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 An ileostomy Stoma (not mine) |  An ileostomy bag covering the stoma |
When most people are told that they need ostomy surgery, their first, completely normal, reaction is "No Way!" This is completely understandable - after all who wants a bag hanging off their side for the rest of their life? However, you will find that 99% of those same people say after surgery "Why did I wait so long? Why did I suffer all those years needlessly?". No, it is not a pleasant prospect knowing you need to have ostomy surgery but believe me, once you do have the surgery, in the majority of cases, you will be feeling healthier than you have in years and the bag rarely gets in the way of any activities you wish to pursue - rock climbing, hang gliding, flying, swimming, even sex!
In simple terms, an ostomy is a surgically-made opening into the body. Ostomies can be due to birth defects, disease or accidents necessitating the removal of the affected organs, usually bowel or bladder and the creation of a stoma (Greek word meaning "mouth") through the skin (usually the abdomen) through which the waste products now get expelled. There are different types of ostomies available and which one you have will depend on your illness, defect, etc:
A Colostomy is when only part of the large intestine is removed whereas an Ileostomy involves the removal of the whole of the large intestine and often the rectum as well. The distinguishing feature between a colostomy and an ileostomy is that in a colostomy, the stoma is made out of the large bowel and the stoma is therefore a little bigger than for an ileostomy where the stoma is made from the small intestine. Both colostomies and ileostomies can either be permanent or temporary. A Urostomy is when the bladder is bypassed or removed.
People with an ostomy will have what is called a "stoma" or artificial opening on the side of their abdomen through which the waste products pass seeing as they are now unable to go to the bathroom in the normal manner. The stoma is, basically, approx a one inch piece of intestine drawn out through an incision on your side through which the waste products are expelled. You can't feel it and how many people can say they've seen their intestines? (Yes, I do have "guts"!) Depending on the type of ostomy you have will depend on whether you need to wear a "bag" or just a small stomal cap over the stoma.
I initially had only my large intestine removed and my rectum left intact in the hopes that I could have a J Pouch constructed (see below) but had to have my rectum removed a year later as it was too severely diseased and so I was left with a permanent ileostomy. In this case the ileostomy can be referred to as a total proctocolectomy.
Stool in an ileostomy is usually of a paste-like consistency although at times it can be almost fluid like, depending on what you've eaten or drank recently.
Ileostomy complications include a prolapse of the stoma, parastomal fistulization, peristomal hernia, ileostomy retraction, high stomal output (ileostomy flux), and skin irritation.
Please discuss with your ET (enterostomal therapist - if you don't have one - ask your surgeon to recommend one. If he won't, contact your nearest Ostomy Association and have them recommend one for you - they are the most valuable tool you will have regarding your ostomy surgery - I cannot stress this enough!!!!) the best site for your stoma as where it is placed has a great bearing on whether you can sit comfortably, wear certain types of clothes etc later on (Please also read Important notice for those who've not had ostomy surgery yet). Your ET can observe you in a variety of positions and activities and then select an optimum site for your stoma. The site must be acceptable to you and well away from skin creases, prior scars, planned incisions, and any bony prominences. Ideally, the stoma is brought through the rectus abdominis muscle.
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Nipple valve slippage is a unique complication of the Kock's Pouch, making it difficult to irrigate or stop the stool coming out at odd times. It occurs in at least 25 percent of patients. The only satisfactory treatment consists of revision surgery with re-fixation of the nipple valve; ultimately, pouch excision may be required.
The Kock pouch is not recommended for those with Crohn's Disease as Crohns can come back and infect the internal pouch which is not a good thing!
People who have the conventional ileostomy with their rectum and anus removed may later on opt for the Kock's pouch if they desire. It can, in fact, be a good idea for those who have repeated skin problems and/or are allergic to the adhesives used in the wafers and bags.
