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Ileostomy Information


Recnetly I have been in contact with an individual named Terry Gallagher. He had an ileostomy formed after he had developed a gangrenous colon. He provided me with some information that he was willing to share, so feel free to take a look at it. This will probably be some good information that would help for the community project (if you do not know what that is see the thread in the announcement forum).

Ileostomy Formation

Prior to surgery, you'll be attending, I expect, a pre-admissions clinic where you'll be examined by a doctor who'll take a medical history, sound your chest, listen to your heart and check your blood pressure. You may sign your consent form at this time. You'll probably have to bring a urine sample which will be tested for diabetes by a nurse and someone will take bloods. These will be cross matched as you'll need a blood transfusion during the surgery - this is entirely routine and nothing unusual. Your blood will also be tested for several other things, U & E and so on. This is just to check you're fit enough for the surgery. You'll have a twelve lead ecg (electrocardiogram) and you may have a chest X-ray, although, when I was 52, I was been considered too young to need this!

On admission, after all the questionnaires and wrist bands, you'll be given one of these; Picolax, KleanPrep, Fleet Phospho-soda or Citramag. All of these are designed to empty you out, literally. You'll spend rather a long time in the toilet once they start to work. Citramag is usually a single dose, Fleet and Picolax are given as two doses several hours apart and KleanPrep is four litres to be drunk at the rate of 250 ml every quarter of an hour. On a personal note, the nurses are well used to people having bowel prep complaining of being sore because of having the 'runs' because of these very powerful laxatives (KleanPrep works rather differently - it isn't absorbed and literally just washes everything through you). They will provide a soothing cream on request (often zinc and castor oil cream). Picolax, as far as I'm concerned is the worst for causing a sore 'tail end' and needing some cream.

You may be given neomycin which is an antibiotic which sterilises the bowel - I've never had it, though. The night before your surgery, it may be a good idea to have already asked for a sleeping pill for that night to prevent your lying awake worrying - that's human and natural. On the day of surgery, you will be asked to have a shower, possibly using antibacterial soap to kill germs on your skin and then change into your theatre gown - the one with the open back and ties with most of the ties missing if it's a typical NHS gown! You will also be measured for and wear white anti-embolus stockings: these help to prevent blood clots and you may have twice daily injections of heparin to help to prevent clots as well. You may be lucky and get the once daily tinziparin which is more expensive, but does the same job. The anaesthetist will have seen you to discuss your anaesthetic and premed if he/she feels you need it. Pain control is usually by epidural as this prevents shock during the surgery as the body, even though anaesthetised, feels pain so the epidural stops that. Most of them work brilliantly - I'm just unfortunate! If the anaesthetist isn't a fan of epidurals (and most of them are these days) tell him about morphine. There are alternatives - I'm all right with pethidine for example. the stoma nurse should visit you and mark your stoma site for the surgeon. Two to three centimetres down from a line through the navel and half way between navel and the side of your body is about right, avoiding any awkward creases and below your belt line. You do not want your stoma at or above your waist.

These days you probably won't be shaved before the surgery - I wasn't shaved at all for mine. When the trolley comes to take you down to theatre, you'll have wrist bands checked and your name asked again and again - it's to make sure that the right operation is done on the right person. You'll be taken usually into a holding area and then into the anaesthetic room where you'll be checked again. You'll have a three lead ecg taped onto your chest, a blood pressure cuff around one arm and a pulse oximeter on a finger, usually not of the hand on the arm with the blood pressure cuff. The last measures your pulse rate and the amount of oxygen in your blood. Some anaesthetists insert the epidural while you're awake - others 'knock you out' first. If you have the epidural while you're awake, you'll sit on the trolley, bent forward, with a nurse in front of you to support you and your feet up on a stool. It sounds worse than it is, believe me. The thought of it was worse than having it done (and, yes, I've had it done both ways - awake and asleep). You'll have a cannula (Venflon) put into a vein in the back of your hand or lower arm. This tube is inserted into a vein and is taped down. After flushing it with saline to check it's working properly, the anaesthetist will inject a cocktail of drugs to put you to sleep. Once you're asleep, he'll put a tube down your throat through your vocal cords (you may have a slightly sore throat on waking because of this) and inflate a cuff around it to seal it in place. This is called an ETT - endotracheal tube. You'll be paralysed, so you'll be connected to a respirator though this tube. Your intestines 'wriggle' (it's called peristalsis) and so the surgeon needs to have this stopped or he couldn't operate. Again, this is normal. You'll probably have a central line put in to a large vein either in your neck or the upper part of your chest (I've had both) so that fluids can be administered easily. You may have a tube inserted into an artery in your wrist to monitor arterial blood pressure.

