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About Crohn's Disease

About Ulcerative Colitis

A recent issue of Woman's Day magazine (Sept 25th, 2000) features the case of a NZ woman with Crohn's disease who died after contracting chickenpox (varicella). At the time she was taking prednisone. This case has highlighted a rare, but potentially serious, adverse effect associated with taking corticosteroid medications ie. an increased risk of infection.

Chickenpox, corticosteroids and IBD

Treatment with oral or injected ("systemic") corticosteroids, such as prednisone, suppresses the immune system. Therefore, the risk of getting any bacterial, fungal or viral infection is increased while you are being treated with systemic steroids. The severity of any infection that develops is also increased. Patients who are often treated with systemic steroids include transplant recipients and those with moderate-to-severe inflammatory bowel disease (IBD).

Chickenpox, known medically as varicella, is caused by a virus. In healthy children chickenpox is usually only of mild-to-moderate severity and gets better by itself over time. Thus, no specific antiviral treatment is given. However, chickenpox may be more severe in adults, and the situation is especially complicated in those whose immune system is suppressed, such as during systemic steroid therapy. In particular, complications of chickenpox can include pneumonia, hepatitis and coagulation problems. Immunocompromised adults are more likely to develop these serious conditions, and may not even show much of the rash usually seen with chickenpox in children.

Chickenpox has been reported in a small number of patients with IBD, and has resulted in death on a few occasions. It is therefore a relatively rare occurrence. However, being aware of this association is important as early intervention after infection with varicella improves the chances of successful treatment. The UK Committee on Safety of Medicines recommends the following steps to reduce risk of developing chickenpox in patients receiving systemic steroids: patients should avoid close contact with others who have chickenpox if exposure to chickenpox is suspected, medical help should be sought immediately chickenpox should be suspected in patients taking systemic steroids who present with fever and systemic illness.

What can be done?

Patients exposed to chickenpox can be immunised with varicella-zoster immunoglobulin to prevent development of chickenpox or minimise disease severity. If chickenpox has already developed, antiviral agents such as aciclovir should be given immediately. Corticosteroids should not be stopped abruptly, but the dosage may be reduced. In addition, any other immunosuppressant agents should be stopped (eg. azathioprine).

Important points

1. When taken during the incubation period of chickenpox (10-14 days before the rash appears) systemic steroids prevent the patient from mounting an adequate immune response to the viral infection
2. Fatal cases of chickenpox have only been reported in patients receiving high dosages of systemic steroids
3. Early intervention improves the chances of successful treatment

References

Mouzas IA, et al. Management of varicella infection during the course of inflammatory bowel disease. American Journal of Gastroenterology 92: 1534-1537, No. 9, 1997.

Rice P, et al. Near fatal chickenpox during prednisolone treatment. British Medical Journal 309: 1069-1070, 22 Oct 1994.

Severe chickenpox associated with systemic corticosteroids. Current Problems in Pharmacovigilance 20: Feb 1994.

SUMMARY

• Death from chickenpox infection is extremely rare
• In adults, chickenpox is a more serious infection than in children
• Reduced immunity can result from taking prednisone
• Chickenpox is most hazardous in those with reduced immunity
• In adults with chickenpox a rash does not necessarily develop
• If you have IBD and are taking prednisone DO NOT STOP taking it
• If you are taking prednisone and have IBD and come into contact with someone with chickenpox see a doctor immediately
• If you have any concerns about your medication, adverse effects from taking your medication, or chickenpox, consult your specialist

130 CCSG members completed and sent back the questionnaire which was included with a previous issue of the CCSG News. Here is a report about alternative therapies that members have tried (and their results!).

Many members have tried an alternative therapy
38% of members reported trying alternative treatments (ATs) with a further 5% explicitly indicating their interest. It was common for members to have tried more than 1 AT.

Dietary Factors
3% of members reported using fibre supplements such as psyllium and metamucil. The use of oats and millet was also reported. 19% explicityly reported adjusting their diet in some way, and it was not uncommon for this to be part of naturopathic treatment. There is probably a higher incidence of dietary modification than this, much of it not being considered as part of treatment, or specifically reported. Some form of dietary adjustment was found to be useful by 72% of members. The top 10 foods eliminated were: dairy products, wheat, sugar, yeast products, alcohol, high fat foods, spicy foods, tomatoes, cabbage/cauliflower, and some fruits.

Supplements
These were taken by 21% of members, often with a herbal product as well. This makes it hard to comment on the effectiveness of supplements alone, however 63% of members trying supplements as part of their treatment found them helpful. The 10 most helpful supplements were: acidophilus (supplement or yoghurt), fish oil, evening primrose oil, folic acid, zinc, magnesium, B vitamins, vitamin C, multivitamin tablets, and food digestion pills.

