J Pouch Surgery - A Personal View

Please note that Martin is Scottish and talks about the NHS (National Health Service) but basically what he writes about should be able to be applied to most places in the world.

The first thing I should explain is that I am not a doctor and that any information I give you is based on personal experience and the result of being in contact with other ostomists and j-pouch people over the last 4 years or so. The most important thing about this situation is that everybody's condition is personal to them and so no two situations are absolutely identical.

Three of the more common reasons for Bowel surgery

My own condition was caused by a disease called Ulcerative Colitis which is more common than people think and leads to the large bowel (or colon) becoming inflamed, loosing its lining, and really severe cases, perforating and leaking into the surrounding tissues. It can be treated with steroids and anti-inflammatory drugs but when these fail, the only remaining solution is to remove the offending colon (Total Colonectomy) and either temporarily or permanently re-sight the exit from the Small intestine onto the outside of the abdomen and into what is called a "stoma" or artificial opening. (more of this below)

Another common cause of bowel operations is Crohn's disease. The symptoms in Crohns are very similar to those in UC - diarrhoea, bleeding and frequency of motions. The main difference with Crohns disease (as I understand it) is that the disease is not limited to the Colon but can appear anywhere in the gastro-intestinal tract from as high as the oesophagus down to the rectum although it is most commonly found in the bowel. Again the treatment is by removing or re-sectioning the affected piece of bowel - when all other treatment has been exhausted - and then diverting the output to a stoma. As I understand it (and I can only repeat what I've heard here because I do not have Crohns) the stoma in a Crohn's case can be temporary in nature and the two parts of the bowel may be reconnected after time. The biggest problem with the disease is that even when you have removed the bad bit of bowel, the disease can come back and start up somewhere else which is why J-pouch (see "options for surgery" below) is not always recommended in Crohns cases.

The third major cause of bowel surgery (and there are many other less common causes of which I am more or less ignorant) is Cancer of the bowel. I know very little about this except that it is treated in much the same way as the above two diseases, usually after chemotherapy has been tried, and the recovery and prognosis depends very much on the exact type of Cancer involved. If this is the condition from which you are suffering the best option is to speak to your surgical consultant for more information or to post another query on the club notice board for people who have the same condition.

Options for Surgery

Your own surgeon should advise you on what is best for your particular condition but I will try to explain the most common procedures. Another consideration is the sex of the patient and a good person to speak to here would be one of the specially trained "stomacare nurses" who operate as advisors and carers within the NHS.

I'll start by taking you through the operation that I have personally been through and then try to give you an idea of the other options and variations - again without knowledge of your exact condition its hard to predict what you'll be having done.

If you have UC (or possibly also for Crohns) the usual thing is to remove the Colon and replace it with an artificial rectum made from the last few feet of your small intestine which is then reconnected to the anus and restores the semblance of a natural opening. This is called a J-pouch or W-pouch or Koch's pouch ( all variations on the same thing). The operation is performed either as a 1, 2 or 3 stage operation although as far as I can tell the 1 stage is rarely carried out in this country and seems to be an American phenomenon. I had the 3 stage operation and I'll explain that in detail now ..... in the 2 stage operation parts 1 and 2 are combined into one procedure and performed together but this depends entirely on the fitness of the patient at the time of the initial surgery.

Ileostomy & J-pouch Surgery

Stage 1
Removal of the colon and formation of an end or terminal Ileostomy.

A relatively straightforward operation taking 30 - 40 minutes under general anaesthetic (GA for short). The abdomen is opened (depending on your surgeon it will be done either vertically or horizontally (sometimes in females they try to use a horizontal opening to disguise the scar in the natural folds of the skin afterwards - my wife had this for a hysterectomy and you can hardly see the scar today)). The large bowel is stapled at both ends and then removed. I didn't even have to stop eating until 8 hours before the surgery and I had no bowel prep (enema or laxative given to clean you out before surgery) because my surgeon said it wasn't necessary.

Some surgeons do like to clean you out first and the usual method is to have a drug called Picolax which you drink in two lots 24 hours before surgery. It tastes lemony and is reasonably pleasant. Its results are like turning on a tap and you spend 4 of the next 24 hours on the loo but it does clean you out.

Whether you will end up with a permanent or a temporary stoma is irrelevant at this stage because whatever the surgeon decides to do you will have some kind of Ostomy for a minimum of around 6 to 8 weeks and more usually longer than this .The ostomy is the opening which empties the bowel content into a bag securely fastened to the skin on the lower abdomen.

