Abstract
The most common disease leading to the formation of a stoma is cancer. However, there are many other diseases that affect the gastrointestinal or urinary system that may also require either a temporary or permanent stoma to be formed (a colostomy, ileostomy or urostomy). Stoma-forming surgery may be undertaken for a number of reasons, such as to eradicate a disease or improve the patient’s quality of life. Cancer, inflammatory bowel disease and diverticular disease are the most common conditions that lead to stoma formation. However, faecal incontinence, familial adenomatous polyposis, Hirschsprung’s disease, spina bifida and Ehlers-Danlos syndrome may also require a stoma to be formed. The nurse’s role in caring for these patients at a potentially traumatic period of their life is discussed.
Key words: Stoma care * Nursing: role
A stoma is a Greek word for mouth or opening (Williams and Ebanks, 2003) and is in this context used to describe a colostomy, ileostomy or urostomy (Figure 1To form the stoma a segment of bowel is brought out of the abdomen through a surgical incision. A colostomy is formed using colon to divert flatus and faeces from the body. A colostomy may be temporary or permanent and is usually formed from the sigmoid, descending or transverse colon (Black, 2000). An ileostomy passes faeces via the ileum.The faeces contain potentially corrosive enzymes so the stoma is formed with a 2 cm spout to keep the loose faeces away from the body (Nicholls, 1996). A urostomy diverts urine from the ureters and kidneys to a segment of bowel, usually the ileum, to which they are anastomosed (joined). The bowel (conduit) is then brought out through the abdomen and can also be known as an ileal conduit (Burch and Sica, 2004).
This article explores the common diseases resulting in stoma formation, such as colorectal cancer (CRC), through to hereditary bowel disease, such as familial adenomatous polyposis (FAP). Also discussed is diverticular disease that may result in emergency surgery if perforation of the colon occurs.
Cancer
CRC predominantly affects people aged 50-70 years (Ward and Stanford, 2003).The aetiology is not fully understood but CRC may be related to low-fibre and high-fat diets with associated lack of exercise (Black, 2000).There is also a major genetic influence (Finlay, 1997). Symptoms for CRC often include altered bowel habit with or without rectal bleeding (Northover et al, 2002).The type of surgery and therefore the resultant stoma depends upon the position and extent of the cancer. Any type of stoma may be formed, with some stomas being permanent and others reversible. If the cancer is very low in the gastrointestinal tract, such as the anal canal, a permanent colostomy would be performed if surgery was indicated as part of the procedure of an abdominoperineal excision of the rectum. If there was a high rectal cancer, the surgery could be an anterior resection with a temporary ileostomy (Nicholls, 1996).
Survival from cancer is directly related to the severity of the disease and diagnosis. Thus, nurses have an important role to play to encourage early consultation with doctors if symptoms appear (Nattress, 1999). A patient may in passing mention symptoms to the nurse when being seen for other reasons. This is particularly important for those nurses working in the community who may have cared for a patient long term, building good rapport and trust – with the patient; thus, the opportunity for the patient to discuss other health concerns may arise.
Inflammatory bowel disease
Inflammatory bowel disease (IBD) is an umbrella term for ulcerative colitis (UC) and Crohn’s disease (CD). UC is a disease of the whole or part of the colon (large bowel), affecting the mucosa, causing diarrhoea with blood and mucus (Kamm, 1999).The incidence is about 7 in 100 000 of the population (Forbes, 2001). Aetiology may be related to genetics and/or the environment (Ward and Stanford, 2003).The treatment may be medication, such as steroids (Kamm, 1999) or surgery. Surgery may be elective or emergency. Elective surgery often entails the removal of the rectum and colon. There may also be the formation of an ileo-anal pouch (Williams, 2002), where the terminal ileum is formed into a pouch (neo-rectum) and anastomosed to the anus. An ileo-anal pouch retains intestinal continuity, usually requiring a temporary ileostomy to protect the healing pouch. A panproctocolectomy is the removal of the anus, rectum and colon resulting in a permanent ileostomy. If the surgery is an emergency then it is likely to be only a subtotal colectomy (removal of the colon, but retention of the rectum) resulting in a temporary ileostomy.
