Ostomy FAQs: Support Group, Eating, Hygiene, Travel, Relationships & More
Will people know I have an ostomy?
With good self-management, wardrobe choices and pouching systems, people will rarely (if ever) notice your ostomy. Many people find that wearing snug fitting garments over the pouch provides concealment by allowing the contents to be equally distributed throughout the pouch. There are wraps and other clothing options that can provide a flat profile. Your ostomy nurse will discuss options with you. Watch our video on how to conceal your ostomy pouch.
A correctly applied pouching system will contain the odor of the stool; no odor will be present until the pouch is opened. An odor exists when the pouch is emptied, but that takes place in the washroom. If you are concerned about odor when emptying your pouch, you can place odor eliminator drops inside the pouch.
Online Ostomy Support Group
Our ostomy nurses and educators lead an online support group once a month to provide information and support for new and future ostomy patients, caregivers and families. We bring in guest speakers and supplier representatives, and coordinate round table discussions to share the most up-to-date care options. Additionally, wound nurses attend every meeting to provide technical support and advice.
Our group meets every third Wednesday of each month at 7PM (Central). Meetings are held over Zoom.
Learn how you can join us at our next meeting
Eating, Drinking and Exercise
Should I drink more fluids because I have an ostomy?
Not necessarily. Whether you need additional fluids will depend upon how much bowel has been removed at the time of surgery. You should discuss your fluid intake with your ostomy nurse.
Are there food restrictions for people with an ostomy?
In general, if you have other medical conditions that require a special diet, you'll stay on that diet after ostomy surgery.
During the 4-6 week recovery period, it is suggested that you follow a low-residue diet, until bowel edema (swelling) has resolved.
Will I need to change my physical activity when wearing a pouch?
Depending on the type of physical activity, you can expect no major changes when wearing a pouch. There is no reason that you cannot resume your everyday activities.
Hygiene
How do I take a bath or shower while wearing an ostomy bag?
You can shower or bathe with or without a pouching system on. The adhesive on the outside of the pouching system adhesive is water resistant. After showering, towel off the adhesive and pouch. If you prefer to shower without the pouching system in place, the water from the shower will not harm the stoma.
What should I use to cleanse the skin around my stoma?
Many soaps contain moisturizers that can prevent good adhesion of the pouching system to the skin. If you choose to use soap on the skin around the stoma, rinse well before drying and applying the pouching system. Most people with a stoma wash the skin with warm water and avoid soap.
Talking with Friends and Family about Your Ostomy
Should I talk about my ostomy with others?
If and when you share information about your ostomy is your choice. Since your ostomy will be concealed under clothing and you will not have a limit on activities, other people will not know you have an ostomy unless you share that information. Some people feel they have no reason to discuss their ostomy; others provide friends with an explanation of what an ostomy is and why the surgery was performed.
With Friends
How you handle discussing your ostomy with others is a personal decision. It is up to you when and with whom you reveal that you have an ostomy. Some people with an ostomy feel they have no reason to discuss it. Others describe in simple terms what an ostomy is to people they feel should know.
With Children
Young children need a simple explanation of what the stoma is and why the surgery was performed. It may be best to allow them to ask questions about the surgery after you provide them with a simple explanation. Most children are curious about the change and need to understand that the gastro intestinal system has been "rearranged" to allow the stool to drain in a new location.
With Partners
You will be physically ready to have sexual relations when you have healed from the surgical procedure and you have checked with your healthcare team. Be sure that your partner has an understanding of the change in your body and that while there is a change in the GI function, normal sexual relations can be resumed. It will be important to let your partner know that the stoma has no nerves and thus no sensation, so you will not be harmed by body contact over the stoma.
How can you be intimate if you have a stoma?
Emptying the pouch prior to intimacy is a good idea. There are short two-piece pouches that can be used during intimacy; some people prefer a shorter pouch to keep it out of the way. Other people use a pouch cover (made of a cotton or silk like material) for concealment or wear a wrap around their abdomen and pouching system to keep the pouch secure during sex. There are several manufacturers that make products for pouch concealment during intimate activities.
Recreation and Travel
Can I go swimming with a stoma?
