Tag Archive for: colostomy

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.

 

Why Larry David’s “Colostomy Bag” Curb episode is making me speak out about my ostomy after 48 years

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By Robin Bergstein Berman

The latest episode of Larry David’s, Curb Your Enthusiasm was called “The Colostomy Bag” and during an attempt to be humorous, his usually (awkward and despicable character) made disparaging comments relating to ostomates. At least it opened up room for discussion… It’s the first time that I posted on my Facebook page about my one-and-done Ileostomy surgery 48 years ago and I received nothing but words of support. I shared below why I found the episode harmful:

“Being an ostomate does not define me.” Says Robin, 63, and has had her ileostomy for 48 years, finding health and a full life after ulcerative colitis.

This is too important not to address so I’m about to “out” myself for those who do not know. Larry David’s, Curb Your Enthusiasm episode that aired tonight was called “The Colostomy Bag” and it was harmful for a few reasons. I’m able to laugh at myself but this was not funny mostly because it passed along inaccurate information and promoted public stigmas that could cost lives. Those who desperately need a life-saving surgery (for bowel diseases, cancers and more), often put it off far too long due to inaccurate public opinion including that of too many doctors.

There were three primary comments that were said, I want to address about the episode while giving only a glimpse of my journey. First of all, not all who have an ostomy have a colostomy and therefore do not wear ”Colostomy Bags”. Larry kept saying colostomy as if it encompassed all ostomies… it doesn’t.

Secondly, having an ostomy is not the worst thing that anyone could possibly have. He made it sound as if it is. It’s life-saving and has given me personally 48 more years of life to date that I wouldn’t have had without the complete colectomy/Ileostomy I was given in a nine hour surgery in 1975. I would not be here without it since I was bleeding to death and not able to recover after given the maximum doses of steroids for an extended period of time. Polyps, the breeding grounds for cancer cells were present and multiple were seen when my entire colon and rectum were removed at 15 years old. The pain I endured prior to surgery was unfathomable and I won’t here expand on all of what I experienced. I had the most severe chronic ulcerative colitis, spending weeks and months at a time in the hospital from 11 to 15 years old.

Robin with her two, now adult sons, whom she carried to term and had by emergency c-section after her ileostomy surgery.

Back to the episode; there is no such thing as a “shit in the bag look” for anyone thinking there is, like Larry. It was only slightly humorous in the context, but for someone facing this surgery and not knowing, there is no facial indications that we wear an appliance/pouch/bag. Now when he felt guilty about his comment to the car salesmen and wondered if he could gift a Louie Vitton Illeostomy Bag, that I’d like !!!…lol THIS was funny when Larry brought it up.

While they did say the car smelled like smoking, they alluded to it smelling like the man’s ostomy bag which is also not a “thing”. Popular public thinking is that ostomates smell, are unattractive, unappealing, not sexy or sexual and should be pitied. This too is not true. Within months after my surgery, I was at the beach away with my friend and her family, continued my relationship with my first boyfriend and went onto have others, didn’t miss a beat with school and countless other activities which were extensive and then went onto college away two years after my surgery. I’ve lived a full, active, useful life, carried both of our sons to term, working primarily but not exclusively in fragrance and cosmetics and certainly do not smell bad being told my entire life that I smell good (lol). In fact the first thing that attracted my husband to me was how I smelled at a bar after fragrance modeling all day.

I wear almost everything I want with some exceptions and am fashionable according to most. I’ve heard from too many that someone would rather be dead than to wear an ostomy bag. It’s the most absurd thing I’ve ever heard all caused by antiquated public opinion that is not valid and what this last episode of Larry David continues to promote.

I was going to wait until my 50-year anniversary with my ileostomy to reach out and make myself available but this prompted me to do it sooner.

Without fail when TV, even medical dramas, present ostomy surgery and the wearing of an appliance, they present it unfairly, wrong and impose additional stigmas. Don’t misinterpret me since adjusting to it sucks and there are challenges but it’s totally doable and makes a person no less the person they were in any way other than making them hopefully healthier.

If any one of you are facing this now or in the future, I am more than willing to help you or anyone you care about, to get through and adjust by listening, empathizing and giving you the tips and tricks I learned from a lifetime, 48 years, through all stages and phases of life.

Robin and her husband of 34 years.

It’s so much easier to find info today with social media than when I learned to adjust on my own without an ostomy, now a community is a click of a phone away and with laser surgery lessening the more invasive total cutting my body went through.

