If your large intestine is removed or resting, you’ll need an opening for the stool to pass through. This is an ileostomy. Ileostomy surgery is a life-saving surgery. This surgery redirects the intestines to the outside of the body. It is performed when a person’s quality of life is so poor it offers relief. An ileostomy is necessary for many reasons including birth defects, cancer, inflammatory bowel disease, diverticulitis, incontinence, etc. Some of the terms related to this topic include ileostomate, bowel, ileostomy, and stoma.
What is an ileostomate? An ileosotomate is a common name describing someone who has an ileostomy. What is the bowel? The bowel is another word for the small and large intestines. What is an ileostomy? An ileostomy is a hole on the surface of the belly that allows stool to pass through. The end of the ileum is brought through this opening to form a stoma. What is a stoma? The word ‘stoma’ is Greek and means ‘an opening into or out of the body’ or ‘mouth’. A stoma is an intestine that is brought to the skin’s surface in the best possible, pre-determined location. A stoma is created when a person has surgery resulting in the bowel being brought to the surface of the abdominal wall. A stoma is an opening in your abdomen that allows waste to exit your body, rather than going through your anus. What is an ileostomy pouch? An ileostomy pouch is a waterproof pouch used to collect waste from the intestines. The bodily waste passes through the stoma or opening in the abdomen and into the ileostomy pouch.
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It will take time to get used to but you can do many of the same activities you enjoyed before your ileostomy. Some people worry about negative reactions from friends and family. When you’re out in public your clothing covers your ileostomy, so nobody will know about it. Adapting to an ileostomy can be difficult, people must learn how to control their stool and must learn how to minimize odor without feeling like a social outcast. Everyone has the right to be clean, dry, and odor-free. To resume a normal lifestyle, people must learn about ileostomy management. Quality of life after an ileostomy improves if people understand about the surgery required and learn about self-care. Once people know how to care for themselves, they can resume full, active lives. Time, patience, and a good sense of humor can help them live life and enjoy it despite the ileostomy. Having an ileostomy is overwhelming and scary at first. But, people adjust and lead active and productive lives. People with an ileostomy maintain relationships just like before. Some people worry about the people around them having negative reactions to their ileostomy and stoma. Only certain people need to know about your ileostomy surgery. People can choose to share with others about their ileostomy or not. Once you learn to care for your ileostomy, you’ll be able to participate in your regular activities including swimming, hiking, playing certain sports, eating in restaurants, camping, traveling, and working certain jobs. Once a stoma has formed you should be able to live a normal healthy life. Caring for an ileostomy can represent a significant change in your life. It can take time to adjust to your ileostomy. Here is some advice on how to deal with and live life as an ileostomate.
People who have an ileostomy surgery cope with both the physical and psychological changes. This is a big life-changing event in their life and they need to adjust. You have a pouch to collect stool on your abdomen. As you adjust to living with an ileostomy and get used to how it looks and works, you’ll feel better about your body. It helps if you: look at your stoma to get comfortable with it, and remind yourself of the positives of your ileostomy. It’s a given for most people to feel depressed and anxious after this life-altering procedure. But talking to someone may help whether it be someone you know, a support group, or a professional psychologist. You can find specialized clothes online specifically for ileostomies to make you feel more comfortable. You can buy underwear, bathing suits, and wraps that can hold your ileostomy bag. Snug undergarments like stretchy underpants, t-shirts, or camis give extra support, and security, and help conceal pouches. A pouch cover adds comfort by keeping the pouch from resting on the skin and hides your pouch as well.
When you have to have an ileostomy, you face complex lifestyle challenges. You might have concerns about the issues of health and hygiene. But as I said before you’ll also have emotional and psychological concerns. You need to understand how to remove waste from the pouch and how to keep everything clean with no infections. Regular maintenance of the ileostomy pouch helps prevent accidents and embarrassment. Not only that it will also safeguard your health. Accessories enhance wear time, comfort, and management. These accessories include skin prep, stoma past or strip paste, adhesive rings and sprays, and convex rings. These are designed to improve skin if your surface has dimples, folds, a flat stoma, or problems with leakage. Stoma powder is another product to use for sore skin as well. Other accessories include ileostomy belts, ileostomy deodorant drops or sprays, and oral deodorant pills.