The nurse can assist patients in their choice of surgery by providing them with information or making appropriate referrals as required. There is still the risk of pouchitis (inflammation of the pouch) or pouch dysfunction (Nicholls and Williams, 2002). Nursing support is essential both pre- and postoperatively to assist patients to adjust to their surgery. The nurse can inform the patient that often pouchitis quickly resolves with antibiotic therapy, and evacuation problems from the pouch can resolve with biofeedback training of the bowel.
Figure 1. Different types ofstoma.
CD is a chronic, inflammatory disorder that affects any part of the alimentary tract from the mouth to the anus (Ward and Stanford, 2003). CD causes similar symptoms to UC but there may also be associated weight loss and anorexia (Kamm, 1999). The incidence is greater than 5 in 10O 000 of the population and appears to be increasing (Forbes, 2001). The aetiology is unknown but may be related to genetics, diet and/or environment components (Black, 2000). Treatment for CD may involve surgery. Surgery may include resection of the affected bowel, although recurrence of the disease is common. Surgery may result in a permanent stoma, either colostomy or ileostomy, depending on the affected bowel. However, it is possible for a temporary stoma to be formed to allow the bowel to rest (Black, 2000).
The nurse can prepare the patient for surgery and a stoma by providing accurate, relevant and up-to-date information about the operation. This can be in the form of written or oral information. The outpatient nurse may be the first point of contact and he/she needs to make the appropriate nursing referral. The IBD or stoma care nurse specialist may be useful for counselling and information giving. When the patient is admitted to the ward for surgery the admitting nurse can further assist the patient, by answering his/ her questions and alleviating anxiety by giving advice and reassurance. Nurses are invaluable in this situation, providing the patient with simplified explanations of complicated surgery.
Diverticular disease
Diverticular disease is a condition where small pockets (diverticulae) form on, and protrude from, the bowel. These pockets may become inflamed (diverticulitis) (Figure 2). Diverticular disease is common in older people, with one-third of people over 60 years of age being affected (White, 1997). The cause of diverticular disease may be related to a poor diet, lacking in dietary fibre (Blackley, 1998). This is thought to reduce the transit time, producing small hard faecal pellets. These pellets require more contractions to pass them out of the body and thus increase the pressure on the bowel 1WaIl and may lead to the formation of diverticulae (Ward and Stanford, 2003).The nurse can assist the patient with diverticular disease by providing advice on increasing fibre to 3Og (Emmanuel, 2004) and fluids to 1-2 litres a day (Blackley, 1998), to prevent constipation and straining to pass a bowel motion.
The usual symptoms reported for diverticular disease range from no symptoms to abdominal pain, distension and constipation (Ward and Stanford, 2003). Treatment usually consists of dietary fibre and/or bulk laxatives (Emmanuel, 2004). Surgical options may be planned for repeated bouts of divcrticulitis or abscess formation. However, in the emergency situation, if the diverticulae perforate, surgery may be unplanned. A defunctioning stoma may be required or a Hartmann’s procedure (removal of the sigmoid colon +/- part of the rectum) with a resultant temporary colostomy usually performed (Williams and Ebanks, 2003).
Incontinence
Faecal incontinence affects about 1% of the population in the UK (Norton and Kamm, 1999). Faecal incontinence can be seen as the involuntary loss of flatus or faeces (Stuchfield and Eccersley 1999). This may be as a result of obstetric injury or congenital abnormalities. Sphincter repair or artificial sphincters may be of benefit to some patients to improve their continence (Ward and Stanford, 2003). Although repair is often successful, the long-term results are unknown (Malouf, 2004), but if surgery is unsuccessful a colostomy formation can greatly increase the quality of life for the patient.
People often consider that faecal incontinence is socially unacceptable and those that choose a stoma in preference to faecal incontinence often state that a stoma gives them back some control (Williams, 2004). This may be owing to the colostomy output being contained in a stoma appliance, so there is no odour and more security compared to the potential risk of anal incontinence. Thus, a stoma may give a patient the confidence to leave the house without the f\ear of soiling his/her clothes.
However, there is a risk of periodic mucus leakage from the rectum (“which is usually retained) and the patient needs to be informed of this potential problem by the nurse. Anecdotally, treatment for mucus leakage can include trying to pass the mucus into the toilet or, with the aid of a glycerine suppository, at a planned time each day, or each week, depending on the frequency of the passage of mucus.
