456.

 

References:
1. Justiniano, Carla F et al. “Readmissions With Dehydration After Ileostomy Creation: Rethinking Risk Factors.” Diseases of the colon and rectum vol. 61,11 (2018): 1297-1305.
2. Chen, Sophia Y et al. “Predicting the Risk of Readmission From Dehydration After Ileostomy Formation: The Dehydration Readmission After Ileostomy Prediction Score.” Diseases of the colon and rectum vol. 61,12 (2018): 1410-1417.
3. Absorption of Water and Electrolytes (colostate.edu) – http://www.vivo.colostate.edu/hbooks/pathphys/digestion/smallgut/absorb_water.html

 

Collin received compensation from Hollister Incorporated for his contribution to this article. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person. Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider. 

Resilience Story: Chris Seyler

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Chris Seyler joined the Phoenix (Arizona) Ostomy Support Groups during COVID times and met up with the group at a park ostomy meeting. Recovering from long term illness and recent surgery, he was ready to find his way back to normal life.

Chris was born in the Phoenix area. While growing up his parents taught him to be active in a team sport, exercise and stay away from bad habits in life.  Chris played basketball and ran track, being nominated for all state in both sports. Receiving a basketball scholarship, and motivated by teachers and coaches, Chris majored in Kinesiology and Science from The Master’s University and became a teacher.

While in college Chris met his wife Colleen, also a teacher. Their son, Nathan, shares his parents’ passion for teaching and athletics and was selected to be in a Disney running movie, MacFarland, USA. Father-Son teamed up to coach school teams in Track and Basketball, winning state Championships.

Following his passion, and inspired by his son, Chris started competing in more events. From 2003 to 2017 he competed in 5ks, 10ks, half and full marathons, triathlons, Ironman, and obstacle racing. It was after AZ IRONMAN 2013 that Chris was diagnosed with ulcerative colitis and started losing weight in 2017.  The next couple of years were tough; in and out of the hospitals for nutrition and dehydration and battling a bacterium in his colon.  Various medications and infusions did not help with easing the illness and emergency surgery was performed in 2019.

Weak from illness and surgery Chris retired from his full-time teaching job and put his running shoes aside.

As time went on and recovery was underway, Chris set a goal to run a 5k. Not able to keep up with his wife, she encouraged him to walk, jog, and run. Hydration was always important as part of Chris’ races, but not having a colon taught him he had to be even more diligent about it.  During Run for Resilience Ostomy 5k 2021, Colleen ran the race. Chris walked and rested with his dog…but he finished…and his passion was returning! While training he worked on improving balance and strength and was able to jog/run at the Arizona Run for Resilience Ostomy 5k in 2022. Chris will be participating this year on the Arizona Virtual Race Team as part of the 2023 Run for Resilience Virtual Ostomy 5k on October 7th.

Passionate about life after ostomy surgery; Chris is teaching part-time, is the Phoenix Ostomy Group Secretary and the Meeting Leader at HH Cowden Center ostomy meetings.

To learn more or sign-up for the Run for Resilience Ostomy 5k visit ostomy.org/5k. You can donate to UOAA fundraisers by Chris and other resilient participants here. 

Resilience Story: Maria Sandoval

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Hi, my name is Maria Sandoval. I wanted to come on here and share my story with you. You may ask, why am I putting the Run for Resilience Ostomy 5k run/walk/roll together in my community? Because it has given me my life back.

In November of 2022 I had surgery to get an ostomy because my ulcerative colitis was getting worse. I was diagnosed with ulcerative colitis in 2012. Ulcerative colitis is an inflammatory bowel disease (IBD) that causes inflammation and ulcers (sores) in your digestive tract. Ulcerative Colitis affects the innermost lining of your large intestine, also called the colon, and rectum. In most people, symptoms usually develop over time, rather than suddenly.

In my case my symptoms did develop over time and things got worse in 2020. The medication I was put on was no longer working. My body was shutting down and therefore my doctor recommended colorectal surgery.

It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone.

Me during a Remicade infusion for ulcerative colitis before making the choice to have ostomy surgery.

I had no idea what this surgery was nor did I know anyone that had undergone this type of surgery. The fear of the unknown put me off from having this done. I was fortunate to have a great surgeon with a great team who gave me all the information I could ask for. They were patient with me, and so understanding of all my feelings. They answered my questions and addressed my concerns. Having that information and having faith, helped me make the decision to have this surgery. I had hope for the first time since being diagnosed with ulcerative colitis.

Currently, it’s 2023 and I am 33 and I have my life back. For the first time in a decade I can honestly say I feel safe in my body. I have energy, I feel empowered and I’m here to share my story. Making the decision to have my colon removed and have an ostomy was the best thing I could have done for myself.

I am here to stop the stigma around having an Ostomy. I am here to highlight the positives of having one and how it has impacted my life.