Yes, you can swim at the beach or pool, just as you always have. Salt water, fresh water and chlorinated water are all okay. Your pouching system is water-resistant. When choosing a bathing suit, consider the following: Women may find that a one-piece with a control top or "tummy control panel" keeps the pouching system flat. A two-piece "tankini" top of bathing suit may also hide the pouch, with the bottom part of the suit providing coverage over the pouching system and the top covering over the bottom. Men can wear a swim shirt or sport concealment device to flatten the pouch.
Is travel restricted for people with a stoma?
There are no travel restrictions caused by a stoma. However you'll want to take steps to ensure your comfort. Start by getting a travel card from the United Ostomy Associations of America, which can be used when going through airport security. When going through airport security, security agents may notice the pouching system. When/if this happens, you can show them the card. If you need to be screened further, ask for a private screening.
We recommend that you pack extra ostomy supplies in your carry-on-luggage in case your luggage is lost or delayed. Pre-cut several pouching systems so that you don't need scissors on a plane. If possible, determine where you can find ostomy care at your destination, in case you have medical emergencies while traveling.
[MUSIC PLAYING] Living with an ileostomy has many challenges. One challenge is preventing dehydration and managing output. If you have an ileostomy, a common reason for having to go back to the hospital and hospital stays is dehydration. After this video, you will be able to know the signs and symptoms of dehydration and how to prevent and treat it. You will be able to describe the amount of output and the consistency or thickness. You will also know the kinds of foods that can slow down and thicken output.
To understand why persons with ileostomies are at risk for dehydration, it is important to go over how the GI tract works. The GI tract begins with the mouth and ends with the rectum. Food enters the mouth and is chewed. It then moves down the esophagus and into the stomach where it is broken down more. It then moves from the stomach to the small intestines. The job of the small intestines is to absorb nutrients from food and drink. From the small intestines, food travels to the colon. The job of the colon is to absorb water and salts and keep you hydrated.
When you have an ileostomy, the food you eat and drink does not travel to the colon. The small intestines has to do the work of the colon. But in time, your small intestines will adapt and change. It is important to know how much output is too much and what normal thickness of output looks like. Your output needs to be the thickness of oatmeal or applesauce for over 80% of the time. You will also need to be emptying your pouch when it is 1/3 to 1/2 full or about five to six times per day. If your output is watery most of the time and you are emptying your pouch more than six times a day, that is a problem, and you need to contact your health care provider or ostomy nurse.
When you have an ileostomy, your body does not absorb as well, and you are at risk for dehydration. To prevent and treat dehydration, you must be able to know the signs and symptoms of dehydration. The signs and symptoms of dehydration are nausea or feeling like you want to throw up, headache, dizziness, weakness, heart pounding, muscle cramps, not urinating or peeing as often, dark urine, and dry mouth. It is recommended that you drink 8 to 10 glasses of fluid a day. You must never drink unless you eat something first, even if it's just saltine crackers or pretzels. The food you eat acts like a sponge and slows the movement of liquids in your small intestines.
If you have any signs of dehydration, you must begin to treat it fast. You can do this by drinking an oral rehydration, such as Gatorade G2. Mix 4 cups of Gatorade G2 with a 1/2 a teaspoon of salt and drink it over a period of 24 hours. Remember not to drink without eating something first. You must also contact your health care provider or ostomy nurse, if you have any signs of dehydration.
Foods such as rice, potatoes, white bread, pasta, pretzels, crackers, bananas, peanut butter and toast will help slow and thicken output. You must include a starch item in each of your meals. Keep your pantry shelves stocked with saltine crackers, bread, rice, and pretzels.
In summary, persons with ileostomies are at risk for dehydration. It is important for you to know the signs and symptoms of dehydration and to understand what normal output looks like. Hydration solutions such as Gatorade G2 are used to treat dehydration. Starch-based foods must be included in each meal and will help thicken your output. Remember to call your health care provider or ask demeanors, if your output is watery most of the day, if you are emptying your pouch more than six times per day, or if you have any signs of dehydration.
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Additional Resources
Our ostomy nurses and educators lead an online support group once a month to provide information and support for new and future ostomy patients, caregivers and families. We bring in guest speakers and supplier representatives, and coordinate round table discussions to share the most up-to-date care options. Additionally, wound nurses attend every meeting to provide technical support and advice.
Our group meets every third Wednesday of each month at 7PM (Central). Meetings are held over Zoom.
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