Eating is an important part of recovery, but food tolerance can vary. Finding foods that are best for you requires trial and error, and you will return to a normal diet without thinking about your ileostomy. An ileostomy interrupts the digestive process. It impacts the absorption of nutrients. After surgery, your bowel needs to rest. Returning to a “normal” diet begins when moving from fluids to solid foods. You can return to the diet you enjoyed before your ileostomy. There isn’t a special ileostomy diet, but certain foods affect the output from a stoma differently. There are foods that can make you gassy, and cause diarrhea or constipation. You need to learn which foods agree with you and which ones don’t. It's wise to add new food one at a time in order to tell which foods increased gas or odor or which ones didn’t agree with you. It is important to avoid high-fiber foods, like whole grains, dried beans, and raw vegetables and fruits. It helps to write down your reactions to certain foods. It's normal to have gas, but certain foods influence it. You can buy products to help reduce gas, like Beano. Charcoal filters are also available on pouches. Before leaving the pouch the filter deodorizes the gas. Foods that cause gas in one person don’t cause gas in everyone. You should only notice odor when you are emptying your pouch. Pouch odor is reduced with liquid pouch deodorants like Brava Lubricating Deodorant Drops made by Coloplast. If you notice an odor, check your pouch to see if there is a leak. Eat solid foods one at a time. If they cause unwanted symptoms stop eating them. You should drink 10 to 12 glasses of water every day. Water is important so that you don’t become dehydrated. With an ileostomy, you get diarrhea and watery stools sometimes which can cause dehydration. You need to empty it more often if your pouch fills more quickly. Foods that thicken output include pudding, creamy peanut butter, potatoes, bread, pasta, applesauce, cheese, and rice. Large foods get stuck more often. This causes a blockage. A food blockage causes cramps, pain, and watery stools with odor. Avoid fiber foods like oats, citrus fruits, apples, and beans. These fiber foods cause severe cramping or food blockage. Certain foods will cause you to have a food blockage. If you have a blockage because of a certain food, for a while avoid that food. Adding foods back into your diet one at a time, in small amounts, helps you know if the food bothers you or doesn’t agree with you. Foods that cause a food blockage include nuts, popcorn, coconut, dried fruits, celery, mushrooms, foods that have fibrous peels and raw and crunchy vegetables, carrots, broccoli, cauliflower, and Chinese vegetables. You can avoid a food blockage by eating slowly, chewing your food frequently, and drinking water with your meals frequently. Drink hot tea, take a hot shower, and run water on your abdomen to relax your abdominal muscles. It’s important to enjoy food as a part of life.
When having an ileostomy, people enjoy swimming, surfing, scuba diving, and relaxing in a hot tub. I understand the anxiety some people might have from worrying about leaks and that keeps people out of the pool. There are no restrictions to swimming. Here are some solutions to some common concerns. I’m afraid that my pouch will leak or my wafer will loosen while I’m in the water. Your pouch is waterproof, it’s designed not to leak. If you have concerns about your output, eat hours before swimming, and empty your pouch before taking a swim. If you are hesitant about your wafer, take a practice soak. Avoid applying a new barrier, wafer, or pouch right before swimming. Using waterproof tape or water-specific barrier strips is not necessary, but can ease your mind. There are a variety of ileostomy supplies for swimming and you should find a solution that works best for you. If your pouch has a vent, put a sticker over the air hole so that the filter works. What can I wear or do to help conceal my pouch and keep it secure? You can wear either a patterned or dark color because it is less seeable. Options for women include patterned and boy's leg one-piece swimsuits. For a two-piece swimsuit, either wear a mix of tankini tops high-waisted bottoms, or boy shorts. You can also look for a swimsuit with a ruffle or skirt to conceal your ileostomy. Options for men include a higher waist for swimsuits or swimsuits with longer legs. Stretch fabric undergarments and swim or surf shirts also provide that needed support. Ileostomy bands and wraps are also used as well. Some ileostomates are comfortable with wearing a swimsuit with pouch covers or just a pouch along with a swimsuit because they are comfortable with their bodies. There is also swimwear and accessories specially made for ileostomates. What do I do if I am approached by pool personnel concerned that my ileostomy is an open wound or believe ileostomy pouches are not allowed in pools? Stay calm and educate them. No one will know you have an ileostomy. Just start swimming.
Plan in advance to avoid problems while traveling. Some suggestions are pre-cut pouches, packing ileostomy supplies in two places, taking extra supplies and always being prepared for the unexpected, and requesting Passenger Support from the TSA.
People living with an ileostomy are able to work just like everyone else in any job with no restrictions. Embracing a new normal is key to living life. The daily norm for most people means returning to work. When you return depends on your recovery and your job. It is your choice whether to tell your employer or co-workers depending on your work situation, but it helps to inform others if you require breaks or other accommodations. Your co-workers will not realize you have an ileostomy unless you tell them. Always be prepared. Have a change of clothes and your ileostomy supplies. Know your rights: You have legal rights under the Americans with Disabilities Act and the U.S. Rehabilitation Act of 1973, which prohibits employment-based discrimination. Dispose and empty your pouch properly: Find the best restroom and changing facilities to empty and change your pouch. Find the best clothing for your job: Consider loose clothing when sitting for a very long time, or for a very active job, try a stoma belt. Don’t stress out over stoma noise: If your stoma makes noise, relax, it is a normal bodily function. You might be the only one who notices it so don’t bring more attention to it than you have to. Hydrate. With preparation and patience you’ll be confident, and feeling better than before your ileostomy.
The most important thing to know is, that an ileostomy is a life-saving procedure. It is not the end of the world, it is the beginning of a new one. Living with an ileostomy can be a major change, but knowing how to live with it and how to deal with it can help you adjust to it.
Full Disclosure/Disclaimer
I was born with a genetic disorder that resulted in numerous polyps developing in my digestive system, the condition is called FAP. It had not affected me other than having a colonoscopy every year. But then before I was a freshman in high school my condition had gotten worse. In order to prevent cancer I had to have my colon removed. Initially, I didn’t need the ileostomy, but then I had some unforeseen complications and had to have a second procedure to correct the first one. Before my freshmen year in high school, I had an ileostomy. I did eventually get the operation reversed because it was only a temporary one. I picked this topic because I am very passionate about it.
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