I learned about UOAA through social media. I went to ostomy.org to look up what UOAA is all about and saw that they had a 5k run for Ostomy Awareness Day every October. I have always loved to run in races and thought how cool it would be if I could bring this run to my area. I contacted UOAA to see if they would like to have Northwest Arkansas be part of their Run for Resilience Ostomy 5k and they were more than happy to do so.

I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

Me 19 days after my Ostomy Surgery.

The Run for Resilience Ostomy 5k is the major fundraiser for all the great things UOAA does. UOAA has great resources to help with recovery and one of those resources I happened to stumble upon is their support group finder. UOAA does a great job of locating support groups and WOC nurses in your area. Forever grateful for that! I also use their site for educational information, self-advocacy checklists, and finding events they have going on, like the Run for the Resilience Ostomy 5k and their National Conference.

By hosting and taking part in the Run for Resilience I hope to spread awareness on ostomies and continent diversion surgery. It’s important to me to shine light on ostomies and to give hope to my ostomy community in Arkansas and show them that they are not alone. That they have a community to go to.

My mother is helping me host our first event. I am so grateful to have my family help me through this journey. My husband and mother were my caregivers before and after surgery. Making the decision to have surgery was a difficult one, but they both helped me through it.

I hope everyone no matter of where they are out takes part in a Run for Resilience event near them or the Worldwide Virtual Ostomy 5k. I love sharing photos like the one here of a half-marathon I ran five months post-op! Everyone should go at their own pace and talk to their doctor, but for me I think it was one month after my ostomy surgery when I started to train for the half marathon. I took it pretty slow. I began by walking a mile and slowly worked my way up to a jog. By month four I was feeling great and feeling like my old self. I was so proud to have finished the race. I wasn’t racing for time, rather, I was racing for me. My ostomy gave me back my confidence in running.

I would run races here and there before my ostomy surgery. My ulcerative colitis would make it difficult at times to run, but when it was in remission I was happy to get back to running. I have always enjoyed running because it was the one thing I could control in my life. My ostomy gave that back to me. Ostomies are truly life savers!

To sign-up or donate to a Run for Resilience Ostomy 5k event near you visit ostomy.org/5k. Support or learn more about Maria’s event, the Rogers, Arkansas Ostomy 5k and follow her 5k on Instagram.

Ostomy What? Post Surgery Ostomy Advice

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By Lisa Febre

You’re not alone, as a new ostomy patient I was overwhelmed. Here is how I learned how to take it slow, keep it simple, and learn about this new normal.

I awoke from surgery like many new ostomates: confused, frightened, angry, overwhelmed, sad, and anxious. A cancer diagnosis and a colostomy were more than I could handle for one morning. It’s a lot to take in, and I just wasn’t ready to face any of it.

Until I had my ostomy, I did not know what this was. Sometimes I would hear vague references on a tv show to “a bag,” but no proper descriptions or explanations. I had a bag and no idea what it was or what to do with it. Afraid to look at it, I thought I might see something so gross it would prevent me from taking care of myself. Would I need to rely on someone else to take care of me from now on? Did all my independence just go out the window with one surgery?

Though knowledgeable and well meaning, the ostomy nurse at the hospital left me feeling overwhelmed. The information she was sharing came at breakneck speed. Words like “flange,” “wafer,” “stoma,” “output,” and “pouching system” were being thrown around as if I already knew what they were. Demonstrations of things like ostomy powders and barrier tape only confused me more. All I remembered from the half-hour spent with the ostomy nurse was how to measure my stoma and how to cut the barrier to size.

Types of ostomy bags or pouches ileostomyThe ostomy nurse had a lot of information to cover in a short period, and she thought all of it was important. Afraid of failing, I was certain that I was going to make terrible mistakes. I doubted my ability to do any of this.

Amidst my stress over the new colostomy, I was also recovering from major abdominal surgery. A colectomy is a dramatic change to the body. In my case, I had a large vertical incision that needed care, along with the sutures around my new stoma. Five days after surgery, I was still easing into my post-op life with a soft-solids diet, gradually introducing new foods according to the nutrition guidelines my surgeon and nutritionist had set for me. Exhausted, sore, depressed, and worried about the future, I had a lot on my plate.

Learn About Your Ostomy Supplies

Videos to the rescue. The ostomy supply manufacturers offer “how-to” videos on YouTube and elsewhere for their products, which are straightforward and helpful. I spoke with a customer support representative from the medical supply service a few days after I got home, and he gave me the best advice: “keep it simple until you get the hang of it. Then you can try the fancy stuff.” His explanations were simpler and this time, he instilled me with confidence. He took the time to answer my questions and used language that made it clear to me that this wasn’t rocket science.

Don’t be afraid to make phone calls to the ostomy supply companies. Their customer service people can be the most helpful people you’ll encounter with your ostomy. Also get the New Ostomy Patient Guide from UOAA that has images and articles to help you adjust to all the new terminology and information.

Get to know the parts of your pouching system. Hospitals will send you home with a particular brand, so begin there but know you can sample a variety of products. I had a 2-piece, filtered, drainable system with a flat barrier (wafer). I decided to stick with what the surgeon had stuck on me, copying that for a few weeks. Thankfully, it can take up to a week after surgery for the gut to work again, so I had time to get to know the appliance before having to deal with output.

