Ileo Anal Pouch FAQS

(For Koch Pouch Frequently Asked Questions (FAQs) please click here.)

To download an ebook of The Ileoanal Pouch, A Troubleshooting Guide please click here.

What does an Ileo-Anal Pouch operation involve?

The pouch operation called “restorative proctocolectomy” or “Ileo Pouch Anal Anastomosis” by the medics, essentially involves the removal of the colon and rectum and the replacement of the rectum with a reservoir (pouch) made out of small bowel. This is hand sewn or stapled on to the anal sphincter muscles that preserve continence. The operation can be carried out in 1, 2 or 3 stages. The 3-stage operation is most common.

What are the stages of a 3-stage pouch operation?

Most patients coming to pouch surgery will have had the colon removed as an emergency after a bad attack of colitis. The rectum will be left in place and the individual will have an ileostomy. This is the first part of a 3-stage operation.

When well, off steroids and in good nutritional state, the second part of the operation can be performed. This involves removing the rectum down to the pelvic floor, the creation of an ileal reservoir and an anastomosis (join) to the anal sphincter. Defunctioning the pouch with a loop ileostomy usually protects the anastomosis. The loop ileostomy is upstream of the pelvic surgery and creates a temporary diversion. A special x ray prior to the 3rd operation checks the anastomosis. This is called a pouchogram. The third part of the 3-stage operation involves a small operation to close the loop ileostomy and restores continuity of the bowel.

What are the stages of a 2-stage pouch operation?

A number of patients have the colon and rectum removed, the creation of a reservoir and ileo-anal anastomosis with a covering loop ileostomy, all in one operation. Later the ileostomy is closed in a second operation. A Stoma/Colorectal Nurse Specialist will give information about caring for an ileostomy. A booklet is also available.

Does anyone ever have a 1 stage pouch operation?

Occasionally, if all goes extremely well and there are no technical problems, it may be possible to carry out the procedure in one single operation. The colon and rectum are removed, the ileo-anal pouch constructed and joined to the anal canal. The patient does not have an ileostomy.

How is the pouch formed?

The pouch is made out of 2, 3, or 4 loops of small bowel (ileum) and these are then joined to the upper part of the anal canal. The 2 loop/ J pouch is the most common.

Ileo anal pouch

When I come round after the pouch forming operation what equipment will be in place?

So that the rectum can be removed the bladder is drained with a catheter to keep it empty during the operation, this will usually remain in place for 2-3 days afterwards. Often drains are inserted in the area where the rectum has been removed, to ensure any minor bleeding or seepage is removed. These drains are usually removed after 2-3 days. You may also have a drain placed into your pouch via your anal canal for 2-3 days to help drain any excess fluid your new pouch. A ward nurse irrigates this tube twice daily.

You will have an intra venous (IV) drip either in the arm or occasionally placed in a vein beneath the collarbone, this is to administer fluid. Sometimes the drip has to be kept for some time after the operation because the new ileostomy output can be very watery and you will require extra water and salt via the IV drip.

How long will need to stay in hospital?

After the main stage of the operation 7 days is the usual timescale. When you return to hospital (usually 3-6 months) and have the loop ileostomy closed this stay is shorter.

What is the post operative follow-up?

Usually you will be seen in out patients approximately 2 months after the operation, then 6 months later and then at 1 year. Thereafter you will usually be seen annually.. Often your pouch will be examined briefly with a short rigid scope. Every few years you will probably be asked to have a more detailed examination in the endoscopy unit with a flexible scope, where biopsies may be taken as well as some photographs.

How soon can I return to work?

This is a major operation so we do not advise returning to work too soon. Normally it would be sensible to stay away from work for a couple of months, some patients return to work prior to closure of the loop ileostomy. Others wait until the ileostomy is closed. After the closure operation, usually 2 weeks is sufficient.

What is the long-term outlook my pouch?

