Ostomy care & IBD

After ostomy surgery, you will work with your care team to learn how to care for your ostomy. This will include understanding how to change your ostomy appliance, care for the skin around your stoma, avoid leaks, manage your output, manage odor, and more.
Ostomy appliances consist of a few parts: 

• The ostomy pouch is the bag that collects stool and some can be opened and drained several times during the day. Others are closed and disposed of each time they are full.
   
• The flange (also known as a face plate, wafer, or skin barrier) is what secures the pouch to the abdominal wall.  The flange adheres to the skin around the stoma and protects the skin from irritation from the stool output.

Ideally, your appliance will remain attached to your abdomen for approximately 3-7 days (known as your wear time). Your appliance is emptied approximately 4-5 times daily. You should empty your bag regularly and avoid waiting until it is completely full, which can cause the pouch to get heavy and loosen the seal, potentially causing a leak. Remember, everyone’s body type and skin are different and everyone can have different wear times.  

 
Ostomy appliances vary based on what type of surgery was done.  In general, ostomy appliances come as either one piece (where the pouch and the flange are connected permanently) or a two-piece appliance (where the flange and the pouch can be separated allowing the patient to change the pouch without changing the flange).

Following your surgery, your OMS will help you understand the different types of pouching systems, select the best type for you, and explain all the steps of changing your pouch. It’s always a good habit to wash your hands properly prior to and after handling any of your appliance parts. When you remove the one-piece system, or the flange, gently peel it away from your skin – starting at the top and working downward while pressing against your surrounding skin. You can use an adhesive remover to help peel away the flange. After the flange is off, inspect your skin for any breakdown (redness, rash or change in color), clean and dry the area, and apply a new flange.  When the change is complete, a good tip is to hold your hand over the pouch, for a few minutes, to help the barrier of the flange to adhere to the skin.
 

It’s important to take special care of the skin around your stoma. It should look like the skin anywhere else around your abdomen; however, over time though, the skin around your stoma might appear darker or lighter – and this is normal. Water should be all you need to clean the skin; but, if you would like to use soap, be sure to use a very mild cleanser with no oils or scents. A small amount of bleeding can happen if you brush up against the stoma – this is also normal. This occurs because the lining of the intestine – what your stoma is made from – can be fragile (similarly to when you brush your gums).

• Avoid using lotion, cream, powder, wipes, ointments, or rubbing alcohol around your stoma unless advised by your healthcare team as that can impact the application of the skin barrier
• You can use an adhesive remover around the stoma to help remove the skin barrier but do not apply on the stoma itself
• If you experience irritation, rash, redness, or broken skin, reach out to a qualified health professional like a WOCN

You want to feel secure in your pouching system and enjoy your life without worrying about having a leak. However, leaks can happen and can be caused by skin irritation, sweat/excess water underneath the barrier, too much gas in the pouch, or from a pouch being too full. 

It’s a good idea to empty your pouch regularly (when it’s a third to halfway full) and before you change your appliance. Some people prefer emptying their pouch at a set time in the day, such as first thing in the morning.  You want to avoid waiting until it is completely full, which can cause the pouch to get heavy and loosen the seal.

Here are some helpful tips to avoid leaks:

• Prioritize skin health and make sure your skin is clear of any irritation
• A skin barrier ring or paste can be used with the flange as extra protection to ensure your pouch fits properly around the stoma
• When removing your flange, gently peel it away from the skin, starting at the top and working downward while pressing against surrounding skin
• Change your one-piece system or flange on a regular basis
• Ensure that your ostomy pouch is secure before exercising or participating in physical activity. There are support garments and ostomy wraps that you can get to help keep your pouch securely in place.
• If you are still experiencing persistent leakage, contact your OMS or WOCN for guidance.

Your output (stool) volume and consistency will depend on the type of ostomy you have, and it is important to understand when your output is too high. The function of the colon is to absorb fluid and electrolytes from the stool. In the immediate post-operative period following removal of the colon (colectomy), the ileostomy stool output can be as high as more than 1.5 liters per day. Generally, the goal for stoma output is between 800 and 1,200 ml in 24 hours period.

For children, output is assessed by their current weight, so it’s best to talk to your child’s doctor if you have any concerns. Active disease/flaring, high sugar intake, infection (such as Clostridiodes difficile or C. diff), or short bowel syndrome can be some causes of high output. 