Take it Slow

Caring for the colectomy and ostomy incisions was no different from other surgeries. Follow the hospital’s discharge instructions, which are to keep the sutures dry when bathing (there are excellent waterproof dressings readily available online and at your pharmacy). It’s a good idea to trim your barrier adhesive patch to avoid your midline incision until it is fully healed. Even though the sutures around your stoma are being exposed to output, don’t panic. Gently wash the area with each appliance change.

Your surgeon will give you important instructions regarding lifting limits. This usually entails not lifting over 5 pounds for several weeks. They will also advise you to walk as much as possible. Movement aids in jumpstarting your digestion, so walk every day! Always follow your doctor’s instructions: many people are at high risk for parastomal hernia. Your surgeon will tailor your lifting and activity limits to your personal needs, and it is in your best interest to follow those instructions diligently.

Keep it Simple

Keep things as simple as possible as you adjust to your new ostomy. Don’t burden yourself by wondering about all the extra items floating around in the “Starter Kit.” When people in your support group talk about tricks and tips, don’t worry, you’ll soon reach a point when you’re the one giving the advice. It’s overwhelming in the beginning, but before you know it, you’ll become familiar with all the accessories, too. As your body recovers, and you settle into your new normal, you’ll gain confidence in caring for your ostomy. For a month after surgery, I only dealt with the wafer/barrier and pouch. Simplicity helped me feel confident.

After surgery, your stoma will be inflamed. For 8-12 weeks after surgery, as it heals, it will change size before settling into its permanent size. Each time you change your barrier, use the stoma template that comes with your supplies. And don’t worry if your stoma bleeds a little – this is completely normal and should stop quickly. If the bleeding is heavy, it won’t stop, or you know for a fact you cut your stoma on a sharp edge, call your doctor or ostomy nurse.

Don’t be afraid: stomas move before and during output. Your stoma is a living piece of your intestine and intestines move! It is normal for it to retract and pucker. It will let you know when something is about to happen. This is very useful when you’re not home; you’ll feel more confident about knowing when to find a bathroom.

Find the Supplies that Work Best for You

By the end of the first 6 weeks, I was feeling much surer of myself with taking care of my colostomy. Then, I tried all kinds of pouching systems along with many accessories. When I changed brands, I went through the process all over again, speaking to sales representatives and using all the free samples they sent me. Just remember you’ll need a prescription for your supplies from your surgeon, so once the hospital sets you up with a supply company, give that to them. And if/when you change brands, you’ll need a new prescription for that. Don’t worry, it sounds confusing now, but your supply company should handle these details for you.

Be Kind to Yourself and Embrace Peer Support

It’s normal to be overwhelmed in the beginning, so aim to keep things simple. If your ostomy nurse was like mine and raced through the material, it’s difficult to feel confident on your own. Hit reset and try to copy what the surgeon put on you after surgery. Your home health aide may or may not have experience with ostomies, so do your own research and practice with sample supplies. Join a support group as soon after surgery as you can. Armed with information, experience, and support, you, too, will find the confidence you need to care for your new ostomy.

 

Lisa Febre is the author of “Round the Twist: Facing the Abdominable,” a memoir about her diagnosis and treatment of Stage-4c Colon Cancer, which hits bookshelves in September 2023. She had a descending colostomy for 10-months. To learn more visit her at UOAA’s National Conference in August or visit  lisafebre.com.

 

 

‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay “OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

New Changes to CDC Guidelines Should Protect Medication for Ostomy Output Uses

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By UOAA Advocacy Manager Jeanine Gleba, MEd.

For several years UOAA has been advocating for those in the ostomy and digestive disease communities who use opioids for non-pain conditions. In UOAA’s May 2022 ENewsletter we reported that UOAA submitted federal comments with the National Center for Injury and Prevention and Control at the Centers for Disease Control and Prevention on its draft update of the 2016 CDC Guidelines for Prescribing Opioids for Chronic Pain. We recommended that the guidelines should not be intended for primary care physicians and other clinicians providing non-pain care for outpatients such as those with digestive diseases resulting in an ostomy or fecal continent diversion who may use opioids to manage high output stomas or patients with short bowel syndrome.  

On November 4th, the CDC released the updated Clinical Practice Guidelines for Prescribing Opioids for Pain – United States, 2022. They had over 5500 public comments submitted.

Our voices were heard! In the CDC Response to Public Comments on the Draft 2022 Clinical Practice Guideline for Prescribing Opioids for Pain they specifically mention our submission under the “summary of themes that emerged from the public comments submitted to CDC” bullet number six:  

  • Some respondents representing non-pain related conditions that use opioids for treatment (e.g., ostomy-related conditions and restless leg syndrome [RLS]) proposed that the Guideline title should be adjusted to better reflect its content and intended use. 

