March is Colorectal Cancer Awareness Month

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UOAA Supports the Survivors of Colorectal Cancer

 

Colorectal cancer is the third most common cancer diagnosis among men and women combined in the United States. There is currently no cure, but it’s 90 percent treatable if caught early with a screening. American Cancer Society estimates there will be over 140,000 new cases and over 50,000 deaths this year.

Recent research has confirmed what many have long suspected–more young people are dying of colorectal cancer. Ten percent of all new colorectal cancer patients are under the age of 50 and are too often misdiagnosed.

People with other bowel diseases have an increased risk for colorectal cancer. This includes ulcerative colitis, Crohn’s disease, pre-cancerous polyps, and hereditary syndromes such as familial adenomatous polyposis (FAP) or hereditary non-polyposis colon cancer (HNPCC), or Lynch syndrome.

If you need to have lifesaving ostomy surgery because of colorectal cancer or any other reason, education and peer-support is available from the approximately 300 affiliated support groups of United Ostomy Associations of America. Ostomy patients of all ages and their families, friends and caregivers are welcome. Find a meeting near you today. You are not alone.

UOAA is proud to be a member organization of the National Colorectal Cancer Roundtable (NCCRT). The NCCRT is a collaborative partnership with more than 100 member organizations across the nation, committed to taking action in the screening, prevention, and early detection of colorectal cancer.

Tips for a Successful Recovery after Ostomy Surgery

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By Diana Gallagher, MS, RN, CWOCN, CFCN – Facilitator for the NWA Ostomy Support Group

updated 11/3/2022

For many, ostomy surgery is lifesaving but their initial feelings on living life with an ostomy are negative. For individuals with years of unresolved incontinence or inflammatory bowel disease, however, life after surgery is frequently viewed as a positive improvement. For them, an ostomy is the promise of a return to a normal life.

As you prepare for surgery, or recover from emergency surgery, the following are important tips to help you transition into your new life and embrace living with an ostomy.

Select a surgeon with valuable experience in the type of surgery that you are facing. General surgeons as well as specialty surgeons can perform ostomy surgery. Specialty surgeons are those who have completed additional education, training, and fellowships within the specialty. These surgeons will be identified as Colorectal or Urology Surgeons. You can find a local physician through the website for the American Society of Colorectal Surgeons or by contacting the American Urological Association.

See an Ostomy Nurse. BEFORE surgery, your surgeon may refer you to a specialty nurse, like a Certified Wound Ostomy and Continence Nurse (CWOCN). If not, you will need to find a specialty nurse. This nurse will help ease your transition into living with an ostomy. Although education may be provided during your hospital stay it can be difficult to focus and remember because of anesthesia, surgical pain and stress. Your ostomy specialist will provide comprehensive education including practice pouch changes before surgery. In addition, he/she will identify and mark the best location for your ostomy. This is important because during surgery it is difficult for your surgeon to know where the waistband of your pants sits, where creases or irregularities exist and other special considerations to consider when selecting that optimal site.

Attend a United Ostomy Associations of America (UOAA) affiliated support group (ASG) meeting in your community if possible. You may think that you do not need a support group or feel that you are the type of person who does not feel comfortable in a group setting. Put those feelings aside; listening in the beginning is a good start. Join your local group, even if you don’t initially find someone your age with a similar story, there is a lot to learn. UOAA affiliated support groups are truly one of the BEST places to obtain the necessary education, helpful hints, support, and resources and many groups offer online meetings. Don’t feel that you are alone.

For more details search this website for trusted ostomy information including a New Ostomy Patient Guide, specifics on the major ostomy types, ileostomy, colostomy, urostomy and resources on topics such as diet and nutrition, sexuality emotional concerns, IBD and ostomy and much more.

FAQs

 

Determine which supplies will work best for you. Learn about the different ostomy pouching systems. In the beginning, you will most likely receive sample products from a number of companies. It is helpful to keep the 2 piece products from each manufacturer separated; wafers from one company will not necessarily snap onto a pouch from another company. The sampling program will help you try a variety of products to learn which ones work best for you.

