An ileostomy is a surgically created opening on the abdomen that allows stool to pass out of the body and into a specialized pouch. This stoma type gets its name from the part of the digestive tract it is formed from, the ileum. The ileum is the last section of the small intestines and is the connection to the large intestines or colon.
There are many reasons that an ileostomy may be necessary, and these different causes affect the course of action for that specific patient and their ileostomy. Some common causes that may lead to the individual requiring ileostomy include:
- Inflammatory Bowel Disease (such as ulcerative colitis, Crohn’s disease)
- Birth defects
- Motility disorders (such as gastroparesis, pelvic floor dyssynergia)
Temporary vs Permanent Ileostomies
Depending on the cause, an ileostomy may be temporary or permanent. For example, if a patient living with Crohn’s disease needs to have a diseased section of their colon removed, an ileostomy may be performed to allow the bowel to rest. The ileostomy acts as an early exit so that no stool is passing through the anastomosis (two parts of the bowel that are reattached after resection).
In the case of a temporary ileostomy, the surgeon may opt to create a loop ileostomy. This type of stoma is formed when both upstream and downstream openings of the bowel are brought through the abdomen. It can be done with both small and large intestines and is generally performed when the stoma will be temporary as it is easier to reconnect. The stoma has two distinct openings with only one functioning to allow stool out of the body and into a pouch adhesively attached to the abdomen.
How long a temporary ileostomy will last often varies widely from patient to patient, but a good rule of thumb is to expect to live with the ileostomy for 3 to 6 months.
A permanent ileostomy may be formed when the option of a reversal, or continent ostomy, is not available to that patient. For example, if a patient is diagnosed with colorectal cancer, they may need to have their entire colon and rectum removed. This means that the patient will live with their ileostomy for the rest of their life. This form of ileostomy is typically an end stoma, meaning a stoma that is formed when only one portion of the bowel is used to form the stoma.
How does an ileostomy work?
A person living with an ileostomy has no control over when their stoma will expel stool. Unlike the anus, there are no muscles with the ability to squeeze or shut off the flow of output. An ostomy appliance will need to be worn at all times, except during bag changes or bagless showers, to collect the output that is produced.
Luckily the stoma itself has no nerve endings, so no discomfort or pain should be associated with the stoma. The stoma is made of the mucosa, or lining, of the small intestines, and should look pink or red and should be moist, similar to the appearance of the inside of your cheeks. Every stoma will look different, they can come in a variety of sizes and can sit flat against the skin, or stick out. There are different ostomy appliances that will work with the variety of stoma shapes and sizes out there.
A Wound Ostomy Continence Nurse, or WOCN for short, is specially trained to help you choose the best appliance for your specific stoma. When possible, it is highly recommended to visit a WOCN prior to your ostomy surgery. They can help educate you about stoma care, provide samples of ostomy supplies, and can help choose the best location for your surgeon to place the stoma before surgery.
Because the ileostomy is formed using the small intestine, food is no longer processed through the colon. The colon is responsible for water absorption, along with over digestive duties. Once the colon is no longer part of the digestion process, the small intestine needs to adjust and take up these responsibilities. The small intestines generally are not as proficient at absorbing water as the colon was, so the output will likely be more liquid or pasty. A drainable pouch may be worn to allow for it to be emptied multiple times a day. The number of times it will need to be emptied each day will vary from person to person and depends on what food and liquids are consumed on that day, but generally range from 5 to 8 times a day.
What supplies do you need for an ileostomy?
When referring to ostomy supplies, they are generally two categories: Required Products and Accessory Products.
The absolute minimum in vital products would be the ostomy pouching system. They come in a wide variety, so finding the right products for you can be extremely important. Here is a quick breakdown of these options:
1-piece appliance – This describes a pouching system where the barrier and pouch are permanently attached. The entire system will need to be removed to change the appliance.