Patients tend to cope with incontinence or a stoma better with nursing support and advice; thus, empathy can assist this group of people with a potentially embarrassing condition. The nurse should advise the patient that although a colostomy is generally an improvement on faecal incontinence, it is not without its drawbacks, as discussed.
Urinary incontinence, if treated unsuccessfully with either medication, such as oxybutynin, or surgical repair, may be resolved with the formation of a urostomy (Ward and Stanford, 2003); however, this is a very uncommon reason to have a urostomy (ileal conduit) formed.
Familial adenomatous polyposis (FAP)
FAP was previously known as polyposis coli (or, if extra colonie manifestations are present, Gardners syndrome). FAP can be seen as 100 or more tubovillous adenomas in the colon and there may be other manifestations. Any polyps left untreated will inevitably become malignant. Diagnosis is usually made in the teenage years and thus cancer will usually develop by the age of 35 years (Ward and Stanford, 2003). However, FAP accounts for less than 1% of all CRC with an incidence of 1 in 10000 of the population in the UK (Neale, 1996). FAP is an autosomal dominant disorder, meaning that for every child born to a parent with FAP there is a 50% chance of inheriting FAP (Neale and Phillips, 2002).
The treatment for FAP is usually a subtotal colectomy with an ileo-rectal anastomosis (IPvA), a restorative proctocolectomy (RPC) with an ileo-anal pouch or a panproctocolectomy with a permanent ileostomy. With an IRA the patient still retains the rectum. An ileo- anal pouch with a temporary ileostomy is a useful alternative; this allows removal of the rectum and maintenance of intestinal continuity (Ward and Stanford, 2003). Finally, there is the option of a permanent ileostomy, allowing the removal of the diseased colon. This option is advisable if anal sphincters are weak and thus there is a risk of faecal incontinence. Many patients prefer to have a sphincter-saving procedure, i.e. an IRA or RPC, but they need to have education, by the nurse, to ensure that they fully understand the implications of this choice. With an IRA, regular surveillance of the retained rectum is required, to detect for polyps. A RPC usually involves between one and three operations.
Hirschsprung’s disease
Hirschsprung’s disease is rare affecting only 1 in 5000 (Hanneman et al, 2001) with a 4:1 male:female ratio (Telander and Brennom, 1997). Hirschsprung’s disease is congenital and affects the colon. In Hirschsprung’s disease the nerves are incomplete and ineffectual, caused by the absence of ganglion cells, usually in the rectum (Ward and Stanford, 2003).There may be a large (5% of cases) or small section of the bowel affected, with 25% of cases affecting the rectum and 50% affecting the sigmoid colon (Fitzpatrick, 1996). The symptoms of the disease are constipation, abdominal distension or intestinal obstruction from birth, leading to megacolon (Keighley and Williams, 1993). The abdominal distension is owing to the inability of the infant/child to pass flatus or faeces, which differs from a child with simply constipation, who would not be distended. The precise aetiology remains unknown, but is likely to involve abnormal development or genetic factors, but there may also be environmental factors involved (Keighley and Williams, 1993).
The surgical options include a Soave or a Duhamel’s procedure (both procedures are also known as a pull through). The surgery involves the removal of the affected bowel and the bowel is pulled through to rejoin continuity. A temporary colostomy can be made to relieve intestinal obstruction, or an ileostomy if there is a long segment of colon affected (Fitzpatrick, 1996). A stoma may need to be formed and is usually reversible (Anderson, 1998). Some surgeons consider that the treatment should be a colostomy and then a pull through at 6 months old or simply a pull through. Other surgeons consider a colostomy unnecessary at any stage of the procedure (de Lagausie et al, 1998). The nurse -will need to support the child’s parents/carers at this difficult time by providing information.
Figure 2, Diverticular disease.
Figure 3. Spina bifida caused by a gap in the spinal column during foetal development.
With any surgery there are potential risks and the ones that this patient group are more prone to are anastomotic strictures and faecal incontinence (Telander and Brennom, 1997). Incontinence appears to be a long-term problem with many patients, and the extent of the aganglionosis in relation to incontinence appears irrelevant (Ludman et al, 2002). This is something that nurses need to be aware of in order to provide advice and support to the patient and his/ her parents. The author has met several adult patients who have chosen a permanent stoma over faecal incontinence in later life.
