What is an ileostomy?
An ileostomy (referred to as stoma) is a piece of small intestine that is brought through the skin to provide the body with an alternative way to eliminate the waste of digestion. Patients with medical conditions such as inflammatory bowel disease, colorectal cancer, or emergency bowel surgery can require ileostomy as part of their treatment. Its main purpose is to divert the fecal stream to allow the small intestine or colon to heal. For some patients an ileostomy is a permanent treatment, but for most it is temporary and typically gets reversed 3 to 6 months later. There are 2 types of ileostomy: end ileostomy [Figure 1A, B] and loop ileostomy [Figure 2A, B].
With an ileostomy, the byproducts of digestion do not get to the colon where the water typically gets absorbed. The output from an ileostomy is more liquid in nature. Ensuring a proper fit of the appliance to collect the waste and managing the output are the 2 most important aspects of your care. Failure to properly care for your stoma on a daily basis can cause dehydration and skin irritation issues which can lead to hospitalization. While an ileostomy is a life changing event, the majority of patients learn how to effectively manage their stoma and after a period of psychological and physical adaptation they can lead successful and productive lives.
You will be to resume physical activity gradually after surgery [see section on Post Abdominal Surgery Care for general information]. However, long-term you need to avoid very heavy lifting and contact sports, such as football, wrestling, and martial arts. It is important to secure your pouch well to the skin and wear a pouch belt. For sports like running or jumping, consider wearing a close-fitting underpants or sport brief that can keep your pouch snug against your skin. If you are concerned about excessive sweating or getting the pouch wet, you can use a waterproof tape along the edges of the pouch.
Wearing a pouch
Dr. Maher Abbas and his team will discuss with you the general care of an ileostomy. You will get daily teaching by the nursing staff while you are hospitalized. After discharge you will return to the clinic and seek the assistance of an enterostomal nurse (specializing in ileostomy care). The first step is choosing the best area to bring the ileostomy. This allows you to properly care for it and be able to wear your clothes comfortably. For most patients, an ileostomy is placed in the right lower aspect of the abdomen but in some cases other areas are chosen. The pouch you wear on the skin can be 1 piece or 2 pieces [Figure 3 and Figure 4]. The pouch needs to stick to your skin well and the opening needs to match the size of the stoma. Cutting too wide of an opening can lead to significant amount of skin irritation and if made too small it can rub against the stoma and make it bleed. As the swelling from surgery resolves, you will need to adjust the size of the pouch opening. Ideally each appliance pouch should remain on the skin for 3 to 5 days. It is important to keep the skin dry and avoid leakage of fluid on the skin as the digestive enzymes can be very irritating. The use of an adhesive skin barrier can be helpful. Clean the skin carefully every time you change the pouch. If you are hairy, keep the area as hair free as possible using an electric razor or a round ended scissors. Opaque pouches and fabric pouch covers keep the waste from being visible. The use of a fabric pouch cover makes wearing the pouch more comfortable by reducing heat build-up between the plastic pouch and your skin.
Showering and bathing
You are encouraged to bathe or shower with your pouch on or you can take it off and run water on the stoma. While your pouch is off, the stoma may continue to function. To avoid the situation, take a shower first thing in the morning before eating or drinking. When you wash around the stoma, be gentle. Use a clean, soft cloth and a small amount of non-oily soap. Don’t be afraid to gently run water on the ileostomy as it does not harm it. Water will not get inside your abdomen. Do not be concerned if you see a little blood. Some bleeding is normal because the stoma has such a rich blood supply. Rinse and dry the skin well. You can use a hair dryer set on COOL to dry it.
What to Eat
You should try to eat 4 to 6 smaller meals per day and drink plenty of fluids throughout the day. Eating large meals or drinking large amounts of liquids may not give adequate time to your small intestine to absorb the nutrients and the fluids. It may cause bloating and cramps. To avoid food blockage, adhere to the below list of foods. Chew food very well. Avoid large amounts of popcorn, nuts, very fibrous fruits, dried fruits, mushrooms, bean sprouts, and large pieces of poorly chewed fish, meat, and/or bread. For the first 4 to 6 weeks, a low fiber diet is recommended to avoid blocking the stoma with vegetables of a high residue diet. Table 1 presents general recommendations for an ileostomy diet. Adherence to such diet the first 4 to 6 weeks can be helpful. If you develop a food blockage, often it will resolve on its own but occasionally you may need to have the stoma irrigated. Getting into a knee-chest position by lying on your back and pulling your knees up to your chest, or by leaning far forward while you are in a sitting position can help. Warm compresses or a heating pad on your abdomen may help. Do not eat or drink anything for 3 to 4 hours. If the problem does not resolve, call Dr. Maher Abbas’ office or go to the emergency room if you are in severe pain or after hours. Do not take laxatives. After 6 weeks, you can gradually start introducing items you avoided on the list. Start with small amount. The key is too chew well.
