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Living with an Ostomy

Section 1: Ostomy Basics

How common are ostomies?


The first thing to remember when thinking about living with an ostomy is that you are not alone. According to the United Ostomy Association of America, nearly 725,000 to 1,000,000 people in the United States live with an ostomy. (1) Most people receive ostomies for reasons other than intestinal transplant, such as colorectal cancer or diverticulosis. The type of ostomy may also differ from an ileostomy, such as a colostomy or urostomy. Either way, the terminology, appliances used, emotions felt, tips, and techniques are all the same. Reference: 1. Living with an Ostomy l United Ostomy Associations of America. (2018, December 13). Retrieved June 12, 2020, from https://www.ostomy.org/living-with-an-ostomy/




What are the 3 types of ostomies?


The three basic types are: 1. Ileostomy 2. Colostomy 3. Urostomy To learn more visit the Coloplast site.




What are some basic ostomy terms?


Baseplate/faceplate: The part of the pouching system that adheres to the skin around the stoma. The faceplate can be separate from a pouch in a two-piece system, or a pouch and faceplate can be one unit in a one-piece system. Also known as a wafer. Convex: A type of pouching system that is typically used for stomas that are recessed into or flush with the abdominal surface, or when the tissue around the stoma is soft. Flange: A plastic ring on the wafer (faceplate) that allows a pouch to snap onto the wafer. Some manufacturers also refer to their wafer/faceplate as a “flange.” One-piece Pouching System: This is a pouch that is already bound to the faceplate/wafer. Peristomal skin: The skin around your stoma. It is important to keep this skin healthy for good quality of life. Pouch: This is the part of the ostomy appliance system that collects waste from the stoma. Skin Barriers: These are products such as pastes, sheets, and powders that can be used to protect the skin around the stoma. They can be applied before attaching the appliance. The faceplate or wafer is also considered to be a skin barrier as it protects the peristomal skin from stoma effluent. Stoma: Part of the ostomy that is visible on the outside of the body where waste exits. Ideally, it is bright red and protrudes 1 to 1 ½ inches off the abdomen. You should regularly check the size and shape of your stoma, as changes in the stoma may indicate a problem. Tail Closure/Tail Clip: This seals the bottom of a drainable ostomy pouch used for an ileostomy. Sometimes a tail closure is a separate plastic clamp that is attached to the pouch. Other pouches have a folding/Velcro® system that keeps contents from coming out from the bottom of the pouch. Two-piece Pouching System: This consists of a separate pouch and faceplate or wafer (i.e., the barrier that sticks to your skin) that comprise the ostomy appliance. Different styles of pouches can be attached to the faceplate without having to remove the faceplate adhered to your skin. Using a two-piece system also allows for more frequent pouch-only changes or alternate methods of cleaning out the pouch contents while the wafer stays in place. Wafer: This is a barrier or faceplate. It has adhesive on one side to stick on your skin around your stoma. The other side is designed to have a pouch attached to it.




How do I empty an ostomy bag?


If you have a closed-end pouch, then you will just dispose of the pouch and replace it with a new one. If you have an open-end pouch, then you must empty it. It is recommended to empty the pouch when it is about one-third to one-half full.

  • Everyone has their own technique for emptying their pouch.
  • It is very simple to do and can be done either sitting on the toilet or by standing over the toilet.
  • Simply open the end of the pouch slowly and allow the contents to empty into the toilet, or a container if you are supposed to be measuring output.
  • Once emptied, wipe the end of the pouch and the inner rim of the pouch, so contents do not sit on the rim once you re-seal the pouch.
  • Always be sure to wash your hands thoroughly after emptying your pouch.




How do I change my ostomy bag?


If you want to learn how to change your ostomy bag you can: 1. Read this guide produced by New York Presbyterian. 2. Watch the adult videos produced by the American College of Surgeons. 3. Watch the pediatric videos produced by the American College of Surgeons.





Section 2: Ileostomy Post-Transplant

What is an ileostomy?


An ileostomy is an opening in your abdomen that the end of your small intestine, known as the ileum, is connected to. You will have a bag attached that collects your stool and bowel contents. The opening of the ileostomy on the skin is called a stoma.




Why might my intestinal transplant surgeon give me an ileostomy?


