Ambushed from Within : The Other IBD, Ulcerative Colitis
by Stacia Harger
Ulcerative colitis is not a disease you hear about very often. It is referred to in hushed tones, thought only to be suffered by elderly people. Patients go to the grocery stores late at night to buy Imodiumï¿½ in bulk to help alleviate their diarrhea. They make excuses to not go to functions or out with their friends for fear that they will not be able to get to a bathroom in time.
Ulcerative colitis is one of the diseases classified as "Inflammatory Bowel Disease." The cause is unknown, but suspected to be from an attack of the immune system on the colon (Following ER). It is like a malfunction in the body that sends its immune system out to destroy invading organisms, but in this case, the "invading organism" is a perfectly healthy intact organ. This "attack" causes inflammation and ulceration of the lining in the large intestine (colon). Genetic factors also play a role; patients with a history of irritable bowel disease in their family are more likely to develop an irritable bowel disease themselves (HealthGate). The disease usually begins in the rectal area, spreading through the rest of the large intestine. Symptoms of ulcerative colitis can include abdominal cramps with bloody diarrhea containing mucus or pus, frequent and urgent bowel movements, fatigue, weight loss, loss of appetite, nausea, malnutrition, and anemia from the bleeding ("Ulcerative Colitis: Manageable, with a brighter outlook").
"The same causes that trigger the immune system to attack the bowel tissue can also cause it to attack other body tissues, causing complications, such as skin lesions, arthritis, inflammation of the eyes, or liver disorders, including jaundice and cirrhosis, which could necessitate a liver transplant.
"In severe but rare cases, known as toxic megacolon, the colon enlarges and distends. This will cause fever, abdominal pain, dehydration, and malnutrition. In this case, surgery is necessary to prevent the colon from rupturing (Rosenthal, 108)."
Ulcerative colitis may develop in any age group, but there are peaks at the ages of 15-30 and 50-70 years old (Applied Medical Informatics, Inc.). During the patient's life, there may be periods of remission and flare-ups. During a remission period, usually the maintenance drugs are taken to prolong the remission. At this time, the patient usually feels healthy with mild symptoms. Nevertheless, at any time, a flare-up may occur. A flare-up, also called an attack or relapse, occurs when the disease presents itself and its symptoms again. This can be anything from a mild flare-up to toxic megacolon. At this time, drugs may not always help control the disease.
It is important to point out that being diagnosed with ulcerative colitis puts the patient at a much greater risk of developing colon cancer later on in life. For each decade that passes after diagnosis, the risk of cancer rises astronomically. The risk of colon cancer estimated for patients suffering from chronic ulcerative colitis is 5%-10% after 10 years and 15%-40% after 30 years (HealthGate). For patients whose entire colon is involved with the ulcerative colitis, the risk of colon cancer may be as high as 32 times higher than the average person ("Ulcerative Colitis," NDDIC).
Ulcerative colitis is usually diagnosed by a doctor through a procedure called a colonoscopy. After a preparation the night before of a mixture of special laxatives to clean the intestinal tract, the doctor uses a scope, inserted rectally, to examine the large intestine and to take a biopsy of the tissue lining the colon. The tissue is then sent to a pathologist for examination to determine if it is colitis and if there is any sign of cancer or pre-cancer cells. While this procedure is not completely pain-free, it is a small price to pay for the benefits it has in an accurate diagnosis. Most patients are also given a sedative during the procedure to help alleviate any discomfort ("Diagnosing Crohn's Disease or Ulcerative Colitis: Inflammatory Bowel Disease").