Emptying and Measuring the Output
Once a stoma matures and is well regulated, it requires emptying 3 to 6 times per day, about the number of times you urinate. Usually when the bag is one-third full. After you measure the output, empty the contents in a toilet bowl. If you are concerned about liquid splashing inside the bowl, you can float a few sheets of toilet paper before you empty the pouch or flush the toilet while you are draining the pouch. In the early recovery period, you will experience a green thin liquid output which will gradually change to a greenish brown of more formed consistency once you are on a solid diet. The color of the stool will vary based on the color of what you eat.
Great attention is needed to prevent dehydration from high output. Normal daily output from stoma is between 500 and 1200 ml. Output more than 1200 ml a day can lead to severe dehydration and imbalance of minerals (salt and potassium) in the body. Dehydration, if not corrected immediately, can cause serious problems like kidney failure, abnormal heart rhythms, and even death. The best way to prevent and avoid dehydration is to keep a daily record of your ileostomy output and to drink 8 to 12 glasses (8 ounces/glass) of fluids per day. Drinking mineral containing juices like PowerAde or Gatorade can help replenish the water, salts, and potassium lost in the stool.
How do you measure ileostomy output?
- Empty the contents of your pouch in a measuring container
- Keep a record of the amount every time you empty your pouch
- Add the total amount each day
Maintain a daily diary the first month to monitor your ileostomy output, the amount you are eating, the amount of urine you are producing, and any medication you are taking to manage the output from the ileostomy (a diary form is provided at the bottom of this section)
- Normal daily output is between 500 and 1200 ml
What do you do if your output is greater than 1200 ml?
Avoid fibrous foods like raw fruit, broccoli, and green beans as well as beer, milk, and some spices. Eat mashed and ripe bananas, boiled white rice, baked potato without skin, applesauce and increase water intake. If persistent high output, then try to thicken the output by:
- Taking 1 tablespoon of psyllium fiber powder dissolved in 1 cup of water or juice once or twice a day
- If persistent high output, take Imodium (anti-diarrheal medication). Purchase at the pharmacy. Imodium slows the transit time of stool in the intestine
- Start with 1 capsule (2 mg) once or twice a day, 30 minutes prior to eating
- You may gradually increase the dose to 2 capsules, 30 minutes before each meal (breakfast, lunch, and dinner) and at bedtime
- Maximum dose you can take is 8 pills a day
- If you start experiencing abdominal cramping and minimal output from stoma or very hard stool, stop the Imodium
What do you do if your output continues to be over 1200 ml, even after trying Imodium?
If the output is consistently over 1200 ml for 3 days or more, you risk getting dehydrated. It is important to recognize signs and symptoms of dehydration. Signs and symptoms of dehydration are:
Dark colored urine
Shortness of breath
Decreased/cold sensation in arms and/or legs
Loss of appetite
Feeling of faintness
Back pain or flank pain
If you experience dehydration symptoms and if your output continues to be more than 1200 ml per day even after trying the above recommendations, call Dr. Maher Abbas’ office for instructions. If you feel very weak and/or after hours, go to the nearest emergency room for blood work and rehydration.
Managing Gas and Odor
During your early recovery, you may notice excessive gas from the stoma. This is normal and it will improve as the stoma self regulates. Offensive odor does not have to be a worry. Most current pouches are made of materials that confine odor to the inside of the pouch and some have charcoal filters. The only time you should notice any odor is when you change or empty the pouch. The odor of small intestine contents is not the same as that of normal stool because the bacteria that cause final food breakdown are mostly in the colon. Attention to what you eat can be helpful [see section on Gas Reduction]. Avoiding large amount of eggs, cabbage, onions, fish, baked or dried beans, asparagus, melons, very fatty food, carbonated drinks, milk, cheese, and alcohol can minimize the amount of gas and odor. Deodorants placed inside the pouch and some commercially available tablets can help with odor (charcoal tablets, chlorophyll tablets, bismuth subgallate, and bismuth subcarbonate). Vanilla or mouthwash in the pouch works well. Food that minimize odor include parsley, spearmint, yogurt, and buttermilk. To minimize excessive gas, stir some of the carbonation out of the problem beverages, avoid chewing gum, and don’t gulp down food too fast.
Sexual Activity and Adjusting to Your Ileostomy
Living with an ileostomy takes some psychological and physical adjustment. Brief transient depression can be a normal part of the process. Give yourself time. It takes about 3 months to recover physically from major surgery. Joining a support group either in person or online can be very helpful. A list of online resources is listed at the end of this handout. Talk to your enterostomal nurse, your spouse, close relative, or a trusted friend. It is important to reach out to people and not walk this journey alone.