Then on page 4 under the “summary of edits the CDC made to the draft 2022 Clinical Practice Guideline based on public comment” bullets 2 and 3 apply to our comments and concerns:

  • CDC changed the name of the document from the CDC Clinical Practice Guideline for Prescribing Opioids to CDC Clinical Practice Guideline for Prescribing Opioids for Pain to further emphasize its focus on prescription opioids for the treatment of pain. 
  • CDC added language throughout the document to emphasize that the 2022 Clinical Practice Guideline provides voluntary clinical practice recommendations that are not intended to be inflexible standards of care or implemented as absolute limits of policy or practice for patients by clinicians, healthcare systems, or government entities. 

They did not specifically add any statement that the guidelines are not intended for primary care physicians and other clinicians providing non-pain care for outpatients with chronic and acute digestive diseases; however, the important takeaways from the document for our patient population are the following:

1) The voluntary guideline is intended ONLY for primary care clinicians and other clinicians providing PAIN care (acute pain, subacute pain and chronic pain).

2) The guideline is not a replacement for clinical judgment or individualized person-centered care.

3) The guideline should not be applied as inflexible standards of care across patients or patient populations by healthcare professionals, health systems, pharmacies, third-party payors or state, local or federal organizations or entities.

4) The guideline is not a law, regulation or policy that dictates clinical practice.

5) As stated on page 5 – “To avoid unintended consequences for patients, this clinical practice guideline should NOT be misapplied, or policies derived from it, beyond its intended use. Examples of misapplication or inappropriate policies include being inflexible on opioid dosage and duration, discontinuing or dismissing patients from a practice…and applying recommendations to populations that are not a focus of the clinical practice guideline.” 

In conclusion, it is clear that these new guidelines should not be applied to our patient populations utilizing opioids for non-pain treatments in accordance with the recommendations of their physician, which was the goal of our advocacy effort. 

With the updated CDC guidelines there should no longer be any misinterpretation of their voluntary recommendations. Our patient community will be protected and should not be restricted access to their lifesaving treatment. 

 

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Sixty Years with an Ostomy

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By Ed Pfueller, UOAA Communications Manager

Beverly Dabliz is ready to celebrate a monumental 60th anniversary but even her closest friends do not all know what it is for. Recently she decided it was finally time to share the news. “Just last week I told a close friend I’ve known for 66 years – I’m the godmother of her twins, but even they did not know I have an ostomy. It was just not something people talked about,” Dabliz says. She adds “People are surprised to learn the news, but it does not matter to them one bit.”

Dabliz had ileostomy surgery in 1962 at Ferguson Hospital in Grand Rapids, Michigan. Ferguson was one of the first clinics in the world to perform such surgeries. By the time she turned twenty she was suffering from ulcerative colitis and by twenty-four ran out of treatment options. “After sixty years I have never regretted it, it has allowed me to live a great life,” Dabliz says.

Almost no one with the exception of her doctor understood the procedure and how to care for it. She knew she was on her own on how to carry on and reach her full potential.
Even if you have a great support network Dabliz recommends, “You have to own it and take care of it.” Ostomy supplies of that time bear little resemblance to the lightweight, contoured appliances of today. “I wore a heavy two-piece rubber appliance held on with an ostomy glue,” she recalls. It was not until the 70s that pouching systems began to evolve into something similar to the one and two-piece systems commonly used today.

“It was just not something people talked about,”

Over the years Dabliz has helped other ostomates in need through the Detroit Metro Ostomy Support Group. While doing hospital visits she would always appear in fitted clothes and enjoyed how grateful the patients were to hear from someone else living with an ostomy. She is happy about the recent return of in-person support group meetings. At meetings, Dabliz is sometimes surprised by some of the concerns new ostomates have regarding things like food, “I just tell them to be sure you chew your food very well, in the beginning, I tried it all without being scared but I’m still often the last one eating. I chew my food so well I’ve worn down teeth.”

Beverly Dabliz, right, works during a mission trip to Costa Rica with her Michigan church group.

Dabliz worked in the accounting department of a computer company in Detroit and Plymouth, Michigan for 45 years before retiring. Her boss was aware of her ostomy and supportive. “I never missed a day of work because of the ostomy,” she says.

Six years ago Dabliz had a fight with kidney cancer and three years ago a shoulder replacement surgery. But she has otherwise been fortunate to live a healthy life since the ostomy surgery six decades ago. She still makes it a point to get out of the house almost every day. “I have always been very active and really have not had any ostomy issues,” Dabliz says. In her eighties now, she still enjoys golfing and was in a bowling league for many years.

Beverly Dabliz working as a volunteer at the Eagle River Methodist Camp in Juneau, Alaska.

Dabliz can also still be found tending to her yard and is reluctant to give up shoveling the Michigan snow – though neighbors have started beating her to it. With the exception of some subtle changes, her ostomy regiment remains routine. She consistently uses the same products.

Dabliz is an active member of her church and has gone on many mission trips over the years in countries such as Jamaica and Costa Rica. “I’ve had to use outhouses in Alaska and done mission work after Hurricane Katrina,” Dabliz says. Even in these tight living quarters, nobody knew she had an ostomy.