Before the op you should be visited by a stoma nurse who will show you the appliances available and help you understand how to fit the bags and also - if its done properly - mark you up with a marker pen on the spot where the new opening will be. They usually try to make it so that clothing will not interfere with it too much.

You will probably be given a sleeping pill the evening before your op. and at some time you will be required to shave the area ... depends on how much and where they are going to cut. You will be given a pre-med (usually something like valium temazepam or some such) to help relax you about an hour or two before surgery. You get into one of the so delightful "theatre gowns" at this point which you go into arms first like a short nightie but it ties at the back which is usually open and freezes your butt off. They also give you a sick bowl and a little elasticised cap to put on your head.

At the appropriate time you will be wheeled down to theatre where the anaesthetic will be given. Not all hospitals use the same method of anaesthesia and I can't comment on the method which I didn't have. In my case they used an epidural (a needle in the back). When you've arrived at the hospital they will have put various lines into your veins for use both at surgery and afterwards - at this point one of these will be used to administer the initial "knock out shot" and they talk you through it. I've had this done 3 times now and its the best part - you see the plunger on the syringe going down and the guy is talking to you and then it just gets all warm and then .................. you wake up and its all done.

When you wake up it will be in the recovery room and things may seem strange, you will probably be mildly disorientated at this point and feel tied down a bit - this is due to the fact that most of your muscles are still "sleepy" and also you may have various tubes draining from the wound site, the bladder and or the new stoma. You will also have lines going into you at this point and in most cases (at least where our surgeon works) you will have a central line going in to the neck which is giving you the best stuff of all - morphine. Morphine will be your friend for the next few days and, if its controlled properly you should not suffer undue pain. I won't say there will be no pain (for instance when they get you up for your first shower or when the physiotherapy team teach you how to breathe properly it will hurt) but with a good anaesthetic regime you learn to manage the pain. Some hospitals (mine is one of them) have recently introduced "analgesia sisters" who's only job in the hospital is pain management. The reason for this, I was told, is that the less pain the patient suffers, the faster they will heal so its in everybody's best interests to keep you comfy.

There are different types of stoma appliance and you may have a removable or a drainable bag to start with. The usual thing is to have a clear plastic bag to start with which allows the surgeons to inspect the stoma without disturbing it. It looks pretty gross to start with but you get used to it. Don't worry about the colour of the output which is a dark green liquid usually to start with - this is just bile as you haven't eaten anything and are on liquids only for 24 - 72 hours after the op. eventually it will settle down and be come a fairly liquid but sometimes a thick liquid consistency which, because the small bowel does not contain the bacteria which the large bowel contains, smells different to colostomy or normal faecal output.(see section on Colostomy below) When you first change the bag you will be assisted by the Stoma care nurses (if they operate in your hospital) and they will teach you how to take care of the appliance and the stoma which needs to be protect from bangs and bumps.

Getting up and about after the op is different for every individual but I know that I was one of these people who as soon as they had "forced me to stand up shakily and wobbly at the side of the bed" and got rid of the epidural tube in my back (about 36 hours post-op) I was raring to go. They fitted me with a morphine pump - its a little pump which administers morphine at a given rate into your arm. If you have increased pain you can press a button and it gives you more - up to a limit. With this pump on and a drip stand I actually walked the length of the ward 48 hours after my op. (The nurses said I was crazy but I have heard of others doing this type of thing). It is usual to get very down (mentally 4 - 6 days post op although the time varies with each individual) - don't feel you are alone if this happens to you - the nurses are aware of it and should be able to be supportive. You will feel better as time goes on.

When you go home - everybody is different so it can be anywhere from 8 to 18 days on average - you should be visited by the stoma care people who saw you at the hospital. They will visit you for a while until you are confident in your care of the stoma. You may also be visited by the local district nurse depending on what region of the country you live in. A post op surgical appointment should have been arranged for you where your surgeon will check everything over and review the next stage of your treatment.

It is at the point where you go home that the Internet ostomy and j-pouch support groups are very useful ( at least I found that to be the case) In these clubs you can talk and exchange concerns with hundreds of people who have gone through similar operations to your own and we are all here to help out with information both in the UK and all over the world. In general the treatments world wide are the same although the names of the drugs vary from country to country.

Stage 2
Creation of the J-pouch (Koch's pouch) and formation of a loop Ileostomy.