I was triggered tonight by the episode knowing how people are discouraged by doctors and the public’s misconceptions, I just had to address it not for me but for others. Ostomates are all ages and sexes and all walks of life including some professional athletes. Please let me know if you have any questions but mostly if you or a loved one are facing this life saving surgery, I’d be glad to help.If anyone would like to share my post, I’ll be glad to make it shareable by allowing public access. Let me know.

I was going to wait until my 50-year anniversary with my ileostomy to reach out and make myself available but this prompted me to do it sooner. I help where I can in the support groups and over 48 years ago tried forming a youth group here in Pittsburgh for ostomates, spoke to auditoriums full of high schoolers at various schools trying to discuss differences and acceptance for all and was always received well.  I went on a local talk show regarding my surgery back in 1975. Being an ostomate does not define me so I spend little time discussing it unless I can be of help or it’s in a relevant conversation, which it is this week!

Editors note: The humor of the Larry character in Curb Your Enthusiasm is often built around his selfish and ignorant views. In past episodes with characters who are disabled or have a disease, those characters are usually used to help magnify his faults. This episode did not include an ostomate character just the perception of what one would be like and what life would be like with one. The opportunity for awareness, such as what Michael J Fox brought to Parkinson’s in his past episodes, was missed. 

Want to get a more positive ostomy awareness message on TV and social media? Share UOAA’s Ostomy Public Service Announcement.

 

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.

 

 

Understanding Stoma and Ostomy Basics

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There are two main types of stomas, and they both have certain “ideal” characteristics in common. Do you know what they are?

Wound care nurses know that it’s not uncommon to hear the terms ostomy and stoma used interchangeably, even though they have different meanings.

What is a stoma?

Let’s start with the basics:

  • The stoma is the mouth-like, visible part of an ostomy.
  • A fecal or urinary stoma is composed of mucous membrane or the lining of the intestine that’s exposed to the surface.
  • Following ostomy surgery, effluent (output) — such as fecal matter, urine, or mucous — will pass through the opening of the stoma, called the lumen.
  • The patient will not have voluntary control of the effluent expelled by the stoma.

Types of stomas

There two major categories of stomas: the end and the loop.

End stoma

An end stoma is created when the surgeon brings one end of the GI tract through the abdominal wall, then folds it over. The surgeon then removes the other end or sews it shut.

In some cases, the surgeon will create end stomas from both ends of the GI tract, called a double-barrel stoma. In this case, you’ll see two distinct stomas: the proximal stoma discharges stool and the distal stoma discharges mucous. Sometimes an expanse of skin separates the two stomas, and sometimes they will share the same opening. This construction is most common for infants or very small children.

Loop stoma

To create this type of colostomy, the surgeon lifts a loop of the transverse colon through the abdomen. The colon is given a small split on the side facing out, and a rod is placed underneath for support. The rod may be removed after a few days when support is no longer needed. The proximal opening of the stoma drains stool from the intestine, while the distal opening of the stoma drains mucus. Loop stomas are usually created for temporary ostomies.

Characteristics of an ideal healthy stoma

Each stoma is unique, just as each patient’s physiology is unique. Different surgical techniques will result in stomas of different appearance. At the same time, the “ideal” stoma has some identifiable characteristics:

Moist

The inner surface of the stoma continually produces mucus to cleanse the stoma. Mucus production is a normal function of the intestines that serves as natural lubrication for food passing through the body. The mucus gives the healthy stoma a wet appearance.

Beefy red

Blood flow is essential to the health of the stoma. Normal stoma tissue is highly vascular and will appear deep pink to red. Pale pink is also normal in a urinary stoma. Stoma tissue may even bleed slightly when rubbed or irritated, which is normal. When a stoma turns pale, or dark, it means there’s a problem with the blood supply, so be sure to investigate.

Round

A round stoma is easiest to measure with circular rulers. It also works best with pre-cut skin barriers (the part of the ostomy appliance that affixes to the skin and attaches to pouch). An oval or irregularly shaped stoma may require cut-to-fit skin barriers.

The shape is affected by the type of ostomy and the individual’s body composition. The shape can also vary with the wave-like muscular contractions of the intestines, the peristaltic movement.

Budded/protruding

When a stoma has a rosebud shape (rather than flat or retracted), it protrudes into the pouching system. This allows the effluent to fall out into the pouch away from the body. The ideal protrusion is 2-3 cm with a lumen in the very center.

Strategically located

To easily accommodate the skin barrier, it’s ideal to have 2-3 inches of flat skin around the stoma. Avoid beltlines, bony prominences, skin folds, suture lines, or the umbilicus (belly button). Also, the patient will have more success managing a stoma located in an area that they can see and reach.