An ostomy has never gotten in the way of her passion for traveling and cruising the world with her older sister. The pair have even circumnavigated Australia and New Zealand. Her advice; “I take extra supplies and always bring some on carry-on and have never had any trouble flying. Just do it. Go swimming, do whatever you want to do,” she says.

In celebration of her 60th Stomaversary and 85th Birthday, Dabliz is hoping to take a Holland America cruise around Iceland with her sister. Her minister and family have known of her ostomy but she hopes to tell more friends about what this landmark occasion means to her. Dabliz is confident they will take the news in stride as they help her celebrate a life that could have been cut way too short if not for that long ago ostomy surgery.

Twists and Turns of J-Pouch Recovery

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By Robin Glover

The recovery process for a j-pouch is just that. It’s a process. It takes time and patience and is different for everyone. For some, it can be relatively easy. For others, it can be a winding path with twists and turns just like the colon that was removed for it.

But one thing is the same for practically everyone: j-pouch surgery offers hope for a return to a life that’s less encumbered by the alternatives. Seriously, who doesn’t want to poop out of their butt again if given the opportunity? Oh, and getting rid of that disease-ravaged large intestine is a plus, too.

What Is A J-Pouch?

In case you’re reading this to research information for yourself, friend or family member, here’s a quick explanation of what a j-pouch is:

Medically known as Ileal Pouch Anal Anastomosis (IPAA) surgery, it involves removing the entire colon and rectum and then connecting the small intestine directly to the anus. The term j-pouch refers to the shape of the “pouch” that’s created when the surgeon folds the small intestine on itself and creates a reservoir to hold waste until it is passed through the anus. It can also be known as an s-pouch or w-pouch based on how it’s surgically constructed. J-Pouch surgery is most often done in cases of ulcerative colitis where there is no disease in the small intestine or as a result of FAP, colorectal cancer or a bowel perforation.

The surgery for a j-pouch almost always involves two or three steps. The first step, and usually the more major surgery, is to remove the large intestine. At the same time, an ileostomy is created that will be used until the small intestine is reattached. This will be a temporary external pouch.

Stages of J-Pouch Surgery

Depending on individual circumstances, the first surgery can also involve removing the rectum and creating the internal j-pouch. However, it can also be its own separate procedure. But either way, the final step is to reverse the ileostomy and connect the small intestine to the anus. At this point, no external pouch is needed and the traditional route of passing stool can resume.

Be aware that the patient has the right to decide between a J-pouch or keeping the ostomy and should know not all temporary ostomies are able to be taken down and not all J-pouches are able to be connected.

Early Recovery From J-Pouch Surgery

It’s an exciting experience when you wake up from the final surgery and see that there’s no longer a need to have a pouch attached to you. What was once your stoma is now a still pretty nasty wound, but one that will heal and become just another proud scar.

Things won’t be working quite yet though. It will be a few days before you actually have a bowel movement. Sometimes it can take longer, but that’s not a big deal. When you’re in the hospital you’ll be monitored and well taken care of. You likely won’t go home until your doctors are sure everything is working correctly, including being able to eat and pass solid food.

Everything that comes out will still be liquid, though. It will be a little bit before you start passing anything even semi-solid. And you might not ever get to that point or only have it happen on rare occasions. There’s nothing unusual about that.

J-Pouch Guide

Diet Right After Going Home

The diet you follow after getting home from the hospital will be communicated to you by your doctor and you’ll probably go home with many guides and resources. Mainly, staying hydrated is very important and avoid raw fruits or vegetables, nuts, whole grain, seeds, or anything else that doesn’t digest in around two hours. Since you no longer have a large intestine, food has much less time to be processed and if you eat a handful of nuts they’re going to come out the same way they went down.

Check the Eating with an Ostomy Guide for a much more complete diet guideline.

But, even worse, it can cause a blockage. Blockages are the bane of a j-pouch’s existence. You need to be careful about what you eat (typically called a “low residue” diet) and chew your food thoroughly. Chew extra. And then some more. Take small bites and don’t take any risks right away. Introduce new foods slowly.

NOTE: Your doctor or dietician will know the best foods to eat and what to avoid for your specific needs. Always follow their directions before anything you read on the internet.

Getting To Know Your J-Pouch

It can take a while after surgery to completely adjust to your new plumbing. You’ll learn what foods are “safe foods” and which to avoid. You’ll also learn about how your j-pouch behaves and how it affects your daily life.

For example, you’ll start to get an idea of how many times per day you’ll go to the bathroom and what consistency you can expect. You’ll also learn what each sense of urgency means and when you need to go to the bathroom right away and when you can hold it. It will feel like you need to go to the bathroom a lot and you’ll probably actually need to at the beginning. But, over time, your j-pouch will stretch and grow to be able to hold more before needing to be emptied.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

You’ll Experience Butt Burn

Speaking of going to the bathroom a lot, you may experience what is known as “butt burn.” This is because, on top of going to the bathroom more often, without a large intestine your stool will be much more acidic from digestive enzymes.

