Frequently Asked Questions
Q. How often will I need to go to the toilet?
A. While every case is different, according to St. Marks Hospital the average is 4-5 times a day with one of those possibly at night (somewhere between 20-40% need to get up in the night). St.Marks also say 75% of all pouchies go between 2-6 times a day. This is of course once the pouch has settled down – in the early days frequency will probably be higher and there may be some urgency. You will also find certain foods will make you need to empty more frequently whilst others will have the opposite effect and your likeness for any of these can also have a bearing in your output.
A. When you empty your pouch, sit up straight with your shoulders back, and knees and feet together – good posture is important. Don’t tense, keep relaxed and try not to strain. You should use your oblique muscles (these are the muscles at the side of your abdomen below the ribs, either side of where your six pack would be) to empty your pouch – it can be easier to use these if, keeping your feet together, you lift them off the floor a little – maybe try resting them on a thick book, such as the telephone directory or yellow pages. If your pouch does not feel as if it has been properly emptied, it might help for you to stand up for half a minute or so and try again. Massaging your stomach downwards can also help.
Q. I’ve heard about ‘butt burn’, what is it and what can I do to prevent or reduce it?
A. ‘Butt burn’ is soreness around the entrance to the back passage and is usually caused by the corrosive effect of active digestive enzymes in the stool. Previously these enzymes were neutralized in the colon, but now the colon has gone these can be still active and cause soreness and irritation in the perianal area. This is most common when people need to evacuate more often, and certain foods can make it worse. Taking the following steps can help to make things easier:
- Keep the area clean by washing and drying after every bowel motion
- Avoid rubbing with soap or a rough flannel
- Moist toilet paper is available (from chemists) for a softer touch
- Avoid excessive moisture
- Avoid perfumed talcum powder
- Wear cotton underwear
- Avoid excessive use of ointments and creams
- Consider thickening your bowel motions by changing your diet or taking medications
- Seek medical help should the problem persist
Q. What are psyllium husks?
A. Psyllium seed husks, also known as ispaghula or simply as psyllium, are portions of the seeds of the plant plantago psyllium or plantago ovata and contain a fibre called mucilage. Mucilage absorbs a great deal of fluid in the gut, the fibre swells and adds bulk to the stool. The bulk can help cut down the number of times that a pouchie needs to visit the toilet. Some internal pouch patients have found them as a natural alternative to drugs like loperamide and codeine phosphate, although others have found them ineffective. Psyllium also removes the sticky mucus and toxins from the bowel. It can help reduce acidity and increase urine flow. It is very important to drink at least eight full glasses of water a day, or the digestive track could become blocked. Psyllium is available from health food shops such as Holland and Barrett and is relatively inexpensive. Please read the label carefully before use.
Q. Even though my pouch is not yet connected I’m leaking mucus during the night – does this mean I’ll be incontinent when my pouch is connected?
A. This is not uncommon – the bowel produces mucus to lubricate and ease the passage of stool. As there is a lot of manipulation of the anal canal during surgery it is not unusual to have a period of reduced rectal control and such leakage is often simply a symptom of this and normally rectifies itself before the takedown surgery.
Q. Since my pouch was activated I suffer with wind and bloatedness, what can I do to reduce this?
A. There are a number of things you can do to help minimize wind:
- Chew food well, especially fibrous foods
- Eat slowly,trying not gulp and swallow excess air
- Try not to talk when eating
- Eat regularly and don’t skip meals
- Avoid fizzy drinks, or allow them to stand for 10 minutes before drinking
- Get to know the foods that cause excess wind
Remedies including peppermint capsules and oil, and other indigestion preparations can help. Fennel and mint tea can be useful in reducing wind and live yoghurt may also ease the problem but needs to be taken in large quantities to be effective. It might be worth avoiding beans, beer, fizzy soft drinks, leafy green vegetables, and onions as these are known to cause an increase in wind production.
Q. Will I need to take any medicines?
A. Possibly – 20-40% of pouchies take some form of anti-diarrhoea medicine, e.g. loperamide, codeine phosphate, or similar, however most pouchies do not need these and others with higher frequency choose to make adjustments to their diet.
Q. The output of my internal pouch is a strange colour. Should I be worried?
A. Patients have contacted IA in the past, concerned that the output from their internal pouch is a strange colour. If the output was very red in colour, they were concerned that they might be bleeding internally. It turned out that they had been eating beetroot a little while before. It’s wise to remember that with the pouch, the time period of waste passage is much less than it used to be with the colon, and certain foods with strong colours can sometimes pass through the same colour as they went in. It is very rare to have substantial internal bleeding, although it is fairly normal to pass a small amount of blood occasionally. This will usually appear in the form of streaks on the toilet paper. Before panicking, remember what you ate earlier. If you are still concerned, you need to see your doctor or stoma care nurse.
Q. Will I need to change my diet?
A. Some dietary adjustment may be necessary, at least in the early stages. You will likely find some foods quicken the passage of waste through the system and you may wish to cut down on these foods. Others will thicken the stool and slow down transit times and you may want to eat more of these. It should be remembered though, that as your internal pouch settles down, you will probably find you will be able to tolerate foods that have given you problems in the past. So remember, after avoiding a food for a while, try it once again (especially if it is one you enjoy).
Q. I have to go for a pouchogram, what is that and does it hurt?
A. A pouchogram, often called a gastrograffin or contrast enema, is an examination of the pouch that normally precedes takedown. Its purpose is to check the integrity of the pouch and ensure there are no leaks before the pouch is put into service. The examination itself is quite straightforward and quite painless though you may experience some minor discomfort. A small catheter is inserted into your back passage and the contrast material is then passed through this into the pouch. You will probably be asked to change position a number of times to allow the contrast material to work its way throughout the entire volume of the pouch. The radiologist will examine the pouch from a number of different angles to ensure there are no leaks or other problems such as strictures. Afterwards you will probably want to go the toilet to expel the material that has been put into the pouch. A good deal of this material may well have found its way into your stoma bag and you may need to empty this too. It is wise to take a bag change with you, as the liquid nature of the enema can compromise the adhesive material.
Q. I have had the first stage of my internal pouch surgery and even though I have an ileostomy I have to go to the toilet many times a day to pass mucus, is this normal?
A. This one of the most commonly asked questions. The bowel naturally produces secretions to aid the passage of stool and these are normally passed along with a normal motion. Even though stool is not passing through the defunctioned part of the bowel, these secretions are still being produced and as a result you will get the urge to go to the toilet to get rid of this. Normally before surgery you will be told to expect to occasionally pass a small amount of mucus, some of us pass lots of this quite regularly. Providing all you are passing is mucus, it is nothing to worry about.
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