Stoma assessment

The stoma itself has no sensory nerve endings, which means there is no sensation for the patient. In other words, the patient may not feel pain or discomfort if the stoma becomes lacerated or injured. Therefore, your thorough clinical assessment of the stoma and the surrounding skin is essential to catching problems early.

Ostomy basics for healthcare clinicians: upcoming wound care conference session

As the third largest wound care conference in the nation, Wild on Wounds (WOW) is focused on advancing the healthcare workforce with impactful, innovative, hands-on wound care education built by and for clinicians.

This year, Joy Hooper, RN, BSN, CWOCN, OMS, WCC, AWCC, will present, “Ostomy: Basics and Beyond” which will provide a better level of understanding of colostomy, ileostomy, and urostomy surgery. The surgeries will be explained in a simple, relatable show-and-tell progression that builds on healthcare clinicians’ understanding GI tract anatomy. The presentation will include the concepts of peristomal skin protection from output and the different types of appliances available. The session will also include trouble shooting common peristomal skin common complications.

The session is intended for dieticians, nurses, and physical therapists and offers 4.00 contact hours. Learning objectives from the session include:

  • Identifying how to communicate basic ostomy care based on individual type of ostomy as it relates to a patient’s ostomy type
  • Selecting interventions to preserve peristomal skin integrity
  • Recognizing how to use ostomy products to customize fit thus promoting quality of life

WOW details

This year’s 17th annual WOW event is brought to you by the Wound Care Education Institute (WCEI) and Nurse.com, part of the parent company Relias’ family of brands. The conference will take place from September 13–16 in Hollywood, Florida. Conference attendees can choose from dozens of educational sessions and earn up to 25 contact hours for CE credits.

WOW offers innovative, interactive, and informative sessions, including simulation workshops, live product demonstrations, and a new pre-conference track with an entire day of legal sessions. Also new this year is a virtual poster hall featuring the latest in clinical research, clinical practice outcomes, evidence-based interventions, new technology, management of complex wounds, and more.

To learn more and register for Wild on Wounds, visit here.

-Natalie Vaughn, MBA, Senior Content Marketing Manager, Relias

Life as a Double Ostomate

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For people who have recently come to accept or are still struggling to manage one ostomy the news that they may need to have a second stoma and pouching system could be overwhelming. Please know you are not alone. Many people are able to thrive in life with two ostomies, or multiple diversions.

When UOAA hears from those with questions for a double ostomate we often refer them to ostomy community friend Jearlean Taylor.  Jearlean wanted to share some advice and invite all double ostomates to her talk and open discussion entitled “Life as a Double Ostomate” on August 12, 2023 as part of UOAA’s National Conference in Houston, Texas.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy.

I am Jearlean from Baltimore, Maryland. I am a double ostomate, fashion model, author, motivational speaker, entrepreneur, and ostomy advocate.

My life has had some unexpected outcomes. I guess you can say “life” happened. At the tender age of 3 years old I developed a rare form of cancer (Rhabdomyosarcoma). Because of the tumors I had to undergo ostomy surgery, which left me with two permanent ostomies (colostomy & urostomy).

If you or a child come to find you need a second ostomy my advice is to ADAPT. I had to learn to adapt. As I got older it was two major things for me to adapt; body and mind. When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors. I adapted to new ways of taking care of my body (ostomies) and keeping my mind positive. Those still adapting to having two ostomies reflect how far you have come and where you are now. Celebrate each moment.

A Common question or statement I get is “you had your ostomies that long. How did you adapt?” The moment I learned to deal with my medical circumstance when my mom explained that I was not different from anyone else. I am beautiful with my bags. I can be, do, and follow my passions and dreams. I can live a full and vibrant life. It happened just as she said. Because of what she instilled in me, I BELIEVED IT.

When we hear two ostomies we get scared, but when we accept what we can’t change it says we are survivors.

Sharing with the community of double ostomates is so refreshing and exciting. It is true “we are not alone”. We can live our life as a double ostomate with joy. We are more than our ostomies.

I also try to give encouraging tips for dressing with an ostomy for comfort and peace of mind. Remember.

  • We are beautiful from the inside out
  • Work with your body type and comfort
  • Look for clothing that YOU like ,and what is comfortable for your ostomies
  • Shopping for clothing; take a family or friend along for support
  • Try on multiple items of clothing, even the clothing in your closet
  • Consider ostomy accessories (ostomy wraps, stealth belt, hernia belt, fitted tops, high waist undergarments, etc..)

We have the ability to make a difference and change lives even through our struggles. You may have an ostomy, dealing with chronic illness, feeling down and inadequate at times, but remember you are more than you have become.  Our situations, challenges, and unforeseen circumstances does not have to dictate who we are or who we can become. My purpose is to inform everyone that “life” happens to us all; good, bad, and indifferent. I want to show people even through our struggles, pain, disease, and even having ostomy we have a purpose in life.