It’s necessary to take special care and make sure everything is extra clean. A bidet is a great idea because rubbing with toilet paper can also cause irritation. There are also many creams and lotions you can use to soothe and protect. Zinc-based lotions are a good place to start. And get some disposable gloves while you’re at it.

You may go to the bathroom up to 20 times a day (or more) and experience irritation from going so much. But, it will get better as you learn more about your j-pouch and develop processes that work best for you. In the end (no pun intended), you’ll get to a point where you’re comfortable and know how to manage it like an expert.

Ideally, after everything settles down, you will only go to the bathroom 4 to 8 times a day and it will be a simple and quick emptying process.

It’s Not Always Easy

As mentioned, j-pouch recovery is a process. At the beginning, there will be accidents (typically nighttime) and discomfort. It’s a whole new way of digesting food and your body needs time to adjust. And you will need time to adjust to it too. It’s a major change.

Be aware of possible complications such as pouchitis and tell your doctor if you have more frequent or blood in your bowel movements.If you have a j-pouch or need one, you’ve already been through a lot. You know you’re resilient and can make it through almost anything. This is just another step in your journey.

Don’t let any of this discourage you. There’s a reason you decided to get a j-pouch and there’s a wealth of resources and support out there to help. Everything you will experience has been experienced before and the j-pouch community is always ready to help. But keep in mind that social media is often a place to vent so you might see more negative than positive posts.

So focus on the good, be patient, and look forward to enjoying pooping out of your butt again!

 

 

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.

A Worldwide Movement For Ostomy Rights!

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By Jeanine Gleba UOAA Advocacy Manager

Every three years, ostomates around the world come together to celebrate World Ostomy Day on the first Saturday in October.  This year it will be held on October 2, 2021 and the European Ostomy Association (EOA) has declared the motto as “Ostomates’ Rights Are Human Rights – anytime and anywhere!” It is an opportunity for the world to join forces to increase public acceptance of ostomy surgery and to help people to better understand that health is a human right for everyone.

During the Covid19 pandemic the ostomy community around the world has been impacted such as ostomy nurse visits in the home being reduced and peer-to-peer support visits from an ostomy mentor in the hospital stopped.  In some countries, there has been limited access to ostomy supplies due to supply chain issues and/or limited access to affordable ostomy appliances. As a result, the EOA wanted to rekindle a focus on the Charter of Ostomates Rights. 

In the United States an ongoing UOAA advocacy initiative is to improve the quality of ostomy health care and ensure higher standards of care in all health care settings. One strategy to drive this change has been the utilization of the “You Matter! Know What to Expect and Know Your Rights Ostomy and Continent Diversion Patient Bill of Rights” as it specifically defines what high quality care should be expected and received during the ostomy surgical experience and for continuum of care. 

With the World Ostomy Day motto we will join the worldwide movement and the EOA’s goal to: “underline that ostomate rights are not negotiable. They must be respected by governments, politicians, healthcare authorities, companies and suppliers, by doctors and nurses, by every human and by every society – even in uncertain times.” 

Quality ostomy care should be provided to all regardless of race/ethnicity, age, gender, religion, place of birth, health or other status (even having an ostomy!). This World Ostomy Day you can help us drive change in the United States. Share the newly revised patient bill of rights poster (11×17 for printing purposes) with your ostomy surgeon, GI doctor, Primary Care Physician and/or ostomy nurse.  Ask them to ensure that these standards of care are utilized in their practice. 

As always there will be many other fun and important ways that people can participate in this year’s celebration! You can:

  • Attend an Online Event. UOAA 2021 Ostomy Awareness Day Champion Allison Rosen will kick-off the day with a Facebook/Instagram Live on the morning of October 2nd and also host a candid Q&A that evening. UOAA representatives will also take part in a host of ostomy educational events with partner organizations and others leading up to and immediately after World Ostomy Day. Follow us on Facebook, Instagram and TikTok for updates.
  • Watch our brand-new Ostomy and Continent Diversion Patient Bill of Rights animated series (Link available in September during the weeks leading up to World Ostomy Day)
  • Walk, Run, Roll or Pedal at UOAA’s 2021 Virtual Run for Resilience Ostomy 5k anywhere in the world. Register here and you’ll have the option to get our special World Ostomy Day t-shirt. This virtual event helps UOAA raise much-needed funds to improve quality of life for people living with an ostomy or continent diversion
  • Help UOAA get a proclamation declaring World Ostomy Day from all 50 states!  A sample is also available to download on our webpage noted below or you can take action at the state level here.
  • Upload our special “frame” for your social media profile photos that says you speak up for ostomy rights and use the hashtags: #WorldOstomyDay, #OstomyRights, #MyAccessMatters
  • Submit a letter to the editor of your local newspaper or reach out to local media. 
  • And so much more!