When you are physically recovered from the surgery, you can gradually resume sexual activity in a non-pressured fashion. Empty the pouch beforehand. You and your partner may need to make some minor adjustments in positioning to avoid too much friction on your pouch. Contact during lovemaking cannot hurt your stoma. Wear a smaller pouch and cover with pleasing fabric or a sexy undergarment. Remember that the stoma only covers a small area of your body. If you are in a new relationship, build the relationship before you discuss your ileostomy and sexual activity. Gradually establishing trust and emotional connection is key. An ileostomy should not prevent you from being intimate. It is important to note that some patients can experience sexual dysfunction after pelvic surgery especially if they have received radiation therapy. If you are experiencing any problems with erectile dysfunction, lack of libido, or vaginal pain/dryness, discuss with Dr. Maher Abbas. A referral to a urologist or gynecologist may prove very helpful.
If you take enteric-coated pills and time-released medications, tell Dr. Maher Abbas for guidance. Such medications have coatings that may not dissolve properly and may pass unabsorbed into the pouch. Liquid medications or soft pills are preferable if available. Avoid ingesting multiple large pills or capsules at once as they can cause stoma blockage especially early during your recovery when the stoma is still swollen. Do not take laxatives as it may dehydrate you. If you take diuretics medications (water pills commonly used to control blood pressure or swelling), inform Dr. Maher Abbas. Diuretics can dehydrate you and cause mineral and electrolytes disturbances.
Signs to watch for
Watch for the following signs during your early recovery and contact Dr. Maher Abbas’ office or go to the Emergency room if symptoms are very severe:
- Abdominal cramps and distention
- Any of the previously stated symptoms of dehydration
- Continuous bleeding from the stoma
- Fever (Temperature >38 ° Celsius, >100.4 ° Fahrenheit)
- No output from the stoma for 4 to 6 hours
- Separation and retraction of the stoma from surrounding skin
- Stoma turns purple or black
- Vomiting, inability to tolerate food or liquids
You will be scheduled for weekly follow-up visits for the first month. Blood tests are ordered to ensure you are not getting dehydrated. In some cases, you will be seen more frequently. It is imperative that you show up to all your scheduled appointments to ensure proper stoma care. If you have any concerns or new findings, you can return to the office at any time.
Further Useful Resources
For Stoma Organizations:
Any questions? Contact Dr. Maher A. Abbas’ office nurse here!
Table 1 – Ileostomy Diet
Healthy Foods to Eat
Eat Less Often
Bread, Cereal, Rice, Pasta
Breads – refined white, wheat, seedless rye
English muffin, bagels, biscuit
Pancakes, waffles, plain pastries
Cooked cereals such as Cream of Wheat or Rice, farina, grits
Cold Cereal – puffed or flaked
White rice, pasta (noodles, spaghetti)
Whole –grain or whole-wheat breads or cereals
Oatmeal, oat bran
Cereals or breads with bran, nuts, seeds
Healthy Foods to Eat
Eat Less Often
Canned or cooked fruits without seeds, applesauce
Ripe bananas, melons
Strained fruit juice (no pulp)
Well-cooked and canned vegetables without seeds
Lettuce and salad greens, if tolerated
Potatoes and sweet potatoes without skin
Avoid all berries and dried fruits
Avoid prune juice
Fresh fruit with peel, seeds, or membrane
Vegetables with strings and seeds
Peas, corn, mixed vegetables
Most raw vegetables
Milk, Yogurt, Cheese
Yogurt (without seeds)
Cheese or cottage cheese
Yogurt with berry seeds or granola
Specialty cheeses with added nuts, dried fruits, or seeds
Meat, Poultry, Fish, Eggs, Dry Beans, Nuts
Tender lean meats, organ meats
Smooth nut butters
Eggs, egg substitutes
Sausages or lunch meats with seeds or whole spices
Nuts, chunky nut butters
Dried beans, peas, and lentils
Oil, trans-free margarine, butter, cream cheese
Cream or cream substitute
Salad dressing without seeds or whole spices
Coconut, nuts, seeds
Sugars & Sweets
Clear jelly, honey, sugar, brown sugar, syrup, molasses
Hard candy, plain chocolate, marshmallows, gelatin
Ice cream, sherbet, and sorbets without seeds or nuts
Cakes, cookies, and pies without nuts or seeds
Jams, preserves, marmalade
Any dessert or candy made with whole-wheat flour, nuts, seeds, coconut, or dried fruits
Cream soups without allowed vegetables
Bean, pea, or lentil soups
Vegetable or minestrone soup
Seasoning & Sauces
Salt, finely group spices and herbs
Vinegar, ketchup, mustard
Whole-seed spices such as celery, mustard, or cumin seeds
Ileostomy Daily Diary
[Record in milliliters per 24-hour period]
Medications for Stoma
Download printable version here.