There are several treatment options available to patients diagnosed with ulcerative colitis. If they are lucky enough to be one of those with mild to moderate ulcerative colitis, they can use medication to treat the disease. There are a wide variety of drugs used to help suppress the immune system from attacking the colon. Ulcerative colitis patients commonly refer to this as the "cocktail." The most common are the mesalamine based or 5-ASA drugs (asacol, pentasa, rawasa). Then there are the standard cortico-steroids (prednisone) given to most ulcerative colitis patients during a flare-up. If those do not work, they call in the big guns, 6MP drugs (purinethol, cyclosporine, azathioprine). All of these drugs have problems of their own. The 5-ASA drugs can cause diarrhea and mild cramping in some people. The 6MP drugs can severely impair the immune system and make the patient very tired. With the purinethol, there is also a risk of allergic reaction, causing pancreatitis. However, this is very rare. The steroids can do even more damage over a long period. Besides the normal "moon face" appearance they can cause from water retention, they can leach the calcium out of the patient's bones. They severely impair the immune system. In younger patients, steroids can stunt growth and development. With drug therapy, there is always the risk of a relapse, and the risk of later developing colon cancer is still present ("Ulcerative Colitis," NDDIC).
Ulcerative colitis patients may also choose from several surgical options for treatment. The main surgeries available are a colectomy with an ileostomy (removal of the colon with the construction of an ileostomy for use with an external appliance), a bi-continent ileostomy reservoir or BCIR (removal of the colon with the construction of an internal pouch emptied through the stoma with an appliance), and the ileal-anal pouch (removal of the colon with the creation of an internal pouch reattached inside to where the rectum used to connect to the colon). The last surgical option, which we will refer to as the IAP, is the option we will discuss in this paper. It is one of the more popular surgical procedures as it allows to patient to continue to pass stools in the same way as before the colon was removed.
As with any other medical condition, surgery is usually reserved as a method of last resort. On average, 20-25% of ulcerative colitis patients will eventually need surgery (Mediconsult.com Limited). The IAP would be eminent for a patient with ulcerative colitis who is diagnosed with acute ulcerative colitis, possibly even toxic megacolon. They may be resistant to drug therapy; either the medication cannot control the ulcerative colitis any longer, or their bodies cannot handle the medications, possibly due to an allergic reaction ("Treatment: Inflammatory Bowel Disease"). One of the most pressing reasons would be if evidence were found of pre-cancer cells in the colon.
As with any surgery, there are ideal patients and there are less than ideal patients. A good candidate for the IAP is a patient who is a healthy weight and well nourished. A person who is morbidly obese would not be a good candidate as the intestines may not be able to be stretched far enough to reach down inside the pelvic region to be reattached. If a patient were severely underweight and malnourished from the colitis, it may be necessary to do the surgery in three stages to allow the patient to regain strength. If the patient had previously had a total colectomy, they would have to still have their sphincter muscles intact in order to undergo the IAP procedure (Dominguez).
The IAP is not without risks. There is the possibility that once the colon is removed and the pouch is formed it will not reach far enough into the pelvic region to be reattached to the remaining rectum (Dominguez). In this case, a permanent ileostomy would be created. There is also the risk that reproduction could be affected. In the woman, the build up from scar tissue could interfere with the ability to become pregnant. In the man, the nerves to the reproductive organ could be damaged during surgery. While allowing continuation of sexual intercourse, it could cause the sperm to be misdirected into the bladder during intercourse (Jones). The surgeon is very careful to do as much as possible to prevent these things from happening, but there is always some risk.
There are post-operative complications to consider, also. Most of the complications related to this surgical procedure (both surgeries) can occur at any time after either surgery. The most common complications are pouchitis (a bacterial growth in the pouch due to inability to evacuate the pouch completely), small bowel obstructions, partial small bowel obstructions, abscesses, wound infections, surgical hernias, strictures (a buildup of scar tissue that narrows the evacuation passage), and fistulas (the formation of an abnormal passage connection from somewhere else to the pouch). Probably the most disheartening complication is a patient who has been diagnosed with ulcerative colitis, undergone the IAP, and then found out later that they have Crohn's disease, not colitis. Crohn's disease is not confined to just the large intestine; it can affect the entire digestive tract, thus making Crohn's patients bad candidates for the IAP (Dominguez).
The IAP surgery is done in two stages, normally (three stages is not uncommon). During the first surgery, the surgeon will open the abdomen and remove the diseased colon and the upper portion of the rectum. Then the surgeon strips the lining of the lower rectum to prevent the reoccurrence of the disease in the remaining portion of the rectum. The anal sphincter muscles are left intact to control bowel movements when the pouch is functioning.