Some of the oldest pouches are now 30-35 years old and many still have an excellent functioning pouch. As yet, no particular nutritional or vitamin problems have been reported, but since this is a relatively new operation in surgical terms, it is important we keep you under long-term review to ensure all is well.

There is some concern that in old age when an individual’s sphincter or anal continence muscle possibly becomes weaker there may be problems with pouch function and continence. There is no definite evidence to suggest that this is the case so far, an increasing number of older patients have good pouch function. If you experience any problems with incontinence it is worth speaking to a Nurse Specialist as he/she will be able to discuss potential causes, advise you on some pelvic floor exercises to try and strengthen the muscles that control continence.

How often will I need to empty my pouch?

In the early days after your pouch formation and especially while in hospital, you will probably need to empty your pouch quite frequently. We suggest trying to “train” your pouch, we would advise that initially you empty your pouch hourly until you have full control and do not experience any urge to open your pouch within that hour. Once you have achieved this, extend the wait to two hours, and then three hours until you are just going when you feel the need, you should leave hospital going to the toilet 6-8 times in 24 hours. The reason for this is that we are trying to encourage your pouch to expand and contract something that your ileum is not used to doing.

It is important from the outset to try to relax when you go to empty your pouch, as this helps to ensure proper emptying. If you have tried to use the toilet and your pouch does not feel properly empty, try standing up, counting to 30, sitting down and trying again. Massaging your tummy in a downward movement has been helpful for some pouch owners.

While you are still in hospital, the medical and nursing staff will initially want to monitor your fluid intake and also your pouch activity. This is to ensure your fluid intake is enough to compensate for your output, as in the early days you are at risk of becoming dehydrated. The doctor may also prescribe Loperamide, a drug that will help thicken stool and reduce number of visits to the toilet.

It can take up to a year or even longer for pouch activity to settle down. Pouch function is very individual and extremely variable. For example, some people only empty their pouch once or twice during the day and never overnight, others need to empty more than six times during the day, once or twice at night. It also depends on variables such as the shape, size of your own pouch, what and when you last ate.

What will my stool consistency be like?

When you first start to empty your pouch, the output may be liquid and contain some mucus. In the first few days after surgery it may occasionally be slightly blood stained.

Over a period of time, which seems to vary from one person to another, the output should thicken up and become a more porridge like consistency. It may never become formed. Nearly all people with pouches say they pass loose stools. The consistency can also vary from one day to the next depending on diet. See table regarding possible effects of food and drink.

The doctor again, may prescribe Loperamide, a drug to thicken up the output if it remains very watery, although this anti diarrhoea medication is available over the counter. If your output is consistently liquid it may be necessary to take “Dioralyte” or some other oral rehydration salts to make sure you do not get dehydrated. Please see recipe for homemade fluid replacement solution. Your doctor or Nurse Specialist can advise you.

Will I experience leakage from my pouch?

You may well experience this initially, especially overnight whilst sleeping and relaxed. However, it may just be the occasional leak. 42% of people with pouches have experienced leakage, and the problem resolved over a period of time as muscle control improved. When you are getting used to the pouch, it is easy to confuse the feeling of wanting to pass wind with that of wanting to open your pouch. Beware, as this may be the cause of a leak! Ways to cope with leakage are: –

  • Emptying your pouch before going to bed
  • Avoiding alcohol, sedatives and food before going to bed
  • Avoid food that loosen your stool
  • Eating marshmallows or jelly babies – they help to thicken the stool
  • If you are prescribed Loperamide it may be advisable to take an extra one before going to bed. (maximum of 8x2mg tablets/24hrs)
  • Bottom clenching, bottom walking and pelvic floor exercises will help improve muscle tone and so help avoid leakage

What exercises should I do to help with pouch function?