2-piece appliance – This describes a pouching system that is separated into two pieces. The barrier (also called a flange, baseplate, or wafer) is the first piece and sticks to the skin, the pouch is the second piece and has to be manually attached to the barrier. This attachment is either a plastic mechanical coupling or an adhesive coupling. A benefit of a two-piece system is that the pouch can be removed/replaced without the need to replace the barrier as frequently.
The appliance is an absolute necessity, however, there are other vital products that may be needed for the care of your ostomy. Here is a quick breakdown of these products: (For a more detailed list with descriptions see our ostomy product guide here)
- Adhesive Remover
- Barrier Paste Strips
- Barrier Wipes/Spray
- Barrier Ring
- Barrier Extenders
- Stoma Powder
- Stoma Belt
- Stoma measuring guide
- Stoma paste
There are also products that are not essential but can improve your quality of life with your ostomy, we call these accessories. When referring to ostomy products, accessory usually refers to extra/optional products that are used to amplify an ostomates quality of life. Some examples are:
- Support Wraps
- Cloth/Decorative Pouch Covers
- Stoma Guards
- Support Belts
- Ostomy Garments/Underwear
Living With An Ileostomy
The details of how to care for an ostomy are not the only details to think about when an ileostomy surgery is being discussed, it is just as important to be educated on living with an ostomy. Ostomates can lead very fulfilling lives, they hold jobs, work out, wear regular clothing, and have positive social and sexual lives. Having an ileostomy should never hold you back from what you want to accomplish, you just may need to make some adjustments and often have a game plan.
Having an ileostomy should never keep you interacting with others, whether it be socially or sexually. The formation of an ileostomy itself generally does not cause any sexual dysfunction, the removal of the rectum however may. If you feel like you are experiencing any sexual dysfunction it is certainly something that you should discuss with your doctor. Socially you may choose to discuss your ostomy with your family and friends or not, but helping to educate those around you can certainly make it easier if you need some accommodations.
When you start to make plans with family and friends or are about to head back to work after surgery and recovery, you may wonder what you can wear. The good news is that you can wear almost everything that you wore before your ostomy placement. You may choose to pick clothing that conceals your ostomy, or you can choose to pick clothing simply because you like them. It’s completely up to you. Some considerations when picking outfits post-surgery may be: making sure the waistband does not constrict the stoma, that the clothes or undergarments make you feel secure while moving around, and that the clothes allow output to fall down to the bottom of the pouch.
Once healed from surgery many ostomates are able to continue working whatever job they held before surgery. With the exception of jobs that focus on lifting heavy things often or cause rough contact of the abdomen, like high-impact sports, an ostomate can have a successful career.
Exercise is going to be an important part of any ostomate’s journey. Once you are cleared by a doctor, you can resume all the sports and activities that you enjoyed pre-surgery. There may be some precautions to take depending on the activity, but often with some accommodations, like a stoma guard, these may also be enjoyed.
Swimming and showering/bathing are also activities that you will not have to give up on because of your ostomy. Modern ostomy appliances are waterproof and built to hold up to repeated exposure to water. If you use a bag with a filter you will want to cover that filter with a provided sticker to assure it does not become wet. You can also choose to shower without a bag on, depending on the frequency of your output. There are also waterproof ostomy wraps and support garments that some may choose to wear during water activities.
As far as diet is concerned, you may need to follow a specialized diet during recovery from surgery. Your doctor or nurse should instruct you on what diet to follow and for how long. Once you are cleared to resume your normal diet it is recommended that you slowly reintroduce new foods, in small quantities, to ensure that you tolerate them with your new ostomy. As an ileostomate you may notice that you become dehydrated more easily. This is because your colon was responsible for water absorption, so now your small intestines are trying to take over that duty. It’s important to stay hydrated by drinking plenty of water and specifically electrolyte drinks. Liquid consumption, as well as chewing thoroughly, can also help you avoid an intestinal blockage. (For more detailed information on diets and ostomies see our post about Ostomy & Diet: What will I be able to eat?)
An important part of your journey as an ostomate will be building your confidence after surgery. It will be challenging, but the most important thing to remember is that your ostomy should never hold you back. Confidence will get you back out into the world and allow you to live your most positive life.