MULTIPLE SCLEROSIS

ULCERATIVE COLITIS

With a condition like ulcerative colitis (U.C), with which you may have to live for many years, you will naturally want to understand the nature of the disorder and the effects it may have on your life. For this reason, we have prepared a series of 'Questions and Answers' which you can read and absorb at your leisure. This should not be a barrier to more personal communication with your doctor rather look upon it as something extra.

What is ulcerative colitis?

Ulcerative colitis (U.C.) is a disease of the lining layer (mucosa) of the large bowel or colon. This layer becomes inflamed and develops many tiny breaks in its surface (ulcers) which may bleed. The inflamed lining also produces an excess amount of normal intestinal lubricant - mucus - which may contain some pus. U.C. is a chronic condition - that is to say that it has a tendency to flare up from time to time over a number of years.

What is the colon?

The colon is that part of the intestine between the small intestine (where most of your digested food is absorbed into your system) and the anus or back passage, whence faeces (stools, motions, wastes) are discharged. That part of the colon immediately above the anus is the rectum. U.C. almost always involves the rectum, but the involvement of the rest of the colon varies from patient to patient. The figure shows inflammation in the rectum and the lower colon.

What does the colon do, and how does U.C. alter its functions?

The colon does two things. Firstly it extracts fluid from the liquid waste which enters it from the small intestine, concentrating this waste down to make solid faeces. In more severe U.C. this concentrating function becomes defective and the patient has liquid diarrhoea in addition to the discharge of blood and mucus. Secondly the colon acts as a reservoir for solid faeces, allowing about I 3 bowel actions daily. In active or longstanding U.C., this reservoir capacity is decreased, leading to more frequent bowel actions even in the absence of diarrhoea. When the rectum is inflamed this may lead to a very urgent call to visit the lavatory which may be impossible to resist.

What causes

We do not know what causes U.C., therefore our treatment for it is based purely on experience of many trials of 'anti-inflammatory' drugs. The disease probably represents an abnormal and prolonged response of the body to various forms of damage, infections and other similar injuries to the bowel wall which would normally be of trivial importance.

Is U.C. infectious?

No, it is not infectious, though various acute infectious diarrhoeas - usually acquired from contaminated food or water, can closely mimic the beginning of chronic ulcerative colitis. For this reason you may well have had samples of faeces sent to the laboratory at the onset of your illness in order to determine whether you have an infectious diarrhoea, or U.C.

Is U.C. caused by stress or worry?

No, almost certainly not. However, flare-ups of colitis often occur at times of personal stress, though usually the condition flares up for no obvious reason.

What causes a flare up of colitis?

Bowel infections, colds, 'flu, antibiotics and perhaps pain-killing drugs may all trigger an attack.

Can I pass U.C. on to my children?

U.C. is not strictly hereditary, for its transmission from one generation of a family to the next cannot be accurately predicted. However, it may occur in more than one member of the same family (for example father and son, two sisters). The likelihood of your children inheriting or developing U.C. is small.

Is U.C. to do with something in my diet?

Special diets have little part to play in the treatment of U.C., and we know of nothing definite in the diet which might cause or worsen the condition, though it is logical to go on looking. Occasionally, colitis patients who are not responding satisfactorily to treatment improve greatly on cutting like products out of their diets. A high fibre (bran) diet helps the constipation which often accompanies cases of colitis limited to the rectum and lower colon.

Is U.C. a form of cancer?

No - cancer is an uncontrolled excess growth of one part of a tissue - the colonic inflammation of U.C. is quite a different process.

Can U.C. go on to bowel cancer?

Patients whose entire colon is diseased and who have had colitis for many years have a greater risk than normal of developing cancer in the colon c rectum. This group of patients can develop 'pre-cancerous changes before the appearance of an actual tumour growth. By looking for these changes the doctor can decide which patients are at specially high risk and need surgery to remove the colon. Patients who have had colitis for ten years or more should seek their doctor's advice.

How is U.C. diagnosed?

U.C. is suspected on the basis of a story of bleeding from the colon with or without diarrhoea and pain. Once infection has been ruled out, then the diagnosis is confirmed by the typical abnormal appearances' of the rectal mucosa as seen by direct inspection with a special instrument - a sigmoidoscope, which is rather like a telescope. At the same time a snip of mucosa, a biopsy, is often taken to be looked at in the laboratory, for the U.C. mucosa has a particular appearance when examined under the microscope. Sigmoidoscopy will need to be repeated at future dates to assess whether the colitis is active or quiescent, and to gauge response to treatment. Initially it may be an embarrassing and uncomfortable test, but with continuing experience and a more relaxed attitude most patients learn to accept it as a minor inconvenience. The newer flexible instruments Isigmoidoscope and colonoscope) are more comfortable and pro-vide more information for the doctor.