During surgery, your useless colon will be removed and the end of the terminal ileum (the small intestine where it joins the caecum near the appendix to become the large intestine) will be brought out through as hole made on the right hand side of the abdomen. The ileum will be turned back on itself like the cuff of a pullover, or trouser turn-ups and this is stitched to the surface of the abdomen to make the stoma. Make sure you ask for a decent spout on your ileostomy (2 to 3 cm - you don't want a short or flush stoma as it will be very difficult to care for). It is worth writing “Stoma spout to protrude between 2 to 3 cm when the post operative swelling has gone down” on your consent form. Whilst you're anaesthetised, you should have a naso-gastric tube inserted up your nose and into your stomach to drain off stomach fluids until your digestive system starts working again, several days later.

You will either wake up in recovery or in ITU or HDU. I've been in both the intensive care unit (reversal of my colostomy) and in the high dependency unit (urostomy) as well as nursed in an open ward when I had my ileostomy - the last because I didn't have an epidural, but was on pethidine PCA (Patient controlled analgesia - push the button every five minutes for another dose of pain killer). If you are in either HDU or ITU, the normal sort of stay for this type of surgery is 24 to 48 hours. You will have a clear ileostomy pouch over your new stoma which will be swollen from the bruising caused by the surgical procedure. It takes a few weeks to settle down and will be smaller by the time it's not bruised any more. that is why you'll need to re-measure your stoma every week for the first few weeks. Your stoma nurse should show you how to do this. There will be a 2 litre drainage bag attached to your pouch and you will use one of these at night to save getting up to empty your pouch. (more on this later) You will have either a latex or PVC drain connected to another 2 litre bag. This will be bloody - don't worry, it's supposed to be and will clear up when it will be removed once your abdominal cavity has stopped draining. It is stitched in and is not exactly comfortable to have removed. Take a deep breath as they pull it out - it helps. You will be on oxygen at first, again usual after any general anaesthetic. You may still be having a blood transfusion, but, more likely, will be on crystalloid infusions. These are saline, glucose and potassium chloride to keep you hydrated until you are able to be on free fluids and to make up your electrolyte levels in your blood. You will be monitored regularly, with the frequency decreasing as your condition improves and stabilises. The frequency of this is down to the practice of your hospital. In HDU, every quarter of an hour, then hourly, four hourly six hourly and finally twice daily is not uncommon. Your wound will be from just above your pubic bone to above your navel probably and will be closed with clips: these are so simple to have removed and are much better than stitches. They look horrible (NHS zip!) but remove oh so easily with the special clip removers. This normally happens after ten days. The naso-gastric tube will have a collection bag pinned to your gown and the tube will probably be aspirated (sucked using a large syringe) to keep your stomach empty.


Further information...

You will be got up as soon as possible to sit in a chair. This may be as soon as the next day or two days after surgery - three at the most. The 'physioterrorist' will have seen you before surgery to give you breathing exercises to do post theatre to keep your lungs clear. Ask for a hospital towel taped into a tight roll. Hold this against your incision tightly if you need to cough or sneeze - it helps! As soon as possible, you will be walking, even if you don't feel like it! The physiotherapist, to give her her proper name, does know what is best! They always gave up on me as I pushed myself harder than they tried to, so I could go home sooner. But don't go too hard - when your body says 'Enough!' - listen to it.