This operation lasts longer than the 1st stage operation and in my own case was 3 and half to 4 hours. Others have taken less - some have taken longer. This operation is often combined with the first stage operation if the patient is fit and relatively healthy and there is little danger of perforation and then forms the first stage of the so called two stage procedure. I will continue from the point at which the colon has already been removed. The last couple of feet of the small intestine or ileum is formed into a pouch by folding it over like a snake and then slitting and joining the adjacent sides. Imagine a garden hose with a slit running lengthways for about a foot - fold it over so that the two ends of the slits are next to one another and then join them up - the result is a piece of tubing twice as thick as the original tube which forms a chamber. See http://www.j-pouch.org for links to diagrams of the procedure. The main part of the rectum is then removed and the new j-pouch is attached to the anal sphincter which will be used to control the flow of the output. In order to allow the new pouch to heal properly it is necessary to create a temporary (or loop) Ileostomy which will be in place for a minimum of 6 to 8 weeks. In my case I had the temporary for 5 months before the "takedown" or reconnection was performed. If we go back to the garden hose analogy for a moment I can explain how the loop Ileostomy works. Taking hold of the hose at a point above the newly formed pouch we fold it over and push it through the abdominal wall onto the surface of the skin. We now have a very small loop no more than an centimetre or so of tube sticking out of the hole in the abdomen. Instead of cutting the loop all the way through (which would sever the top and bottom half of the Ileum) it is cut half way through on its outside edge and sutured into place. This allows the contents of the bowel to drain out of the new stoma and into a collecting bag without cutting off the continuity of the bowel into the healing j-pouch within. If this sounds complicated its easier to look at a diagrams at the J-pouch site above. Because the amount of bowel in this loop is very short it is sometimes necessary to wear a special type of appliance called a "convexity" with this ostomy - however I stress again "each case is different and you must consult with a stoma care nurse or surgeon for individual advice on this".

Preparation and recovery for this operation is almost identical as that of the previous stage so I won't dwell on it too much. You may find that you are required to stay in hospital longer after this operation as it is the more complicated of the two. Other than that, the support and aftercare should be the same as above and the preparation for surgery is the same also.

Stage 3
Takedown of the loop Ileostomy and reconnection of the pouch.

This is the 2nd stage of the two stage procedure and the third stage in the three stage procedure. This is a fairly straightforward operation for which the preparation is the same as the first two - except for the laxative which I believe is not given although I'm not sure. The operation takes place 6 weeks to 6 months after the previous stage and lasts for about 30 minutes. The surgeon will use a scope to check the pouch and then will excise the loop Ileostomy from the surrounding muscle tissue reconnect the upper and lower parts and pop it back into the abdominal cavity. You are now a through and through person again. The output from the J-pouch may be difficult to control at first but eventually it settles down (in most cases to an average 3 to 8 times a day depending on the individual) . The consistency of the output will never be the same as a "normal" bowel because the colon is not there to absorb all the liquid but, the new pouch usually learns to take up a lot of the liquid and the output will firm up over the years. Or so I'm told I've only had mine a year so I'm still learning.

Colostomy and other Ostomy Surgery

I have no direct experience with colostomy but the idea is similar to the Ileostomy stage one surgery above. The main difference is that where the whole of the colon is removed in the Ileostomy, only part of the colon removed or the rectum may be removed in the colostomy. The end result is that you wear an appliance (bag) on the abdomen as explained above but it tends to be slightly lower down and because the output is from the colon as opposed to the ileum, it is more like a normal bowel movement in both consistency and smell.

The other ostomy is a Urostomy where the bladder is drained artificially in to a collecting bag. This is used where the is damage to the urethra or the bladder itself and I know little about it.

Outlook and hope for the future

One thing that seems to be consistent among all the people I've talked to in the clubs online and in person is that whatever the surgery has been, assuming it was a successful surgery - the people have all had at least some improvement over their original condition under the shadow of the bowel disease they started with.

We all stick together in this condition - the main thing to remember is that You are not alone. Both the online clubs and chat rooms and also the National Association of Crohns and Colitis (NACC) or the British Ileostomy Society are all made up of people like me and you who have been there and done it and bought the T-shirts. An excellent site is the one run by Shaz in Australia. We have all been scared out of our wits at times, depressed to the point of no future at times, in pain or discomfort or just in need of someone to talk to - that's why these sites and clubs were formed - feel free to ask for help whenever you need it.

Most importantly - Good Luck with whatever you decide to do.

Martin

Links to Ostomy Group Sites

http://groups.yahoo.com/group/ukostomysupport - UK Ostomy Support

http://groups.yahoo.com/group/ostomatessupport/ - Ostomates Support

http://groups.yahoo.com/group/ostomysupport - Ostomy Support

http://groups.yahoo.com/group/jpouchsupport - J Pouch Support

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