If you are experiencing higher than normal output – here are some dietary considerations:

• Try eating small meals during the day or snacking more frequently instead of three full meals
• Limit your sugar intake
• Increase your intake of complete carbohydrates (pasta, rice, potato, bread products)
• Drink fluids AFTER your meals and do not drink fluids alone
• Try rehydration fluids (fluids with added electrolytes) as water itself does not get directly absorbed but requires sodium/glucose/amino acids.

If you think you may be experiencing high output, talk to your healthcare provider about your options, such as an anti-diarrheal or prescription medication. 

Ostomy appliances are  air-tight, and you should only notice odors when changing or emptying your pouching system.  Should you notice an odor, this may be a sign that leakage is about to occur. If you are concerned about preventing odor, you can consider the following: 

• Ensure that your pouching system is a good fit and empty it regularly (when it is a third to halfway full). If your bag is too full, it can cause the bag to get heavy and loosen the seal on your appliance.
• Monitor your body’s response to food and beverages as certain items may cause an increase of gas in your bag. Asparagus, beer, broccoli, fish, garlic, and many fatty or processed foods all may cause odor.   
• An odor eliminator can help control odor inside the pouch. Try using deodorizing pouch drops, tablets, or gel sachets but only use products that are specifically designed for use with an ostomy.
• You can also use a pouch with an odor reduction filter that can absorb odor while allowing air to escape the pouch.

Immediately following your surgery, eating a diet that's low in insoluble fiber, low in fat, and low in added sugars may help your GI tract to rest and heal. This includes foods that are easier to digest, produce less gas, and help minimize cramping, diarrhea, and potential obstruction. It is important to maintain this diet for four-to-six weeks after surgery and talk with your doctor about when to return to adding new foods. Click here for more detailed information on diet, nutrition, and IBD. 

Here are some general guidelines for eating with an ostomy:

• Eat five-to-six small well-balanced meals daily instead of three large meals daily as this tends to help reduce gas
• Avoid drinking from straws as that can contribute to gas production
• Eat slowly and chew your food well
• Avoid foods that are difficult to break down due to their tough texture as they may cause a blockage/obstruction. Some examples include celery, grapes, raisins, cruciferous vegetables, and mushrooms. Also, slowly increase the number of fiber-containing foods (fruits, vegetables, whole grains, beans, whole nuts, raw seeds) in your diet to help prevent obstructions. Get more information on blockages/obstructions.
• Replace fried/greasy foods with low fat alternatives, such as air fried or baked foods. Choose lean sources of protein, like poultry, fish, eggs, smooth nut butters, and tofu, more often as these tend to be better tolerated.
• Avoid sugar alcohols (sorbitol, mannitol, etc.), artificial sweeteners, and highly sugary foods and beverages (soda, ice cream, cake, etc.) as they may increase output
• Add foods that tend to thicken up stool, such as bananas, oatmeal, peeled potatoes, rice, bread, pasta, applesauce, creamy peanut butter, or chia seed pudding, to all your meals  
• Stay hydrated – drink eight-10 glasses (8 oz) of fluids throughout the day, ideally sipping fluids in between meals. You may need to add electrolytes to help prevent dehydration. Your urine should appear pale yellow or clear.  
• Avoid alcoholic and caffeinated beverages  
• Add new foods gradually to learn which may produce excess gas, odor, constipation, or loose stool
• View the UOAA’s Eating with an Ostomy Guide 

There is no need for any special ostomy clothing – wear whatever you are comfortable in! Some patients find that tights or leggings add extra support and that even high waisted pants feel more comfortable but that is entirely up to you. There is also intimate attire made especially for ostomates that some find helpful.

Water does not impact your stoma – so you can bathe or shower with your pouch on or off. If you do leave your pouch off, just be sure your skin is entirely dry before putting on your new appliance as it will only stick to dry skin.

If you are just starting or getting back into exercise after surgery, always consult with your healthcare provider and start slowly. You may want to consider wearing supportive clothing or a stoma guard to keep your pouch in place.  