Pelvic Floor Exercises for Men

  • The first step to an effective exercise programme is to correctly identify the pelvic floor muscles. As these muscles are inside the body and we are not normally aware of using them it is worth taking time to check that you are exercising them correctly.
  • Sitting or lying comfortably with knees slightly apart, concentrate on your pelvic floor muscles. Lift and squeeze at the front as if trying to stop the passage of urine, and at the back as if stopping the passage of wind.
  • Hold the contraction for as long as you can (at least 2 seconds increasing as you improve up to 10 seconds). Rest for an equal number of seconds.
  • Repeat the contraction and relaxation as many times as you can, this will be “your number”.
  • Also practise the same number (aiming for 10), of short fast, strong contractions.

You can feel the correct muscles by placing your fingertips against the skin just behind the scrotum. When the correct action is performed you will feel the muscles tighten and lift up away from your fingers. Your scrotum should lift slightly and the base of your penis should move towards your abdomen.

It may also help to find the correct muscle if you try to stop the flow of urine towards the end of the urine stream, then restart it. Only do this once to find the muscles, as this may interfere with normal bladder emptying.

Pelvic Floor Exercises for Women

The first step to an effective exercise programme is to correctly identify the pelvic floor muscles. As these muscles are inside the body and we are not normally aware of using them, it is worth taking time to check that you are exercising them correctly.

  • Sitting or lying comfortably with knees slightly apart, concentrate on your pelvic floor muscles. Lift and squeeze at the front as if trying to stop the passage of urine, and at the back as if stopping the passage of wind.
  • Hold the contraction for as long as you can (at least 2 seconds increasing as you improve up to 10 seconds). Rest for an equal number of seconds.
  • Repeat the contraction and relaxation as many times as you can, this will be “your number”.
  • Practise the same number (aiming for 10), of short fast, strong contractions.

You can feel the correct muscles by placing your index finger or thumb into the vagina

When the correct action is performed you should feel a lifting and squeezing action.

It may also help to find the correct muscle if you try to stop the flow of urine towards the end of the urine stream, then restart it. Only do this once to find the muscles, as this may interfere with normal bladder emptying.

The Lift

Imagine the pelvic floor is a lift, stopping at various levels in the store. Aim to contract the muscles gradually in five stages with a short stop at each, not letting go between levels. Then allow the pelvic floor to descend, releasing the contraction level by level. When you reach the starting point, (ground level), allow the muscles to relax completely so that you feel a slight bulging downwards. If you actually push downwards, as if sending the lift in to the basement, you can lower the pelvic floor even further.

What is a Pouch Catheter?

A few people with pouches (less than 10%) have difficulty in the emptying of their pouch and occasionally use a catheter. It would probably be a temporary measure until you become better at emptying your pouch yourself. You may be advised to use a catheter if you have any of the following signs that the pouch is not emptying properly.

  • Continual discomfort and colic pains.
  • Leakage at night (catheterising before bedtime can resolve this).
  • Pouchitis (inflammation of the pouch).
  • Feeling that you have not emptied your pouch completely.
  • A tightening of the anastomosis may need dilating by the surgeon with the use of a dilator.

The catheter used is the Astra Meditec Medena M8730-5. It is a narrow tube inserted just inside the anus, into the pouch, down which the pouch contents can empty more easily. Whilst not, perhaps, as desirable as always being able to empty the pouch spontaneously, the small number of people who use this method on a day to day basis report they still feel this is acceptable.

You may need to use the catheter in the morning and once in the evening, or occasionally all the time. However catheters should be used with caution and only after careful assessment by your surgeon and Clinical Nurse Specialist and expert teaching and guidance in the use of catheters.

Are there any rules regarding eating and drinking?

One of the benefits of a pouch is that you will be able to follow a regular diet. You may decide to alter your diet a little in order to aid in slowing bowel function or to prevent anal canal and perianal skin irritation. The table lists four groups of foods that commonly affect pouch output of the lower digestive tract. There are no specific rules to follow – diet is unique to each person, many people have not had to make any changes to their eating and drinking habits.