Visit the World Ostomy Day webpage for further details about the special events and the full list of all the ways to get involved.  

Let’s make the voice of ostomates in the United States heard around the world this year!

Michael Seres: a story of advocacy and resilience

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Michael Seres started 11 Health as a direct result of his experiences as an ostomate. He had suffered with Crohn’s disease for over 30 years and after a small bowel transplant, he needed an ostomy. He felt alone and powerless. The bags were hard for him to get used to and they did not help to manage his condition – they just collected output. He started blogging and tweeting about his journey and found tens of thousands of patients who felt the same way but were too anxious or disempowered to do anything about it. Michael made a commitment that he would devote his life to making a difference for these patients.

Despite his health struggles, which included fighting and beating cancer multiple times, he found the strength to start a healthcare company that shares his single-minded focus of helping patients, and in particular ostomates. The company is called 11 Health as Michael was the 11th person in the UK to have had the pioneering transplant procedure. Only a few of the 10 that went before him survived the procedure. Michael did not just survive, he thrived and accomplished so much in his short life.

Advocacy was always a part of Michael’s life. He always found time to prioritize it amidst the challenges of running an international business and managing his health. In his talk at Stanford Medicine X in 2017, he talked about a revolutionary idea of using social media for doctor-patient communications. Michael believed that patients were the most underutilized resource in healthcare and he spoke beautifully about it in his famous TEDx Talk in 2018. The need for the patient to be at the center of patient care ran through his core. He felt that patients should not be passive end users. Instead, patients should be engaged in medical decision making and empowered by education and self-care tools. Michael’s reach was spread wide and he advocated for patients to the leadership of Google and even on a panel alongside Bill Clinton.

We lost Michael last year. Whilst our hearts are still filled with sadness, we are more determined than ever to deliver his vision of changing healthcare and making it patient centric.  He believed passionately in the ‘everyone included’ philosophy. A movement for change supported by doctors, nurses, policy makers but most importantly, patients. Making that change will be Michael’s legacy.

We are creating a special birthday Gutsy Gathering on March 23 from 3-7pm EST in Michael’s memory. It will not be a day to mourn. It will be a day to celebrate the achievements of an extraordinary man by inviting some equally extraordinary people to talk about their personal or professional involvement in the patient experience. Sessions will focus on themes relating to advocacy, confidence, community, and change.

The Michael Seres birthday Gutsy Gathering will be an annual event and an opportunity for friends to meet in a face-to-face setting. This year it will be virtual, with speakers joining us from around the world from across the ‘everyone included’ spectrum. The live sessions will run from 3-7pm EST and participants can come and go as their schedules allow. The event is free, and registration is required at www.gutsygathering.com. Our esteemed list of speakers continues to grow and can be found on the registration page. Please join us!

 

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

Allison Rosen’s Story: Me, Myself and Fill

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Colorectal cancer survivor Allison shares her ostomy story. “No one truly understands what you are going through physically and psychologically more than those who have been there themselves.” Check out her mythbusting videos and more.

Read more

Angie’s Story: Going Public about Her Ostomy After 38 Years

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Embracing Ostomy Advocacy and Giving Back

 

By Angie Davenport

I’ve had my ileostomy for 38 years due to ulcerative colitis but I only recently went public to encourage other ostomates.  Over the years I’ve helped many individuals by word of mouth while keeping my ileostomy private to the outside world. I have always wanted to be a blessing on a wider scope though to others with ostomies.

I was first diagnosed with ulcerative colitis in 1980 when I was three months pregnant.  At first, I thought it was pregnancy symptoms.  After a major episode, I was treated with medication for ulcerative colitis.  My son, James was born a few weeks early due to complications.

After the birth of my son in March of 1981, everything was under control and I eventually relocated from Warren, Ohio to Atlanta, Georgia.  While living in Atlanta I had a major setback with ulcerative colitis and I had to fly back to Ohio immediately and went directly to the hospital.

After several weeks of treatments in the hospital, my doctor came into my hospital room one night and said we have to do surgery or you won’t make it 24 hours.  I’ll never forget my mom crying and praying for God to give her my disease so I could have a normal life.

When I received my permanent ileostomy in March of 1982 I was a young 23-year-old single mom.  It was the day before my son’s first birthday.  I had never heard of an ostomy.  When I woke up in ICU I was devastated, ashamed and frightened.  I thought my life was over.

Once I became strong enough physically and mentally I moved back to Atlanta.  I was still feeling ashamed and frustrated until my physician in Georgia recommended I attend the local United Ostomy Association (the precursor to UOAA) support group.

While living in Atlanta I became very involved with the UOA group and completed the visitor training program.  I enjoyed visiting new ostomates at the hospital. I felt the freedom to be involved because no one really knew me in Atlanta. I remained active until I relocated back to Ohio in 1985.  That same year I married my high school sweetheart and we will celebrate 36 years of marriage in November.

Although I was very private about my ostomy I was very successful in my career. I became the first African American female officer at our local bank and functioned in several positions without the exposure of my ileostomy.  After the downsizing of my employer, I later worked 10 years at Great Lake Cheese until retiring in 2016.