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With irrigation, you basically give yourself an enema through the stoma with warm water at the same time each day. The bowel is slowly "trained" to respond to the stimulus and return the stool, along with the water, a few minutes later. The whole process usually takes from 45 minutes to an hour a day to complete. This enables to the colostomate to be fairly sure that the stoma will not work at any other time and so they can just wear a stomal cap throughout the rest of the day without fear of accidents. Until recently, it was considered strange and in some places, unacceptable if you didn't want to irrigate with a colostomy. Nowadays, the choice is up to you. You don't have to irrigate if you don't want to and a lot of people prefer not to. All it means is that you wear a bag full time as you have no control over when the stoma will work.
Most colostomies are sigmoid colostomies, ie the sigmoid colon is the part of the bowel that is bought through the abdominal wall and formed into a stoma, but a colostomy can be made from any part of the large bowel if necessary. The stool from a colostomy is usually firmer than that from an ileostomy. This is because most of the water is absorbed by the large bowel still intact in colostomates.
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This operation is usually done in one, two or three steps depending on your health and your doctor's preferences. During one of these stages, the surgeon will construct a temporary ileostomy for a few weeks or months in order to give your bowel time to heal before the final surgery.
As for the Kock pouch, the J Pouch is not recommended for those with Crohn's Disease as Crohns can come back and infect the internal pouch necessitating it's removal and therefore the removal of a length of bowel which a Crohnie sorely needs.
One of the biggest problems associated with this procedure is "pouchitis" - an inflammation within the pouch but in most cases this can be cleared up with the use of antibiotics. An acute attack of pouchitis is seen in approximately 50% of patients after 10 years, however, the incidence of chronic pouchitis has been increasing and it is currently approaching 8% after 10 years.
Chronic pouchitis is similar to the prior UC, with increased bowel movements, urgency, blood and mucus in the stool, and patients require medication to help clear it up. Although no cancers have been found, low-grade dysplasia has now been noted in 3% of pouches at 10 years and yearly checkups are needed to ensure that the rectum remains free of disease. Approx 6%, most of which is attributable to pelvic infection, of pelvic pouch patients end up having to revert back to an ileostomy and hence have to have the rectum removed, due to precancerous growths found later on in the rectum or poor functional results of the pouch itself (The Cleveland Clinic, one of the world's leading hospitals for colo-rectal surgery, puts the failure rate for the j pouch at approx 20% - 25%.)
"The increased number of bowel movements, chronic pouchitis and the need for surveillance will certainly diminish quality-of-life to some degree and, again, it has to be emphasised therefore, that this operation cannot be regarded as a cure for UC" (although I know a lot of people who would disagree - this bit is quoted from a medical document which I guess is looking at it from the medical side of things and not from a patient's point of view)
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The pouch works by storing the liquid waste which is drained several times a day, using a small silicone tube, called a catheter. This catheter is inserted through the opening on the abdomen into the pouch. The capacity of the internal pouch increases steadily after surgery, from 50ccs, when first constructed, to 600cc to 1000cc (about one quart) over a period of months, when the pouch fully matures.
The opening through which the catheter is introduced into the pouch is called the stoma. It is a small, flat button-hole opening on the abdomen. Most patients cover the stoma site with a small pad or bandage to absorb the mucus that accumulates at the opening. This mucus formation is natural, and makes insertion of the catheter easier.
The BCIR requires no external appliance; and, it can be drained whenever it is convenient. Most people report that they drain their pouch 2 to 4* times a day and most times they sleep through the night. Of course, this can vary - depending on what kinds and quantities of food one eats. The process of draining the pouch is simple and quickly mastered. The stoma has no nerve endings, and inserting the catheter is not painful. The process of inserting the catheter and draining the pouch is called intubation and takes just a few minutes.
The BCIR should not leak fecal contents because of the self-sealing valve mechanism and the innovative 'living collar' which is constructed from the intestine.
* The number of daily intubations may vary, depending on types of food and quantities consumed.