However, the following suggestions may be helpful:

  • Add new foods to your diet one at a time. In this way, you can identify problem foods quickly. Keep in mind those foods that cause problems at first may not continue to do so. You can try small amounts of problem foods again sometime in the future.
  • Eat small meals at first. It will make you feel more comfortable and less bloated.
  • Eat regularly – don’t skip meals. If you are having frequent bowel movements and think that eating fewer meals will help, remember that more gas may be produced when your bowel is empty so don’t avoid meals in an attempt to limit output. Also, eat foods that may decrease pouch output.
  • When you eat food high in fibre eg; salad, pulses, be sure to chew them well, limit the quantity and drink plenty of fluids. Try to drink after food is swallowed so that you are not washing down a mouth full of half chewed food.
  • If your pouch output becomes so thick that it is difficult to pass, you may be able to ease the problem by drinking more fluids – especially fruit juice. Also, eat foods which may increase pouch output. (See Table Below).

Which foods may effect Pouch and Bowel function?

May increase output

Beans & Legumes, Beer, Caffeinated beverages, Chocolate, Leafy green vegetables, Spicy foods, Wholemeal breads and cereals, Alcohol, Citrus fruits & juice

May decrease output

Apple sauce Bananas, Boiled rice, Cheese, Creamy peanut butter, Tapioca, White bread, Potatoes, Pasta

May cause anal irritation

Coconut Nuts, Oriental vegetables,  oranges, apples, coleslaw, celery, corn, Citrus fruits and juices, Food containing bran, Popcorn

May increase wind

Beer, Carbonated beverages, , Dried beans and peas, Onions, Vegetables in the cabbage family (cabbage, broccoli, sprouts),

Need to chew well, have on rare occasions been known to block the flow from the pouch

Mushroom, Sweetcorn Potato , Nuts, Tomato skins, Raw fruit skins, Pineapple

Should I drink more?

It is important to remember that you no longer have a colon, which makes you slightly more at risk of dehydration. The normal function for the colon is to reabsorb water and salts (sodium and potassium) back into the body. Therefore, it is important to ensure that you drink approximately 8-10 glasses of fluid more than previously. In hot weather you may need to drink slightly more, or if you have been active and sweating a lot.

There are some isotonic drinks available on the supermarket shelves, which are useful. E.g. Lucozade Sport, although commercial energy drinks are not suitable for use as rehydration fluid. Dioralyte sachets (available from most chemists) are fluid replacement salts, which can be taken when required. The Home Made Rehydration Drink (see recipe below) can also be made up daily and left in the fridge for you to drink at your leisure, although it is nicer to flavour with small quantities of squash or juice.

Rehydration Solution

You will need to make up the solution fresh each day.

Glucose – 6 x flat 5ml spoonfuls

Sodium Chloride (Table Salt) – 1 x flat 5ml spoonful

Sodium Bicarbonate (Bicarbonate of Soda) –  1 x 2.5ml heaped spoonful

MADE UP TO 1 LITRE WITH TAP WATER

You can buy the powders from any community pharmacy and some supermarkets.

They are cheaper to buy than to obtain on prescription if you pay the charges.

How do I deal with wind?

65% of the pouch owners who replied to one questionnaire reported that they had experienced discomfort with wind. For some, it is the embarrassment of loud gurgling noises that causes problems; for others it can be painful, causing bloating, discomfort and difficulty expelling it. However, there are ways of relieving wind.

The most popular way is to lie flat on your stomach, massaging your abdomen in downwards movements. Also, try sitting on the toilet, as soon as you experience the familiar gurgles and gently press on your lower abdomen, massaging downwards. It is often extremely difficult to expel wind standing up.

For some, an indigestion remedy such as Rennie or Asilone may help. Peppermint water or sucking a mint could also be tried. Remember, many people suffer the discomfort of flatus but often your attention is drawn to it after an operation.