A barium enema X-ray examination is used both at the onset of U.C. and from time to time in subsequent years, to assess how much of the colon above the rectum is affected by the disease. Many patients just have rectal disease Iproctitis) and the barium enema shows a normal colon. Does local colitis spread further up the colon over the years? Usually the amount of colon involved by U.C. remains more or less the same from one attack to the next. Sometimes the extent of disease gets less, and sometimes it may increase with successive attacks.

Will my colitis ever leave me completely?

The symptoms and signs of U.C. can certainly disappear for many years and even for a lifetime without any treatment. Unfortunately the more usual course is one of periodic flare-ups.

Is U.C. treatable?

Yes - very much so. However, it is not curable, for a short course of treat-ment will not stop it from ever coming back again - very few chronic medical conditions are curable in this sense. The only 'cure' is to remove the diseased colon by surgery.

Treatment with tablets and self administered liquid or foam enemas is aimed at settling down flare-ups of the disease, though many flare-ups would probably settle eventually on their own. Long term treatment with medicines such as sulphasalazine, mesalazine, azathioprine or related drugs is aimed at reducing the likelihood of a flare-up. (See the booklet 'Drugs Used in U.C. and C.D. - The Pros and Cons' published by N.A.C.C.).

Why do some patients with U.C. have operations?

All or most of the colon may be removed at an operation for various reasons:

1. If a very severe attack of U.C. is not getting better in spite of intensive medical treatment.
2. If repeated attacks over the years are harming the patient's well-being and not responding quickly to medical treatment, particularly in patients with involvement of most or all of the colon.
3. If the patient has repeated attacks of inflammation of other systems, such as the eyes, skin or joints, accompanying their attacks of U.C.
4. If there are serious pre-cancerous changes in the colon.

What operations are available to treat U.C.?

The three operations are:

1. Proctocolectomy and ileostomy
2. Sub-total colectomy and ileorectal anastomosis
3. Proctocolectomy with ileal reservoir

These rather formidable-sounding names are easily explained: In 1) the whole colon, including the rectum, is removed. The cut end of the lower small intestine is brought out onto the wall of the abdomen as a perma-nent spout-like opening (ileostomy) over which a bag is fitted to collect the discharge from the small intestine which would previously have passed on into the colon. An ileostomy and its bag can be sufficiently discreet not to show through the lightest of clothes, even bathing costumes, and should not interfere with any activities. In 2) about 90% of the diseased colon is removed, leaving the rectum and anus behind. The cut end of the lower small intestine is then joined to the upper end of the rectum. In 3) the whole colon and the lining of the rectum are removed. The ileum is brought down to the anal verge (ileo-anal anastomosis). To prevent frequent liquid bowel actions the lower small intestine is made into a 'reservoir' above this.

What are the pros and cons of proctocolectomy and ileostomy?

After total colectomy and ileostomy, U.C. has been 'cured', and with the cure goes a well-being often denied patients with recurrent bloody diarrhoea, poor appetite and weight loss. No longer is there any risk of bowel cancer. No longer does the patient need a mental map of all the lavatories to which he or she may need to rush, sometimes to arrive 'too late'. The price for this return to good health is an abdominal stoma (the opening in the side of the abdomen where waste matter is discharged into a disposable plastic bag). The stoma will need care and attention, often with the help of a special stoma care nurse. Both the physical, and of course the psychological, needs of the new ileostomist will be met by the very active national Ileostomy Association, run by patients for patients. This operation, of course, is irreversible unless the muscles around the anus are preserved, when a pouch operation may be possible subsequently.

What are the pros and cons of ileorectal anastomosis?

This operation just leaves a scar on the abdomen; no artificial opening. Faeces empty from the back passage normally but, because most of the colon has been taken away, faeces are usually loose or liquid, and some increase in the number of bowel movements per day is likely. The remaining rectum is as liable to flare-ups of colitis as it was before the operation, and also to pre-cancerous change. The patient with this operation may thus benefit greatly, but will continue to need specialist supervision. If necessary, further surgery can be performed to remove the remaining rectum and create an ileostomy.

What are the pros and cons of the ileal reservoir?

This is a technically difficult operation which is not appropriate for every patient. The operation is not available at every hospital. Usually a temporary ileostomy is necessary and thus two operations are needed before the procedure is complete. Infection at the site of the operation can be a problem. People who have this operation tend to have several bowel actions daily. Inflammation of the lining of the reservoir can occur which may cause diarrhoea with urgent bowel actions. However, this operation cures colitis and avoids a permanent ileostomy. For many patients it is very successful.