Order your regular supplies. Once you know what you like best, an order can be placed through a distributor. There are countless distributors to choose from and depending on insurance, your supplies can be delivered monthly or every three months. The first time that you order, it is logical to order a month’s worth of supplies. As your expertise develops, you may fine-tune your list. Insurance normally pays 80% of supplies that are medically appropriate. If you have a secondary plan, the remaining 20% may be covered. Check for a list of the established limits for each product. Reorder supplies so that you are never without the supplies that you need.

Select a place to keep your ostomy supplies organized. Many people keep their basic supplies in a bathroom drawer, others buy a plastic organizer with several drawers that can be moved about. Excess supplies can be stored in a closet but regardless of where you choose to keep supplies, it is best to avoid temperature extremes and high levels of humidity.

Be prepared. In addition to the extra supplies that you keep on hand at home, always keep a small pouch with all the supplies necessary for a complete change with you. Like your other supplies, these should be kept away from temperature extremes and humidity. Hopefully, you will rarely need to make an unplanned change, but being prepared, makes most ostomates feel secure and confident. If you anticipate an occasional return to the hospital, keep a bag packed with your preferred supplies. The hospital may not have the brands that work best for you.

Promptly consult your ostomy specialist for any problems. This might be a decrease in normal wear time, a change in your stoma, or a problem with your peristomal skin. A good practice for all is to hydrate properly to avoid complications.

Recover from surgery and LIVE life to the fullest. Having an ostomy does not change who you are or what you are able to do. After recovery, work to strengthen your abdominal muscles to help prevent hernia risk and enjoy all your old activities including swimming. Every October UOAA holds the Run for Resilience Ostomy 5k where people of all ages prove living with an ostomy does not need to be limiting.

Advocate for yourself. You will find that not everyone is knowledgeable about ostomies. Educate others when possible but always be willing to advocate for yourself and others. You can also help to advocate on the national level by supporting UOAA’s advocacy program and taking part in events like Ostomy Awareness Day held on the first Saturday in October. UOAA works toward a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically, and psychologically.

Share your experience and tell your story. Your story has the power to help others as they begin their journey. Connect with others in person or online and offer to help the next person who has this life-saving surgery.

 

For updates on the latest ostomy resources,blogs, events and advocacy sign-up for UOAA’s monthly E-Newsletter or become a part of the official UOAA community with a national membership. For more information contact United Ostomy Associations of America at  info@ostomy.org or 1-800-826-0826.

How to Change Your Ostomy Pouch

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Basic Tips for Changing your Ostomy Appliance

 

By Wendy Lueder

 

If you feel overwhelmed by changing your appliance, please know that your feelings of anxiety will diminish over time. I know it can be difficult at first but it will become more routine with practice. Knowing just what you’re going to do can be helpful so here are some basic guidelines that you may wish to use.