Individuals who smoke or chew gum are more likely to experience wind.

Will I feel pain?

After the initial post operative pain has settled, 50% of people with pouches reported pain on some occasions from their pouch, although this does settle down with time. There are different types of pain which people have experienced, described as spasms, cramps, rumblings or colic. For some, it can get quite bad.

Those who have had trouble with pain have found the following of some use: –

  • Trying to empty the pouch as soon as the cramps begin.
  • Trying to relax. Playing some soothing music and concentrating on breathing slowly and deeply.
  • Lying down and gently massaging your stomach.
  • Using a hot water bottle.
  • Having a hot bath.
  • Taking pain relievers

Most pains will get better so do not despair. Always report pain to your doctor.

How do I deal with anal soreness (burn) ?

Anal soreness and itching are quite common, and can occur even if you are meticulously clean around the area. Having regular baths or using a bidet and patting the area dry afterwards are important. If the skin is not broken, wipe around the anus with a skin protection wipe e.g. Skin safe (6600) or LBF (3820) that helps to form a “second skin” around the area. Available on prescription.

It is strongly advised to use a barrier cream from “day one” as it is easier to prevent soreness than to cure it. Apply the cream sparingly (pip size) after every time you have emptied the pouch. Too much cream will create a greasy stain on your trousers/skirt and can lead to soreness.

There are several barrier creams that are very effective in preventing and relieving soreness; here are a few:

You will need a prescription from your GP for these items:

  • Comfeel*- 4720 Coloplast
  • Comfeel Barrier Wipes* – 4735 Coloplast
  • Ostoguard* – RMC1
  • La Vera* – 3300

These items can be obtained from a chemist.

  • Sudocream
  • Metanium Cream
  • Aloe vera (85% pure)

Anusol suppositories/cream are available via liaison with your Surgeon and Clinical Nurse Specialist.

Avoid the use of soap around the anal area, as it can be very irritating if left in skin crevices. Fragrance-free baby wipes are gentle and cleansing. Avoid tight garments if you are sore. For ladies, stockings may be preferable to tights.

What is pouchitis?

Pouchitis is an inflammation of the pouch causing some or all of the following symptoms: pain, frequent pouch function, some bleeding, a raised temperature, diarrhoea, urgency and a feeling of being generally unwell. Many of these symptoms may be similar to Ulcerative Colitis.

The causes of pouchitis are not properly understood. Research is on going. Some believe it is due to some residual stool remaining in the pouch after defaecation causing slight irritation/inflammation. To confirm a diagnosis of pouchitis it is necessary to have a pouchoscopy and biopsies taken. The biopsies are then reviewed by the pathologist who will then offer the diagnosis. It is difficult to predict those who will develop the condition. Most episodes of pouchitis can easily be treated with Metronidazole or Ciprofloxacin. Steroid foam enemas may also be used.

Occasionally some individuals are constantly troubled with pouchitis, such patients can be treated fairly successfully with a continual low dose of Ciprofloxacin. However these “chronic pouchitis” sufferers must be reviewed regularly.

If you experience any of the symptoms listed above, you should report to your doctor as soon as possible so that, if necessary, treatment may be commenced immediately.

How should I prepare for travelling abroad?

Many people have travelled abroad since their pouch surgery.

The important thing is to go prepared.

  1. Take a course of Metronidazole or Ciprofloxacin tablets with you in case pouchitis should occur.
  2. You are at an increased risk of dehydration if you are visiting a hot climate or should you develop a “tummy bug” as you no longer have your colon.

Therefore: –

  • Drink only bottled water unless you are sure tap water is safe – remember that beer/lager or tea/ coffee do not count as liquids for hydration!
  • Take extra Loperamide or whatever you are used to for slowing down your pouch output.
  • Take sachets of Dioralyte for the treatment of diarrhoea. Dioralyte is a powder containing salts and glucose and should be added to bottled water before drinking.
  • Avoid large/high fibre meals before long journeys or walks where toilets may be infrequently placed.
  • It is wise to seek some advice about medical insurance whilst abroad. You should also consider taking a letter from your GP explaining the medication you have been prescribed (if any).
  • Take your Kangaroo Club SOS card with you.

