Discharge Information for ileostomy Patients

What is an ileostomy?

A stoma is a surgically created opening of the bowel onto the abdomen (tummy). An ileostomy is a stoma created on the small bowel (or ileum). The surgeon makes a small incision, usually on the right side of the abdomen, and brings an area of bowel to the skin surface. The stool is therefore diverted into a pouch that sticks onto the abdomen, which your stoma nurses will have taught you to change. The ileostomy is naturally bright red in colour and will be swollen at first, taking a few weeks to shrink to its permanent size. Ileostomy’s can be temporary or permanent depending on the type of surgery you have had.

It can be daunting at first to adjust to life with ileostomy, but given time and some support from those close to you and the stoma nurses, you will grow in confidence and be able to return to all aspects of your life that you enjoyed before your operation.

Care of your ileostomy

During your stay in hospital, the stoma nurse will have taught you how to look after your stoma.

The pouch on your abdomen will need to be changed once a day or if you prefer, every other day. Some people prefer to shower with the pouch off, but it is water proof so you could chose to shower with it on. It is best not to use soap or perfumed wipes as this may irritate the surrounding skin. The pouch will need to be drained when it becomes half full to prevent it leakage, this is usually between 4-6 times in 24 hours. Always drain your pouch last thing before going to bed and first thing in the morning.

Disposal

Once you have changed your pouch, you can dispose of it in the rubbish bags provided and this can then go into you every day waste.

Supplies

You will be provided with stoma supplies to take home by your stoma nurse. There is sometimes a period of experimentation and adjustment at this stage before a decision is made regarding which pouch you will use going forward. When it has been decided, the stoma nurse will inform your GP of the prescription details. The pouches can then be delivered by a medical delivery company (details over leaf) or from the chemist. If you choose a medical delivery company the first order will arrive usually within 2 days of your Stoma Nurse registering you and placing the first order. Thereafter, when you need more stoma equipment, you can reorder yourself directly with the delivery company, either by phone or via their website. Please remember to give 2 weeks’ notice, which allows time for the delivery company to obtain a prescription from your GP (they can normally 

request this for you). The delivery company offer a cutting service, so when your stoma has healed and no longer changing in size, your stoma nurse will let them know the measurements and the pouches will be delivered to you pre-cut. They will also be able to provide dry wipes and rubbish bags and are a great source of advice and information.

If you have chosen to have your supplies delivered to you at home, your delivery company is:

Coloplast Charter. Telephone

England & Wales: 0800 132 787
Scotland: 0800 917 8639
Northern Ireland: 0800 581 220

Diet  

You may find that your appetite is poor following your surgery, this is normal and it will return over time. The best way to eat is little and often. Try not to leave long gaps between eating as this will give you more wind and a more watery stool.

Always chew your food well and try not to drink too much during your meal as this tends to rush your food through your gut, preventing valuable absorption of vitamins and minerals.

A low fibre diet (certainly for the first few weeks post-operatively) is advisable for 2 reasons:

1. Your gut will be swollen following your surgery; therefore large pieces of undigested fibre may cause a blockage. This can be painful and can sometimes result in readmission to hospital while the blockage passes.
2. Fibre tends to cause a looser output and more wind.

We therefore advise avoiding fruit and most vegetables (with the exception of well-cooked root vegetables) for the first couple of weeks post-operatively until your stoma output has settled down. Ideally the output will be the consistency of thick porridge and emptying the pouch 4-6 times a day. When this is well established and you are confident with a ‘normal’ output, you can gradually start reintroducing fibre into your diet, but always sticking to the principle that fruit must be peeled and vegetables must be cooked to avoid eating large amounts of insoluble fibre.

Insoluble fibre is found in the skins of fruit and vegetables and the leafy green family (such as cabbage and lettuce). For this reason, it is best to peel and cook vegetables well after your surgery and avoid leafy green vegetables for the first few weeks. Root vegetables (or vegetables that grow under the ground) are a safer option but make sure they are peeled and cooked well. Root vegetables include potatoes, carrots, swede, parsnips and sweet potatoes.

Try and eat a portion of protein at each meal as this will help your healing. Protein is found in meat, fish, eggs, dairy and pulses (but remember pulses are high in fibre too).

You should also have a portion of carbohydrate. This will provide energy and help to thicken your stool which will help you stay hydrated (see hydration section). Carbohydrates are found in potatoes, pasta, rice and bread. 

If you are worried about trying a new food, it is always best to try a small portion at lunchtime and see how you go. If it has undesired effects, it doesn’t mean you can never eat that particular food, try it again 1-2 weeks later.

Remember, you will need extra calories for healing in the early days so try and snack in between your meals while you are recovering. Good snacks include: crisps, cheese and biscuits, pretzels, cheese crackers and sweets containing gelatine such as jelly, marshmallows and jelly babies as these will also help to slow and thicken the output.

It is also advisable to add a small amount of table salt to your food, as you will be losing more salt than usual in the ileostomy output (if you are known to have high blood pressure, please discuss this with your Stoma Nurse).

After a few weeks (around 4-6) you can begin to add more food to your diet, your stoma nurse can advise you.

Good meal options for the early days could include lasagne , spaghetti bolognaise, fish pie (without shell fish) macaroni cheese, white or seed 

free brown bread sandwiches with a protein filling such as chicken, cheese, tuna. Eggs in any form are fantastic as are quite binding and a great source of protein and nutrition.

There are lots of options and you will be given written dietary advice when you leave hospital.