“DIFFERENT TO MAKE A DIFFERENCE“

 

You can find Jearlean online at jearleantaylor.com and across social media. Meet her and a whole community of double ostomates at UOAA’s 8th National Conference August 10-12, 2023, In Houston Texas. 

Jessica’s Ostomy Story: Making an Invisible Illness Visible

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Words and Photos by Jessica Miles

Living with a permanent ostomy can bring on significant changes in one’s personal, social and professional life. My biggest fear around having my ostomy surgery was leakage, particularly in public, skin breakdown and altered body image. There was a lot of trial and error in the beginning, but I have found what works for me as well as the confidence to share about it. I have always been an empath and very compassionate, however, I have now found a new passion for helping others (through my surgeon and on social media) learn how to manage their ostomy as well as how to cope with their new life. If you are willing and able to adapt, you can do anything!

In 2016, after years of unexplained symptoms, countless procedures, hospitalizations, tests, and a couple of misdiagnoses, it was confirmed that I had a genetic connective tissue disorder caused by a defect in the protein collagen. I was diagnosed with Classical type Ehlers-Danlos Syndrome. More than 90% of people with Classical EDS have mutations in the COL5A1 or COL5A2 gene. I have a mutation of the COL5A2 gene. The condition is inherited in an autosomal dominant manner. Treatment and management is focused on preventing serious complications and relieving symptoms.

Classical EDS is associated with skin hyperextensibility, joint laxity, fragile blood vessels, joint hypermobility, migraines, joint and muscle pain. Some individuals with this subtype have a deformity of heart valves and may experience a dilatation of the aorta. In cEDS there is also an increased risk for aortic dissection. cEDS patients are prone to hernias and organ prolapse, as well as comorbidities such as autonomic dysfunction…which regulates heart rate, blood pressure, temperature, pupillary response and digestion.

I ended up having multiple surgeries over the past four and a half years due to intestinal dysmotility, prolapses and hernias, resulting in a port and a permanent ostomy. I now, have an ascending end colostomy. While I prepared for years for the possibility of having one, I realized nothing truly prepares you for the actuality of living with a bag on your belly for the rest of your life. Though little by little, the stigma took a back seat to the reality that life with an ostomy can be just as good, if not better for some, than life without one. I suffered constantly from abdominal pain, nausea, vomiting, bloating, constipation, bowel obstructions and malabsorption. While I still struggle with many debilitating symptoms of my disorder, I am now able to eat, gain weight and go to the bathroom regularly. Something I always took for granted until I was no longer able to do so.

My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

Though I have a constant physical reminder of my condition in the ostomy, to the rest of the world, mine is a largely invisible illness.

It’s hard to describe how I feel to someone who has no idea what daily life with a chronic illness is like. I feel awful on the inside but look perfectly fine on the outside. Putting on a brave face for all to see has become a habit. My symptoms aren’t usually visible to the untrained eye, but they are life-altering for me.

I’ve learned to take everything step by step and day by day. My goal is to break down the stigma of ostomies, and while it’s not always easy, to show that one can still thrive and live a happy life with chronic illness. Due to pain and fatigue, I’ve learned to budget my energy, and while I may function normally one day, I usually need to rest the next. It’s all about finding balance. I am blessed to have an amazing support system in my husband and two boys, the rest of my family and friends.

For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way.

I am a registered nurse nationally certified in inpatient obstetrics. Unfortunately due to my illness, continuous surgeries and hospitalizations, I made the most difficult decision of my life and gave up the profession I worked so hard for and one that was a huge part of my identity. I am also an award-winning, internationally published photographer, focusing primarily on birth photography and self-portraiture. I found a new purpose, capturing laboring women and their deliveries combined both of my passions: childbirth and photography.

As a photographer, I believe that art enhances the well-being of individuals, society, and our environment and that artists have the power to heal, inspire, provoke, challenge, and offer hope. For me, photography has been a powerful way to document my health journey and what I experience every day. It helps me see my progress, as well as setbacks in a cathartic way. Photography allows people to see different perspectives and can be used as a tool for personal healing and positive change for many while nurturing creativity and self-expression.

My favorite quote is by the artist, Frida Kahlo. “At the end of the day, we can endure much more than we think we can.” I have definitely found this to be true and learned I am much more resilient than I ever thought I was. My illness has caused me to know myself better, which keeps my work honest and true. In the process, you truly meet yourself, which makes for better, more authentic work.

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.

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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