Can I carry on playing sports?

You will need to take sports easy at first, taking some time to recover from surgery. How long will depend on how fit you were pre-operatively, how active the sport and how strong you are feeling.

Any sport is OK. Water skiing can have an enema effect on some people, so wearing a wet suit may be advisable.

Scuba diving is slightly different, you will need to seek advice before going on your holiday. You must be able to pass wind easily to scuba dive with a pouch. If you have any problems passing wind, please seek advice from a medical officer attached to the British Sub Aqua Club/PADI.

Any exercise, which will make you sweat profusely, will necessitate fluid replacement. Isotonic drinks are helpful.

How will my sex life be affected?

Most people experience a temporary loss of sex drive (libido) after any illness or operation. Your surgeon will explain the risks involved in pelvic surgery otherwise you should not experience any problems. Occasionally if hugely concerned about the small risks of potential impotence following pelvic surgery for males, a referral to the Andrology Dept can be made for sperm saving. Often at a cost to the patient.

What is the effect of having a pouch on my ability to become pregnant?

Recent research has suggested that having an ileo-anal pouch can affect an individual’s ability to get pregnant. This is known as fecundity. It ultimately does not affect your fertility, but may limit your ability to conceive. It is advisable to discuss this in greater detail with the surgeon and nurse specialist, especially if you have not yet completed your family or are extremely concerned about this issue.

During pregnancy, the frequency of pouch emptying may increase due to the fact that the baby takes up space and presses the pouch.

In Oxford, women are advised to have a caesarean section delivery rather than a vaginal delivery. This is to avoid the risk of damaging the anal sphincter and adjoining muscles.

The oral contraceptive pill is usually absorbed in the duodenum, however because of the speedy transit of some foodstuffs through to your pouch, the pill may not be as effective as stated by manufacturer for patients with an ileo-anal pouch, therefore it may be necessary to also use an alternative method of contraception.

The Intra-Uterine Device (Coil) is a contraceptive device placed within the pelvis. Although infection rates are minimal there is a very small risk that it may affect your pouch if an infection did occur.

Please consult a doctor or nurse specialist to discuss contraception in further detail.

What are the best and worst things about having a pouch?

When asked if the operation was worthwhile 92% felt it was, with replies such as: –

  • “Yes! Yes! Yes!”
  • “Absolutely Yes” and
  • “Definitely. It has changed my life completely”.

When it came to describing the worst things about having a pouch the replies were varied, ranging from wind, pain, anal soreness, noises and smells, to the trauma of the settling down year, and the general lack of knowledge about pouch surgery by General Practitioners. However, when you are discharged from hospital your General Practitioners will receive a detailed letter from your surgeon about the operation you have undergone.

The benefits of having a pouch are seemingly endless but the people who responded to the questionnaire felt that the best things are: –

  • No bag worries
  • Freedom
  • Increased Confidence
  • Good Health
  • Improved body image and
  • “Being able to live a normal life again”

These FQAs have been complied with the kind support and permission of Colorectal Nursing, Oxford Radcliffe Hospitals. Please be aware that different hospitals may have slightly different schedules where timescales are given.

Individual contributors have been:

Catherine Meadows, Clinical Nurse Specialist, Julie Storrie, Staff Nurse, Mark Thompson-Fawcett, Research Fellow, Professor Neil Mortensen, Consultant Colorectal Surgeon, Jack Satsangi, Research Fellow, Angie Perrin, Clinical Lead Nurse Specialist Wendy Osborne, Clinical Nurse Specialist Janeane Dart, Chief Dietician

Last reviewed April 2011.

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