A retrospective outcome analysis was performed in 1994 on 510 patients who received the BCIR procedure between January 1988 and December 1991. The study was published in The Diseases of the Colon and Rectum, June 1995. All patients in this study were between one and five years post-op with an admitting diagnosis of ulcerative colitis or familial polyposis.*
The study found that approximately 92% of the patients have functional BCIR pouches at least one year following surgery. A total of 87.2% of patients required no or minor subsequent surgery to ensure a functioning pouch. Only 6.5% of the 510 patients required subsequent removal of the pouch. The majority of these pouch excisions (removals) occurred within the first year (63.6%).
Since it is performed relatively quickly and with a low complication rate, the ileal conduit remains the diversion of choice with most surgeons. Today, many patients opt for a form of continent urinary reservoir, which eliminates the need for an external bag. Some continent diversions have a small stoma on the abdominal wall. The urine is drained 4 to 6 times daily by placing a catheter through the stoma into a urinary reservoir made of bowel. The stoma which is flush with the skin is easily concealed with a gauze sponge. Other forms of continent urinary diversion have a urinary reservoir attached to the urethra and the patient voids normally through the penis.
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The most common form of temporary ostomy is the loop ostomy. A small part of the bowel is pulled through an incision in the skin and a small plastic rod is placed between the bowel and the skin to stop the bowel from slipping back in through the incision. (This rod is removed a few days later when the wound has healed enough to stop it slipping back.)
The loop of bowel that is exposed is then cut partway open (but not completely severed) during surgery. The result is two stomas very close together. One stoma is connected to the functioning part of the digestive system and will expel waste contents whilst the other stoma (called the mucous fistula) is connected to the now redundant lower part of the intestinal tract (ie anus and rectum) which basically are doing nothing but creating mucous. This mucous is a normal part of the body's lubrication system and it's not uncommon for small amounts of mucous to be expelled from both the stoma and the rectum.
Often the mucous fistula stoma is so small and insignificant that some people fail to realise that there is a second stoma there at all and become worried when mucous is being secreted from what appears to be a small crack in the skin below their main stoma.
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If the surgeon must cut out a section of diseased colon, then they may decide to do a double-barrel ostomy. As for the loop ostomy, there are two stomas but they are completely separated (ie the bowel is cut completely in half). Both the functional and non-functional stomas are bought through the abdominal wall. The second stoma, as per the loop ostomy, secretes mucous and you can quite often get away with just a piece of gauze covering it rather than a bag (although of course, a bag must be worn over the main stoma). If you are to have this type of surgery, make sure that your surgeons locates the two stomas away from each other. This makes them much easier to care for rather than having to worry about the one wafer appliance having to cover both stomas.
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Another temporary ostomy procedure is the Hartmann's Pouch procedure. This surgery leaves you with only one stoma and the non-functional end of the bowel simply stitched or stapled shut and left inside you until reconnection can take place.
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Temporary Urostomies are where one or both ureters are bought through the skin in loop ureterostomies; The ureter is not severed completely and, as in loop ostomies, there are two openings - one a functional stoma and the other one a non-functional stoma. This is most commonly done in children in the hope they can be reconnected later on.
Temporary ostomies can often be harder to care for than permanent ones. Loop ostomies may be several inches or centimetres in diameter and for the first few days following surgery at least, you will have the rod used during surgery to contend with as well when trying to fit your pouch. Your ET nurse will show you how to fit an appliance during this time. As the loop ostomy stoma is larger than a permanent stoma (because there are 2 stomas to contend with), you may have to use a larger wafer for your appliances than normal. It can also be irregular in shape, making it harder to get a good fit from your appliance but perseverance will pay off.
Please don't fall into the trap of "my ostomy is only temporary so I won't bother to learn how to look after it properly". If you don't look after your stoma and the surrounding skin, you will regret it as irritated skin can quickly become very sore if not treated immediately. You may also find that appliances won't stick well to your skin if it's not looked after which could well be a recipe for disaster.
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