Worried about sweating when you exercise? If you pouch fits properly, it should not irritate your skin. However, certain exercises or activities may cause more sweat (hot yoga, outdoor sports in hot/muggy weather) and you may want to consider ostomy wraps or guards to provide more security when doing these activities. Don’t worry about swimming – swimming is safe and having an ostomy shouldn’t keep you from beach activities or a dip in the swimming pool. Your ostomy pouch is water resistant and is designed not to leak. If you have output concerns, eat a few hours before swimming and empty your pouch just before going in the pool. 

After surgery, you may experience some physical and emotional changes that can have a direct impact on your sexual functioning and body image. Men may experience erectile dysfunction and women may notice pain during intercourse. These conditions are usually only temporary. Talking to your partner is key to strengthen your intimate relationship and communicate your needs. You and your partner may need to make some adjustments to accommodate the presence of a pouch, but your partner will take the cue from you. You may consider securing your pouch with an ostomy wrap.  Always share your physical limitations, pain (if present), fears, and what you enjoy and do not enjoy. To have a positive relationship with any partner, it is critical to accept your body –that is the key towards others accepting it as well. Having an ostomy does not mean you need to ignore your sexuality. For more information about sex, intimacy, and IBD, check out our fact sheet. For more information on intimacy with an ostomy, visit www.ostomy.org/sexuality

It is important to talk to your doctor before trying to become pregnant. Although your underlying surgery may affect fertility and ability to get pregnant, the presence of a stoma does not and should not deter one from getting pregnant. Every IBD patient is different; however, it is safe to get pregnant with an ostomy and generally ostomy patients do well with pregnancy if there are no other health issues.

During pregnancy, your stoma size may increase but it will return to normal after delivery. You may need to use different products or adjust the size of your flange when you change your appliance. Your stoma may also fall out of view as your pregnant stomach grows, so using a mirror or having a partner help you change the appliance is recommended.

Your care team may recommend that you have a surgeon on-call during delivery; however the presence of a stoma does not prevent vaginal delivery. 

You may be wondering how adjusting to life with an ostomy will affect you at work. Generally, once you have recovered from your surgery, you should not have any limitations doing your job. It’s best to talk about your return to work with your healthcare provider as this will depend on your comfort level, work environment, and how physical your job is. 

Here are some tips for managing your ostomy at work: 

• It’s up to you if you want to tell your employer or co-workers about your ostomy. However, if you require certain accommodations, such as access to a different bathroom or frequent breaks, you may need to have a conversation with human resources.  
• Have a change of clothes and extra supplies available to you at work in the event of a leak.  
• See if you can return to work gradually. Recovery after surgery is different for each patient, and you may have to ease back into a full day of work.

As a parent, you may have a lot of questions and concerns about how to support your child as they get used to life with an ostomy. Learning as much you can about your child’s ostomy is the best way to support them during this life change. Ostomy surgery can be difficult for your child and family members to adjust to.

Here are some ways you can show your support as a caregiver:

• Be open: Your child may not want to discuss their ostomy with everyone around them, and that’s okay. However, it’s important to guide open conversations around them about their ostomy to encourage them to feel comfortable asking questions or raising concerns when needed.  
• Be understanding: Children who undergo ostomy surgery may have additional physical needs temporarily, such as pain control and adjusting to a stoma, and it important to listen to how they are feeling. The calmer and more accepting you are about the stoma, the easier it will be for your child to accept it.  
• For very young patients: Very young children may accept their ostomy faster than parents or people around them. Young children are quick to adapt and may feel that their ostomy is just a natural part of them.  
• For teenagers: Adolescence can already be a difficult time due to puberty and body image issues, and an ostomy can cause additional stress for teens. It’s important to check in with your teen regularly to see how they are adjusting and discuss mental health concerns with your teen’s healthcare team. Click here for more information about mental health and teens with IBD.

Children and teens with ostomies may need certain accommodations at school, like having the ability to store extra supplies, access to a specific bathroom, or extra time to change their appliance during school hours. For more information about planning with your child, see Taking IBD to School.

As a college student with an ostomy, you may have questions about how to handle class schedules, activities, living on campus, and more. It’s important to schedule a meeting with your school’s health center before arriving or returning to campus to make sure they are aware of your ostomy and your needs. You don’t need to tell everyone about your ostomy, but it may be helpful to tell certain teachers or housing directors as you may be able to receive certain accommodations and get the support you need. Click here for more information about support services and accommodations at school.