Drinks

After bowel surgery, especially removal of the large bowel, the body’s ability to absorb water may be compromised, therefore it is important to pay attention to your needs. A good way to keep yourself hydrated is to drink a variety of fluids, not just water as excessive water can flush electrolytes such as salt and potassium from your body leaving you more dehydrated. Aiming for 6-8 glasses a day (1.5-2 litres). Drinks could include milky drinks, tea and coffee, juices and squashes, sports drinks are ok too but remember these are very high in sugar so shouldn’t be used too often. Remember that tea and coffee contain caffeine which irritates the bowel, so be sensible with the amount you drink. 

Hydration

The ideal consistency of your output is like porridge or toothpaste. Draining your pouch between 4-6 times per day when it is around half full is considered normal (around 600-800mls per day). You should be squeezing your pouch to empty it, not pouring.  It is normal to have a looser stool before your breakfast but it should then thicken throughout the day as you begin to eat.

If you are emptying your pouch frequently (more than 1-1.5 litres a day depending on your size) and the consistency is like water, you are at risk of dehydration and acute kidney injury. This may be caused by:

• Infection
• Obstruction
• Quickly stopping some medications such as steroids or strong pain killers
• Taking some medications such as potassium or magnesium supplements

It is important to recognise symptoms of dehydration early and seek advice to prevent further deterioration. You may feel:

• dizzy or light headed/faint
• dry mouth/thirsty
• headache
• urine reduced in volume and more concentrated/dark in colour
• muscle cramps and pins and needles

Recommended actions:

• Reduce intake of water/tea/coffee to 500-1000mls in 24 hours
• Sip 1000mls of rehydration fluids in 24 hours (see below)
• Avoid drinking large volumes 30 minutes before and after your meals
• Eat a high carbohydrate, low fibre diet
• Take 2-4mg (or your prescribed dose) loperamide 4x a day (30-60 mins before each meal and at bedtime) Please check contraindications before starting a new medication and seek medical advice if required
• Empty and change your pouch regularly to prevent leakage by overfilling

Rehydration drink recipes:

Recipe 1 St Mark’s solution	Recipe 2	Recipe 3
20g or 6 teaspoons glucose powder 2.5g or ½ teaspoon of sodium bicarbonate (baking powder) 3.5g or 1 level teaspoon of table salt In 1 litre water (add fruit squash to taste)	800 mls tap water 200mls squash (not sugar free) 1 teaspoon salt	2 sachets dioralyte in 200-300 mls water **NB contains potassium so must be used with caution especially with any heart probems, please discuss with stoma nurse or GP**

Exercise

Exercise is wonderful for our mental and physical health. Following your surgery, it is important to avoid strenuous activities for around 6 weeks while your abdomen is healing. Activities such as hoovering, mowing the lawn, and lifting heavy objects will put too much strain on your abdominal muscles and should be avoided for 6 weeks. Walking and swimming are great to begin with; you can then build up to more strenuous activities in the following weeks. A strong ‘core’ or abdominal muscles will help prevent you developing a hernia (a bulge of bowel behind the weakened abdominal muscles). You will have discussed hernias before or during your hospital stay with your Stoma Nurse. With this in mind, the Stoma Department at Chelsea and Westminster have developed a 3 week rolling Well Being Class, which is offered to our stoma patients. The class incorporates specially adapted core exercises that are safe to carry out 6 weeks post abdominal surgery, with the long term aim of building a strong core and help prevent hernias. We also talk about healthy eating, hydration and other relevant topics. It is a great opportunity to meet other people who have had similar surgery and share stories and tips.

Body image and intimacy

People with stomas have full sex lives in the same way as those without stomas, however, it can take some time to accept and come to terms with the new changes to your body. It is natural and normal to feel anxious about returning to a relationship or finding a new partner. If you are in a long standing relationship, it is good to share worries by talking to your loved ones about body image and return to a sex life. If you want to find a new partner, it is important to give yourself time to regain confidence.

The stoma nurses are used to discussing these issues and are there to offer support and guidance to support that is available. 

Potential problems

Here are a few potential problems you may experience which you will need to call your Stoma care Nurse for advice about.

• Hernia 

This is when the bowel bulges through the abdominal wall behind or around the stoma. Avoiding strenuous activities in the early weeks will help prevent hernias. Maintaining a healthy weight and not smoking will also help minimise your risk.

• Prolapse

This is when the bowel protrudes out of the stoma opening. This can look alarming but is not a medical emergency. Please contact your Stoma Nurse for advice.

• Sore skin

For good pouch adherence, healthy skin next to your stoma is essential. It is important that the template of your pouch is accurate. If your skin comes into contact with the output it can cause sore skin very quickly. Your stoma team will teach you how to monitor your template and check your skin.

• Constipation

You can still become constipated with a stoma so, as mentioned earlier, maintaining a healthy diet is important. Your GP or stoma nurse can prescribe a laxative if this is an ongoing problem.

• Diarrhoea

This can happen for a number of reasons. There is a list of foods to help thicken your stool in your dietary booklet. Keep yourself hydrated and contact your GP if it persists.

Follow up

If you live within our catchment area, we will phone you the day after your discharge to arrange your first visit with us. This will either be in our clinic if you feel strong enough to come in, or at home. You will be followed up once a week for the first six weeks and then at 3, 6 and 12 month intervals or more if you require it.

Otherwise, we will refer you to your local Stoma Care Nurse and you will be followed up a according to their protocol.

Further support and information

The Ileostomy Association

Email: info@iasupport.org

Freephone: 0800 0184 724

Website: www.iasupport.org