  1. To start, wash your hands!
  2. Set out your equipment within easy reach on your bathroom countertop. You will need: an old bath towel on the floor and Kleenex tissues (without any lotion!) to catch any unwanted output while changing; plastic bags for clean-up; a washcloth if you don’t shower; clean bath towel; pencil and stoma measuring guide; scissors or x-acto knife if you don’t use the new “moldable” skin barrier wafers; a skin barrier wafer; Stomahesive or HolliHesive paste or product such as Eakin Cohesive Seals (preferred by this writer) a new pouch; a tail closure if you use a drainable pouch that doesn’t have the built-in Velcro closure ; hair dryer and finally, a swivel make-up mirror.
  3. Empty your pouch as normal. DO NOT rinse your pouch out when emptying. This only reduces adhesion. If you get this advice, ignore it. Rinsing out pouches is an obsolete suggestion that is totally bothersome and no longer valid for modern ostomy equipment. Empty your pouch while sitting comfortably and normally on the toilet. Put some toilet paper in the bowl first to avoid any splashing. If you use a tail clip, carry an extra one with you in case you accidentally flush yours down the toilet
  4. While holding a corner of the tape that holds your appliance to your body, gently push your skin in toward your body to remove the appliance. Pushing your skin inward is far less harsh on it than if you pull the appliance off and away. Try it and feel the difference. You only need to use an adhesive remover if: A) you have worn the skin barrier wafer a very short time and the adhesion is still very strong and/or B) your skin is irritated or tender and can be easily damaged. I personally prefer the spray adhesive removers as they leave less residue. However, I only use them if I have worn the barrier for less than two days between changes.
  5. Put the old pouch, wafer and other waste (not the tail clip!) into a plastic bag for disposal. Sealable sandwich bags work great.
  6. Clean the skin around the stoma with a washcloth and warm water or by getting into the shower and using your hands. Be gentle. Do not use scented or cream soaps as they will diminish adhesion of your skin barrier. Any waste coming out of the stoma will merely wash down the drain.
  7. Pat your skin dry with Kleenex and for best results use a hair-dryer on low setting to complete the job. The cleaner and dryer your skin is the better your skin barrier will adhere.

Measure your stoma with a measuring guide (usually supplied in the box with your skin barrier wafers) using the make-up mirror placed on the countertop to get a better look. This is especially important if your surgery is recent as your stoma will become smaller over a period of months.

For all Skin Barriers except StomaHesive Wafers measure right up next to the stoma. For StomaHesive Wafers add an eighth of an inch space between the stoma and the wafer hole. Only this brand of wafer is “stiff” and could damage your stoma if it is too close. All other types of skin barrier wafers are more flexible and won’t damage the stoma if placed right up next to it. If your stoma is oval take two measurements, one each of the larger and smaller diameters.

  1. Trace the correct size and shape onto the back of the wafer with the starter hole in the middle. Cut out the hole either with your scissors or more easily by using an x-acto knife.

There are new moldable skin barrier wafers that you do not need to cut but merely manipulate to create the correct size opening. This is especially helpful if your stoma is oval and is highly recommended by this writer. Follow the manufacturer’s directions to create the perfect size opening for your unique stoma.

  1. If you use paste, peel the paper from the wafer and apply the paste only by the width of the tubes opening around the cut circle in the wafer. Allow alcohol to evaporate for approximately thirty seconds. Unfortunately paste is poorly named. Paste is really merely caulking and has no adhesive property.

If greater protection is needed than paste can afford (such as for ileostomates who have a caustic output), try using an Eakin Cohesive Seal or similar product instead of paste. these seals have the consistency of silly putty, and lasts far longer and will not wash away from heavy output.

Small dabs of paste or small pieces of Eakin Seals are great to fill any dimples in your skin that you may have. The flatter the surface of your skin around the stoma, the better the seal. Do fill in those dimples if you have them.

  1. While leaning slightly backwards to smooth out your skin, remove paper backing from the skin barrier and apply it slowly and carefully over the stoma. Use the magnifying side of your mirror to see that you are correctly setting it in place. Remove the paper backing from the surrounding tape and smooth it out on your skin being careful not to create any wrinkles as they may latter dig into your skin.
  2. If you use a two-piece system, snap the new pouch onto the wafer. Never tug down on the appliance to see if it is secure. Instead, feel with your finger all around the “Tupperware” closure to make sure the pouch and wafer are as close to each other as can be. If you detect any space, push the pouch toward your body until you feel it close the gap. You may hear a series of clicks as you apply the pouch.
  3. If you use a tail clip, apply now. Hold your appliance in place with your hand for a full five minutes to ensure a secure seal. All skin adhesives are more effective if held in place after first application as the heat from your hand improves adhesion. If your stoma is flush to your skin, use a skin barrier wafer with built-in convexity. The convexity will gently push the skin toward your body around the stoma giving it some extra length. When the stoma thus protrudes a bit more, its output goes more easily into the pouch. The new adhesives and skin barrier wafers stay put well for days.