What is my purpose in life?  How can I make my mom proud?

I’ve enjoyed my life as an ostomate.  I love traveling, cruising and shopping.  I was known in the business community as a person that loved to dress. I taught Dress for Success at the bank for all new tellers.

The past few years were filled with so much grief, with the most current being the death of my mom on July 4th 2019, only three days after my 60th birthday.  I was feeling the deep void of losing a brother and both parents within 4 years, depression was setting in.  I had support but I felt helpless and lost.  What is my purpose in life?  How can I make my mom proud?

Most will remember 2020 as a horrific year with so much sickness, death and devastation from a deadly pandemic.  For me, I utilized the time to seriously seek God for a purpose in my life and being quarantined turned out to be a blessing in helping me find my purpose.

I knew my testimony would bring awareness and hope to so many people.

I became more involved via social media with other ostomates.  I’ve met some wonderful friends and it became rewarding to encourage others that had shared similar experiences as me.  My heart was really saddened when I read an article about a young man that had gone to court for the right to die because he didn’t want to live with an ostomy.  I wept.  Also seeing how some individuals can’t afford the basic ostomy supplies and had to use grocery store bags and tape to secure their ostomy bags was heartbreaking.  I knew then, that there was so much more I could do for the ostomy community.  I knew my testimony would bring awareness and hope to so many people.

As a member of Jearlean Taylor’s Ostomy Stylzz Facebook Group I participated in a virtual fashion show.  She is a personal inspiration to me and that show boosted my confidence to a much greater level.  I felt a relief to go public.  I chose August 14th, 2020 to go live on Facebook and share my story.  I felt such freedom once I finished.  There were family members, coworkers, church and community friends that responded and supported me in disbelief.  For the past 38 years, they never knew I had an ostomy.

One family friend messaged me and told me that he was scheduled for surgery but has canceled many times, but because of my video he felt he could now go through it.  I still check on him to make sure he’s not having any problems.  That made going public all worth it.  But what else could I do?

I decided to participate in the Run for Resilience Ostomy 5K.  I registered over 20 walkers to participate virtually in several cities and I exceeded my fundraising goal by almost 100%.  The highlight of the day was my local mayor stopping by to present me with a proclamation from the City of Warren in support of ostomy awareness. Our local newspaper also highlighted the event.

…because of my video he felt he could now go through it.

After posting my Ostomy Awareness Day photos and story on Facebook I was contacted by so many family and friends willing to support me in the future.

With the pandemic still active, I’ve been limited in getting out in the public but I do try to make an effort to encourage other ostomates daily.  I’ve connected with my local Affiliated Support Group leader and I’m looking forward to greater things once we can meet publicly.

On, March 6, 2021 I will be a 39-year ostomate.

I’m on Facebook and I have a Youtube video discussing my ostomy journey.

I’m free, living with my ostomy!

 

Virtual Support for Ostomy and Other Needs

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By Ellyn Mantell

It continues…the pandemic is rearing its ugly head and seems to be gaining strength once again, despite never universally weakening. Whereas we assumed by this time in the fall, we would be back to some sense of normalcy, we are, instead, buying jackets, shawls, gloves, and hats so we can eat outdoors and continue to safely socialize. Travel requires an army intelligence level approach including Ultra Violet wands, visors over masks, dozens of wipes, and gallons of hand sanitizer. Seeing family feels like a tease, since hugging and kissing are off-limits, with no change in sight. I could go on, but you know all of this, and more.

The one good thing that keeps me upbeat is the wonderful feeling of connecting with our support groups via Zoom. Ostomates still have concerns and needs, surgeries continue to happen, and new members need a safe place to begin their journey to their new normal. Even those of us who are comfortable and knowledgeable still need the same safe place to discuss concerns that continue to develop. And the ability to see familiar faces goes miles in feeling comfort.

I know from others who are doing virtual support group meetings that they, too, are feeling so much more secure in the roads they are traveling. Whether it is AA, or NA for addiction, or Alzheimer’s support for spouses or caregivers, cancer survivors, etc., people need to be able to talk and gain strength. Perhaps the ability to remain anonymous may be even more positive than in-person meetings.

Zoom and virtual meetings have been a lifesaver, and had we not been in this demanding situation, we may never have discovered that. I can still remember being asked to participate in a Zoom meeting a few years ago, and running as quickly as possible away from the involvement. It seemed so overwhelming and daunting. But necessity is truly the mother of invention, and I am eternally grateful that Zoom has made itself available for the masses.

Please consider reaching out to an ostomy support group via a computer or smartphone, if you are in need of…support. There is, undoubtedly, a group to help with almost every issue you may have. I believe I speak for those who facilitate when I say we care about you, want to help you, are likely to share your concerns and feelings, and most of all, are committed to you. I know that each ostomate who walks into my life represents an opportunity to help them look at their new life in a positive way, and with that in mind, our value is rather invaluable!

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

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