Is U.C. a dangerous illness?

U.C. is most dangerous if the first attack is very severe, particularly if this attack fails to come under control with medical treatment and requires emergency surgery. Subsequent relapses are seldom as severe as the first attack, and in the long term the disease is a threat to good health rather than to life. In patients with rectal disease (proctitis) only, good health is generally maintained and the only problems are an urgent need to open the bowels, and rectal bleeding.

What side effects should I expect from treatment?

Obviously your doctor tries not to make the treatment worse than the disease! Corticosteroid drugs (e.g. Prednisolone) which may be needed in large doses to control acute attacks of U.C., will often produce rounding of the face, excess appetite and mood changes. Doctors aim to avoid the long term use of very high doses of steroids, which lead to thinning of the bones, muscles and skin, high blood pressure and occasionally temporary diabetes. Patients on steroid tablets should carry a 'Steroid card'. Corticosteroid enema and foam preparations are usually free of side effects. Sulphasalazine (Salazopyrin) is usually well tolerated but in some patients can produce rashes, headaches, nausea and stomach aches or anaemia. It has been in use for over 40 years and its continuous use over months or years in low dosage (4 - 6 tablets daily) is very safe. In some men, Salazopyrin causes a temporary reduction in fertility though this returns to normal within three months of stopping the drug. Many patients note orange discoloration of the urine, which is quite harmless. Mesalazine and related drugs. These drugs are related to sulphasalazine but lack the sulphonamide component which is responsible for many of the side effects. Diarrhoea, headache or skin rash may occasionally complicate this treatment. Azathioprine, the other drug employed for long term maintenance treatment can produce nausea, a 'flu like illness or occasionally abdominal pain It can also produce low levels of circulating blood cells - hence the need for regular blood counts while on this drug

If I have mild U.C. does it need treating?

Many patients accept rectal bleeding or diarrhoea without seeking medical advice for surprisingly long periods However, regular bleeding leads to thinning of the blood (anaemia). Also it is likely that continuing colonic inflammation leads to scarring and narrowing of the lower colon and rectum with the likely conse-quence of irreversible frequency and urgency of bowel action.

Will U.C. affect my marriage?

Though U.C. may start at any age from under ten to well over eighty, it most commonly appears for the first time in the 20 - 40 age group, when one hopes for good health in order to cope with career, marriage, home-making and bring-ing up a family. As with any other chronically recurring disorder, sympathy and understanding from the patient's partner and family will help greatly to lessen the strains imposed by the illness. The intimate details of one's bowel functions are not something easily discussed even with a partner, and it is hoped that this booklet will give not only you but also your partner (if you have one) insight into U.C., while saving you the embarrassment of describing your problems in detail.

Will U.C. prevent or affect a pregnancy?

It is advisable to avoid pregnancy when your U.C. is active. You should take contraceptive measures if you are on azathioprine. Sulphasalazine, mesalazine and related drugs appear to be safe in pregnancy. Both steroid enemas and tablets may be needed during pregnancy to control flare-ups of U.C. There is no evidence that they harm the unborn baby. However, patients on large doses of steroid tablets are advised not to breast feed. U.C. is most unlikely to affect your pregnancies, or prevent you from having healthy babies. Equally, pregnancy is unlikely to make your colitis flare up, and may even cause it to improve - there is however a chance of a flare-up within a few weeks after delivery. Regarding contraception, the 'pill' will not worsen your colitis. There is a more detailed N.A.C~C. booklet entitled 'Pregnancy in Inflammatory Bowel Disease'.

Do I need to make adjustments in my lifestyle in order to bring about improvements in the disease.

Except for severe flare-ups of U.C., you will probably not require bed-rest in hospital or at home, or absence from work. However, U.C. patients will naturally make adjustments in their patterns of work, domestic and social activities in order to help cope with the frequency and urgency of bowel actions which accompany active phases of the disease. Prolonged travel and visits to supermarkets, for example, may be distressing prospects. Here again, the sympathy and under-standing of your family will lessen the embarrassment of desperate searches for a 'Public Convenience' sign. The 'Can't Wait' card produced by N.A.C.C. may be very useful.

Is any research done on UC

A very considerable amount of research is being done on U.C. and a related bowel disorder called Crohn's disease. It doesn't make headline news in the media because diarrhoea and rectal bleeding are unglamorous, and lack the emotional appeal of heart disease or nerve paralysis. Research both in the laboratory and on the ward is directed towards trying to find the cause or causes of the disease, in order to plan more effective treatment.