The doctors will listen to your abdomen daily to listen for bowel sounds which show that your digestive system has started working again. It shuts down because of the paralysing drugs and from being handled. Once bowel sounds are heard (hurray!) you'll be allowed sips of water, building up to free fluids over 24 hrs or so. The reason for the slow and careful build-up is to stop you being sick from rushing it - that would hurt (and I know 'cos it happened to me, which I why I asked for the naso-gastric tube which should have been put in in theatre and wasn't) Once you're on free fluids (and drink PLENTY) you'll be allowed the delights of yoghurt and ice cream, working up through mushy foods to a normal diet. Your stoma nurse should give you a list of foods to go careful with at first. Gradually clips and tubes will be removed: each one removed is a step nearer getting home!

At home, you'll change your pouch first thing in the morning when your digestive system is least active. You may have a one piece or a two piece system in the hospital. I prefer two piece (separate flange and pouch) as I can wear a belt to help top hold the pouch on and take the weight as it fills. It gives me more security, but you must decide what's best for you. A word about your stoma nurse. She may only tell you about one type of pouch made by one firm. She may send you home with the type of pouch you used in hospital, but encourage you, once your stoma has shrunk to its final size (but recheck every three months or so afterwards in case it changes slightly as it ages) to ask for samples of all the different ileostomy pouches. if the first is the case, then your stoma nurse is not being paid for by the hospital, but by one firm and her job is to push that firm's products only within the hospital. Given the choice between manufacturer paid nurse and no stoma nurse, the former is better - just! If that happens, once your stoma has settled down, get free samples from all the manufacturers and decide what YOU like best. It your stoma nurse isn't happy that you're using another company's products - tough! It's what's best for you that matters! I personally use Dansac Unique 2 pouch and flange (code 443-15) [the 43 is the size in mm - my stoma is 30 mm diameter so fits nicely inside the 43 mm ring of the flange which can cope with up to 35 mm stoma - your nurse will advise] because they stick well to me and don't cause any problems - BUT what works for me may not work for you, so ask every manufacturer and decide what YOU are happy with.

Once home, the district nurse will visit several times to check up on you and to make sure your drain site is healing properly (it's not stitched closed - it's just allowed to close over itself)

Drink plenty as ileostomists can dehydrate very easily if we’re not careful. our large intestines reabsorbed most of the water from our digestive system and, whilst the ileum does take over some of this job, it still doesn’t work as well on that score as the large intestine. We also loose salt from the ileostomy. We need to ADD salt to our food initially. As we also loose potassium as well as sodium, using LoSalt (a mixture of sodium chloride and potassium chloride) is helpful, as is eating potassium rich foods such as bananas and tomatoes each day. There is no need for drinks containing electrolytes if we eat a sensible diet in the light of the above. Do listen to lifting instructions to avoid hernias - let your doctor guide you.
How do I feel now? I wake up in the morning without abdominal pain. I don't have to go to the toilet to pass stool and sit there crying with the painful spasms which I used to get. I used to get faecal incontinence at times and had to wear absorbent pads all the time 'just in case'. My stoma pouch takes care of all that. Am I optimistic? You bet I am. A stoma can be a real benefit to improving one's overall health. It may not seem that way at first, but I can assure anyone reading this that it is true.


Im sure very helpful information for anyone about to have it done.
and also helpful stuff at the end about dehydration etc. thanks for sharing Mike.


Mama Crohnie
Athough this is really a good article, I have to disagree with some of his comments. Everybody's body is different, and to say what to expect after surgery is really not fair. These are the facts of his surgery, I know for myself..half of what he says here, did not pertain to me. However, I understand that he is trying to educate..and he does raise some valid points. I do absolutley agree with his points on Dehydration, it's essential for sure to drink all the fluids we can, and add salt in our daily diet, as the stoma lacks salt. Thanks for sharing this Mike