Some bleeding is normal when touching your stoma, but report any unusual color, size, shape, or bleeding to your Ostomy nurse. Try different products. Call your Ostomy nurse or ostomy supply companies and ask for free samples. You may have to shop around to find products that leave you feeling comfortable and secure. You should be no more aware of your appliance than you are of your underwear. Always follow any special instructions provided by your health care professional as they know your specific situation better than any general guidelines an article such as this could provide

If your abdomen is very hairy, you may want to gently shave off the hair under your skin barrier wafer. Be careful not to cut or damage your skin.

These suggestions are gleaned from years of helping ostomates cope and are just that, suggestions. They come from over thirty-five years of experience, but are in fact just the input from a layperson. I’m not a nurse, I’m an ostomate. Your healthcare professionals always know best and you need to follow their advice, not mine.
Bottom line: Your appliance should be comfortable, stay on for at least a few days between changes, odor-free (not odor resistant) and leak extremely rarely. If not, go see an ostomy nurse and change your routine until you find the products that work well for you. Best of all, studies done at Duke University verify that the longer you’ve been an ostomate, the better it gets. Problems do diminish with time and experience. You should be able to forget you’re an ostomate and get on with doing the things you really enjoy. There’s no stopping you.

Additional Tips for ileostomates only:

Try changing first thing in the morning when output is at its slowest. Many ileostomates report that eating four to five marshmallows right before changing stops all output from the stoma for several minutes. I personally have found this to be true. As marshmallows are pure sugar, please don’t try this if you’re a diabetic.
As the output for ileostomies is far more caustic than for colostomates and urostomates, don’t put off changing your appliance when needed. There are two indications you need to change, one is “itching” and the other is a “burning” sensation. If you itch, it may be merely dehydration. Drink a glass of water. If the itching continues, you need to change. If you feel a burning sensation on the skin around the stoma, change as soon as possible. The output from your ileostomy is caustic and will damage your skin. Avoid the vicious cycle of damaged skin -> poor adhesion due to damaged skin -> leakage -> damaged skin.

 

Facts About Ostomy Reversals

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Colorectal Cancer: Be informed if you are a candidate for an ostomy reversal 

 

By Joanna Burgess-Stocks, BSN, RN, CWOCN

 

  • Not everyone who has an ostomy as a result of colorectal cancer and other diseases will have the option of having their ostomy reversed.  Some people will need to keep their ostomy for life.

 

  • Your surgeon will determine when an ostomy will be reversed. There are many factors that determine a reversal such as the extent of the disease, a patient’s overall health and treatment process (radiation and chemotherapy).  Most patients with temporary ostomies will have the ostomy for about 3-6 months.

 

  • Surgery for reversal of an ostomy is usually much less involved than the surgery that you had to create the ostomy. So if you are feeling nervous, keep that in mind. A typical hospital course is 3-4 days on average.

 

  • For some patients, interrupting bowel function with a temporary ileostomy increases the chances that you will experience alterations in bowel function after reversal of your stoma. These symptoms can include rectal urgency, frequency, fragmentation of stool and incontinence. It is important that you notify your surgeon as soon as possible with these symptoms. Treatment includes behavioral strategies based on the symptoms and includes dietary modifications, incontinence products, skin care (use of barrier creams such as zinc oxide) and medications such as loperamide. More involved but helpful recommendations are pelvic muscle retraining (PMR) to regain sphincter strength and biofeedback. This therapy is done by a highly trained physical therapist.

 

  • Some physical therapists recommend PMR prior to surgery or radiation to assess muscles and teach strategies for ongoing muscle strengthening that can be carried over after surgery. This helps to address any coordination or existing weakness prior to radiation due to chemo or post-operative recovery. If PMR is recommended after surgery, it is best to wait at least 6 weeks and with the surgeon’s approval.