Spina bifida
Spina bifida is an abnormality of the central nervous system, which affects about 1.5 in 1000 births in the UK (Ward and Stanford, 2003). When the foetus develops there is a gap in the spinal column and the spinal canal may protrude through it (Figure 3). For some people spina bifida causes problems of neurogenic bladder (where the nervous control of the bladder is defective), leading to urinary incontinence (Black, 2000).
One option is intermittent catheterization if nerve damage causes the patient to have urinary retention. Intermittent catheterization differs from a normal urinary catheter in that the bladder is emptied using the catheter as required (see Figure 1). However, if the patient remains incontinent the formation of a urostomy (ileal conduit) may be necessary (Ward and Stanford, 2003). This is where a segment of bowel (usually the ileum) is used to make a conduit (passage) for the urine to pass out of the body. This is achieved by anatomising the ureters onto the bowel and the bowel onto the abdominal wall as a stoma. The nurse can assist the patient by providing support and advice to enable an informed choice to be made.
Ehlers-Danlos syndrome (EDS)
EDS is a hereditary disorder of the connective tissue, more particularly defective collagen (Barabas, 2000). EDS has a prevalence of 1 in 5000 (Carley and SchafFer, 2000). Failure to recognize the disease is common owing to the phenotypical variances of the syndrome (Maltz et al, 2001). Diagnosis is often difficult and only made after a catastrophic complication (Pepin et al, 2000).There are 10 types of EDS with most associated with skin hyperflexibility joint hypermobility and tissue fragility (Rowe et al, 1999). However, type IV EDS has, for example, the unique complications of arterial, colonie and uterine rupture.
There is currently no medical treatment available for EDS and patients are encouraged to minimize the risk of trauma by avoiding surgery, if possible (Maltz et al, 2001). Ruptured bowel, often in the sigmoid colon, may be secondary to megacolon (Sentongo et al, 1998) caused by constipation. Bowel rupture accounts for a quarter of all complications (Pepin et al, 2000), but this rarely leads to death (Pepin et al, 2000). Rupture may result in the formation of a colostomy after a partial colectomy or an ileostomy after a total colectomy. It is usually possible for stomas to be closed.
Complications associated with this patient group include death from arterial rupture (Pyeritz, 2000) or excessive bleeding during surgery (Giunta et al, 1999). Postoperative complications may also occur owing to the tissue fragility and poor wound healing. Problems may include dehisced wounds and fistulae. Pregnancy and childbirth is often a risk for people with EDS owing to the risk of womb rupture and bleeding. Patients are also prone to prolapsed bladders or wombs and urinary incontinence as a result of weak collagen (Carley and Schaffer, 2000). Thus, the nurse needs to be aware of these unusual complications and observe for them. The author has met only one patient with EDS who had an ileostomy for slow transit, which was complicated by bleeding during surgery.
Conclusion
There can be a variety of different reasons that stomas are formed and this article by no means covers them all. Greater understanding of the disorders requiring stoma formation will improve nursing care given to patients who require stomas. Some diseases require other considerations, e.g. CD may recur despite surgery. EDS requires thought and discussion with the patient before surgery is even considered and careful nursing observations afterwards. Hirschsprung’s disease may lead to faecal incontinence into adult life and patients or parents need to be made aware of this fact. Nurses are in a position to help and support patients using their skills and empathy. Nurses’ knowledge is a powerful tool that nurses need to continually improve upon as this leads to improved patient care.
KEY POINTS
* Cancer is the most common cause of stoma formation.
* Inflammatory bowel disease, e.g. Crohn’s disease and ulcerative colitis, may also lead to a stoma, although sphincter-saving procedures may be suitable, if preferred.
* Diverticular disease may lead to perforation or abscess formation and this may require the removal of the affected colon and a temporary stoma.
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Jennie Durch is Clinical Nurse Specialist – Stoma Care, St Mark’s Hospital, Harrow, Middlesex
Accepted for publication: December 2004
Copyright Mark Allen Publishing Ltd. Jan 27-Feb 9, 2005
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