  • Now that you have another person’s organ inside of you, your body sees the new intestine as foreign.
    • Your body has the tendency to attack the new organ.
  • You will be on medications known as immunosuppressants or anti-rejection medications that help to prevent this.
    • Sometimes your body circumvents the medications and is still able to attack your new bowel. This is called rejection.
  • The only way to monitor and diagnose rejection is by a painless procedure in which your doctor advances a thin tube, called a scope, with a pin-point camera at the end into your ileostomy (or through another scope procedure if you do not have an ileostomy). This is called an ileoscopy.
    • Your doctor takes a small tissue sample called a biopsy and examines it under the microscope to check for unusual changes that may indicate rejection.
    • A biopsy through this scope procedure of your ileostomy is the only definitive method for monitoring and diagnosing acute rejection of the intestine.
  • Please note: Each transplant center and transplant patient is unique and the creation of an ileostomy will be determined on a case-by-case basis. Check with your team to learn if you will receive an ileostomy after transplant.




How can I prepare for the creation of my ileostomy?


Many major medical centers have special nurses devoted to ostomy care. The title of this type of nurse is "Certified Wound, Ostomy, Continence Nurse (CWOCN)." Ask your intestinal team if you are able to meet with one of these nurses prior to receiving your transplant or intestinal rehabilitation surgery. They will be able to help answer questions, educate you about ostomy care, and look through the wide variety of ostomy appliances and supplies that may suit you best.

There is no way of predicting exactly what your needs will be post-transplant, such as, you cannot predict if you will have a high output or low output ostomy. It can still be helpful to familiarize yourself with all of this information before the transplant, so you don’t feel so overwhelmed post-transplant.

The ostomy nurse can also help determine a place on your abdomen that may be the best place for the surgeons to place the ostomy based on the features of your body. They can draw the spot with marker and you can take a picture, so when the call comes, you can be prepared to re-draw the placement.

This may not be an option for all patients or transplant centers, however, it is worth inquiring about.

If this is not an option, many ostomy supply manufacturers have helpful tools to help determine the best appliance for your body. Coloplast has three very self-assessment tools here.




How often will I be scoped?


  • This varies per transplant center and depends if your transplant center conducts surveillance biopsies, or just does biopsies when you have symptoms of rejection.
  • If your center does surveillance biopsies, the first scope post-transplant usually occurs about 7-10 days after your surgery.
    • After that, you should expect 1-2 scopes per week for the first 3-6 months post-transplant, or as indicated by your transplant team.
    • Once you are 6 months out, if you are stable, scopes may only be required every 3 months, or possibly, every 6 months. The frequency is individualized and determined by your transplant team.
  • Please note: Some centers may only conduct scopes if you exhibit signs of acute rejection. Additionally, not every center creates an ileostomy during transplant. Check with your transplant team to determine their protocols.




Will I have my ileostomy forever?


This is a question that is different for every person. Ideally, if you are stable and have a functioning rectum, most people are able to have a reversal of their ileostomy 6 months to 1-year post-transplant. This is a minor surgery and the hole left from the ostomy usually closes on its own. By reversing your ileostomy, you will now pass stool through your rectum, like normal.





Section 3: Additional Resources

Helpful Download from Transplant Unwrapped: Ostomy Guide


Sign-Up of Log-In to Access: Guide to Choosing Your Appliance: This breaks down the different features of ostomy appliance systems and helps you determine which is the best fit for you. It also includes a 'determination table' at the end to write down your final choices to bring with you to your appointments.




Helpful Websites: Living with an Ostomy


1. United Ostomy Associations of America (UOAA): Extensive educational materials on living with an ostomy. 2. The Phoenix: The official publication of United Ostomy Associations of America. Get answers to the challenges of living with a colostomy, ileostomy, or urostomy. 3. Coloplast's Educational Pages: Educational materials covering living life with an ostomy. 4. Convatec's Educational Pages: Educational materials covering living life with an ostomy.




Transplant Unwrapped Patient Video Q & A


Patient Video Q & A Part 5: Marea explains the basics of an ileostomy after transplant. Read and watch more personal experiences in our Learn From Others Section.




Transplant Unwrapped: Support Programs


Support Programs: Visit the Transplant Unwrapped Support Programs page to get your questions answered, speak with others in similar situations, and feel well-supported during your medical journey.