An internal pouch is then created using the end portion of the small intestine. This pouch is most commonly called a J-pouch, due to its shape. However, some surgeons create S-pouches and W-pouches (Harms). While these pouches are able to facilitate a bit more waste storage, they are more susceptible to bacterial infections (pouchitis) due to not being able to evacuate completely. Also, the S and W pouches are more bulky and harder to fit into the pelvic region. The J-pouch is easier to construct, easier to fit into the pelvic region, and is easier to evacuate completely (Dominguez). This pouch is then pulled down and connected to the portion of the rectum remaining. Eventually, the pouch will take the place of the colon in storing waste between bowel movements.
A temporary ileostomy is then made to divert the stool material until the pouch has time to heal properly. It is normal for the patient to have the ileostomy for two to three months. An ileostomy is made by making a small incision off to the side and a little lower than the belly button on the patient. Then a small portion of the ileum (intestine) is pulled out through the incision and sutured to the skin. This is called the stoma (Michelassi, 352-353).
While the patient is recovering between surgeries, he or she will have to wear an external appliance to collect bowel movements as they pass through the ileostomy. This is done by a wafer being adhered to the skin around the stoma with a special kind of glue. A bag with a special connector around the opening on top then snaps onto the hole on the wafer that covers the stoma. There is a clip on the end of the bag that is removed to empty the bag during the day between changing out the bags and wafers. It is not uncommon to hear a gurgling sound at times coming from the stoma. This is normal. It is just gas passing through the ileostomy.
It is very important while a patient has an ileostomy that they get enough fluids and potassium. One of the main functions of the colon is to reabsorb fluid into the body. Without the colon, the body will have to relearn to do this through the pouch and small intestine. This will take time. In the meantime, it is very important for the patient to drink lots of water and juices (Ileal Pouch-Anal Anastomosis, 19-20).
The ostomy area must be cleaned very well and dried thoroughly each time the wafer is changed. The patient must take care the seal of the glue is secure. This will prevent any of the bowel material from touching the skin. If it does find its way to the skin, it can burn and irritate the area badly (Greene).
After two or three months, the surgeon will do a pouchogram (an x-ray of the internal pouch using a contrasting fluid) on the patient to make sure that the pouch has healed properly and thoroughly. It is a quick exam. After the surgeon has decided that the pouch is strong enough, the second surgery is scheduled (Ileal Pouch-Anal Anastomosis, 22).
The second surgery, referred to as the "takedown," is very short in comparison to the first surgery. During the takedown, the surgeon will unsuture the stoma from the abdominal skin, sew up the hole in the intestine, and push it back inside. Then the external wound will be closed. Some surgeons prefer to merely staple this wound in the middle and allow it to heal itself from the inside out. If this is done, sterile gauze will be packed down inside the wound and changed frequently.
The recovery time after the surgeries is moderate. The patient may not lift anything very heavy (over 10 pounds) for a month or so. Driving is not allowed for a couple of weeks after the takedown procedure. Over the next year, the patient's new pouch will stretch and expand, allowing more waste to be stored between bowel movements. It is important during this time that the patient tries to wait as long as possible to go to the bathroom when they feel the urge. This will help to stretch the pouch.
Overall, the majority of patients (90%) who undergo the IAP report that they are satisfied with their quality of life after the surgeries. Only about 10% of patients who undergo the IAP procedure experience any major complications. A small portion of patients (5%) will end up having their pouch removed, converting to an ileostomy. This is usually due to incontinence (the inability to control bowel movements) and chronic pouchitis (Dominguez).
After the surgeries, the patient has so much to look forward to in their life. There are no more drugs to take to control the disease. The patient is no longer drained and tired from the medications and the disease. The risk of colon cancer is non-existent, and they will never have to worry about a relapse again.
While the diagnosis of ulcerative colitis can be intimidating and scary, it is not the end of the world. Through the IAP, many ulcerative colitis patients have been able to return to productive, even normal, lives. It is the hope and answer to prayer for all patients diagnosed with ulcerative colitis, to be normal again. Moreover, if the patient is as lucky as I was, they will find a great surgeon and make many new friends through their experience.
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© Stacia Harger