How Can We Help?

  • Considering a Pouch?

      • Will I be suitable for a pouch?

        Given the specialist nature of having an internal pouch, this is something you should discuss with your surgeon. Not everyone is suitable for pouch surgery based on previous medical history and muscle function. Your surgeon will not recommend a pouch if you have Crohn’s disease, for example, given the risk of the disease occurring in the pouch. Conditions such as ulcerative colitis or Familial Adenomatous Polyposis (FAP) would not exempt pouch surgery, if muscle control is still good. Beyond the surgical aspect, you should also consider if a pouch would suit your lifestyle. They can take a while to settle down after surgery and are often not without risk, however many people are happily living with a pouch today as an alternative to a permanent ileostomy.

      • I am considering pouch surgery. Will it be performed at my local hospital?

        Given the specialist nature of pouch surgery, we strongly recommend you have the surgery performed by a surgeon who undertakes the procedure on a regular basis. Obviously your surgery will be undertaken by a skilled surgeon, however research undertaken as part of the pouch registry {link to registry} indicates that success rates are higher in hospitals where these surgeries are routinely performed. Discuss this with your surgeon and ask him/her what their success rates are and how often they perform the surgery. You are having the surgery and want to ensure the best outcome so you are entitled to ask the question without what may seem to be questioning the skill of the surgeon. Consider however that if the surgery is done at a hospital away from your local area, it may be difficult for relatives and friends to visit, however you should consider the longer term outcome rather than the short term hospital stay.

      • 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?

        This is not uncommon – the bowel produces mucus to lubricate and ease waste (poo) through the bowel. 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.

        There is less mucus noticeable once stool is being passed from the pouch. Additionally if you are new to surgery, the bowel may still be settling down.

  • Living with a Pouch

      • How often will I need to go to the toilet?

        While every case is different, clinical expectation is around 4-5 times a day, including at night. 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 while others will have the opposite effect. How many times you empty can be an early indicator of underlying problems, such as pouchitis, although there would usually be other symptoms alongside. If everything feels right but you empty 6-8 times daily, and you are happy with that, then that could just be how your bowel is working.

      • I’m having difficulty fully emptying the pouch – should I be worried about straining too much?

        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. If you look in ‘Past Events’ [link to pouch ‘Past Events’], a presentation on Biofeedback from one of our previous pouch information days may provide some guidance.

      • I’ve heard about ‘butt burn’, what is it and what can I do to prevent or reduce it?

        ‘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 large intestine, but now it has been removed these can still be active and cause soreness and irritation in the anal area. This is most common when people need to empty 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 toilet visit
        • Avoid rubbing with soap or a rough flannel
        • Moist toilet tissue offers a softer touch
        • Avoid excessive moisture, perfumed talcum powder and excessive use of ointments and creams
        • Wear cotton underwear
        • Consider thickening your bowel motions by changing your diet or taking medications, after referral to your GP or specialist nurse
        • Seek medical help should the problem persist
      • Will I still produce wind in the pouch?

        With or without a pouch or stoma, everyone generates wind in their bowel. There are many reasons for wind however It is typically caused by the foods we eat/drink and how active the bowel is. Passing wind with a pouch however can be a skill that needs to be learned. The fine nerve endings in the pouch are what give you the ability (and confidence) to know when the feeling is wind and when it is not. When it can be safely passed and when it cannot! Many living with a pouch suggest this can take time to develop and the safest way initially is to release the wind on the toilet. That way if you are not just passing wind, there is no problem with emptying the pouch.

      • Since my pouch was connected I suffer with wind and bloatedness, what can I do to reduce this?

        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.

      • What are psyllium husks?

        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 tract could become blocked. Psyllium is available from health food shops and is relatively inexpensive. Please read the label carefully before use.

      • Will I need to take any medicines?

        Some people with a pouch may take medication to slow down pouch output but we recommend you speak to your GP or specialist nurse first, if you have any concerns, so they can advise further. If you are regularly taking medicines for other conditions, your GP or prescribing nurse will have considered any impact with your pouch, as they did with your ileostomy. Some medications are designed to be more effective in different parts of the digestive tract (including the small and large intestine) so if new medication is prescribed, we suggest you remind the prescriber that you have a pouch so they can consider whether it may affect the absorption and efficiency of the medication.

      • The output of my internal pouch is a strange colour. Should I be worried?

        If the output is red in colour, it could be a sign of bleeding internally, however it could also depend on what you have been eating. Eating beetroot a little while before can make your stool red. If you notice a change in stool colour, think about what you have been eating. Foods with strong colours may be causing the pouch output to change colour given the time it takes for food to pass in to the pouch is reduced with the removal of the large intestine. If you have any concerns about pouch output and colour changes please speak with your specialist nurse or GP to get it checked out.

      • What is pouchitis?

        Pouchitis is inflammation within the pouch. Symptoms can include bleeding from the pouch, bloatedness, increased frequency and pain. Whilst the true cause is unknown, it is believed to be linked to people with a history of bowel inflammation. Where pouchitis is diagnosed (usually after biopsy), you will usually be prescribed a dose of antibiotics. A bout of pouchitis does not exclude you from further episodes therefore if you are experiencing these symptoms on a (semi) frequent basis, please discuss this with your specialist nurse for assessment. Antibiotics will not usually be given without a formal diagnosis.

      • Will I need to change my diet?

        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). There is no ‘hard and fast’ rule where food is concerned. Because we all enjoy different things, try new things in moderation and see how your pouch behaves before making any lifestyle changes.

  • Pouch Pregnancy

      • Can I have a family with an internal pouch?

        Many women have successfully conceived and carried a healthy pregnancy living with a pouch so it is certainly possible. Research has shown however that the chances of conceiving with a pouch are reduced compared to those living without a pouch and it is believed it is attributed to your previous medical history. If you are considering pouch surgery and a family, discuss this with your surgeon who may advise you to complete your family before having surgery although each case will be different.

      • Will my pouch be affected if I get pregnant?

        As the baby grows there is a chance that it may have a slight impact on pouch function as the baby pushes against the pouch although there are many women who have successfully carried a pregnancy with no issue.

      • Will I be able to have a vaginal delivery with a pouch?

        This is one to discuss with your surgeon or specialist nurse. However, to protect the integrity of the pouch during labour, they may suggest a Caesarean section.

“Living with a stoma doesn’t have to be a barrier to enjoying life”

IA teamed up with My Bag and I to release a documentary about living with a stoma. The documentary, directed by Michael Durban, tackles social issues facing ostomates today such as dating, sex, mental wellbeing and day to day living.

The documentary follows ostomates Elliot and Hari who discuss individually, in an honest and open way, how life with a stoma raised fears around dating with a bag and the pre-conceptions that many new to surgery often develop.

We smash those fears and show people that living with a stoma doesn’t have to be a barrier to enjoying life.