Herbs
31% reported taking herbal preparations, including those specifically mentioning herbs as part of other treatments such as naturopathy. 65% of members taking herbal preparations found them helpful. Helpful herbal preparations included slippery elm, spirulina, chorella, aloe vera, St John's wort and echinacea.

Naturopathy and Homeopathy
Homeopathy and Naturopathy were tried by10% and 5% of members, respectively. The number of members finding these 'helpful' was was 77% for homeopathy and 33% for naturapathy. Looking at the results in the Supplements and Herbs sections, it looks like members are inclined to get advice on these from someone other than a homeopath or naturopath, with reasonably good success.

Acupuncture, meditation and exercise
6% of members had tried acupuncture, with 25% of these having some benefit. 2.3% had tried meditation techniques and all reported being able to reduce their medication doses. Exercise was helpful in 1.5%.

Other alternative treatments
8% of members reported trying other treatments. The most helpful of these included Tibetan medicine, osteopathy, reflexology, reiki, crystal healing, and experiencing a period of remission after child birth.

Degree of benefit from treatments
Of the treatments that helped, most reproted a reduction in symptoms. A smaller number (about 15%) reported a reduction in medication dosages, and only a few cases of total remission were documented (<3%).

or...

THE LANGUAGE OF INFLAMMATORY BOWEL DISEASE

What are the meanings of the names Enteritis; Colitis; Crohn's Disease; Ileitis; Crohn's Colitis; Ulcerative Proctitis?

All of these terms refer to inflammatory bowel disease (IBD). Inflammation of any part of the small intestine can be called 'enteritis' (from the Greek word 'enteron' meaning intestine). Inflammation of the colon is called 'colitis'. Crohn's Disease (named after the doctor who, with Doctors Ginsburg and Oppenheimer, first described the condition in 1932) is an ulcerating inflammation affecting the lining and deeper layers of the wall of the bowel- it can be in the ileum (small intestine) when it is sometimes called ileitis and/or it can be in the colon when it is called Crohn's Colitis. Ulcerative colitis is an ulcerating inflammation of the inner lining of the colon. Ulcerative proctitis is the name given to ulcerative colitis limited to the rectum.

abscess-a localised collection of pus which may form in the abdominal cavity or in the rectal area of persons with inflammatory bowel disease.

acute (illness)-short lived or sudden.

aetiology-cause.

5-aminosalicylic acid-a substance which reduces inflammation in colitis and may decrease the risk of relapse. The active ingredient in drugs such as Asacol® and Pentasa®.

anaemia-a lowered concentration of haemoglobin in the blood. Haemoglobin is the pigment which carries oxygen in the red cells.

anastomosis-the surgical joining of two ends of healthy bowel.

ankylosing spondylitis-a chronic inflammatory disease of the spine and adjacent joints which causes pain and stiffness in the spine, neck, hips, jaw and rib cage.

antigen-a substance, usually a protein, which is recognised as 'foreign' by a patient's body, so that antibodies are produced against it. Reaction between antigen and antibody may cause inflammation.

anus-the opening at the lower end of the gastrointestinal tract at the end of the rectum.

appendix-a thin blind-ending pouch of intestine attached to the caecum; that part of the colon situated in the right lower abdomen.

appliance-the combination of flange and bag worn over a stoma to collect bodily waste.

arthralgia-pains in the joints frequently experienced by persons with IBD.

arthritis-inflammation of a joint accompanied by pain, swelling and stiffness.

azathioprine-(Imuran®)-an immunosuppressant drug used to treat IBD.

bacteria-minute organisms, millions of which are normally present in the large intestine, but some of which can cause infection.

barium enema-a liquid suspension of barium sulphate which, when introduced into the rectum and colon via the anus, fills the bowel and adheres to the lining enabling X-ray pictures of the bowel to be taken.

barium meal-a liquid suspension of barium sulphate which, when drunk, enables X-ray pictures to be taken of the gullet and stomach. It can be followed through into the small intestine with further pictures.

biopsy-a small piece of tissue taken from the body for examination under the microscope by a pathologist. It helps in the diagnosis of IBD.

borborygmi-characteristic rumbling sounds in the bowel caused by the movement of air through the intestine. Everybody has them whether or not they have IBD.

bowel-another name for the intestines-the small bowel (duodenum, jejunum and ileum), and the large bowel (colon).

breath tests-simple painless tests which help detect lactose (milk sugar) intolerance, and other abnormalities of intestinal function.

bypass-a surgical re-routing of the intestine (see also resection).

caecum-the first 10-15 cms of the colon, situated in the right lower abdomen.

cholestyramine-(Questran®)-a drug taken to absorb excessive amounts of bile acid reaching the large intestine, and hence to treat certain forms of diarrhoea.

chronic (illness)-long lasting or slow.

clubbing-an abnormal curved shaping of the finger nails seen in some persons with IBD.

colectomy-surgical removal of the colon.

colestipol-(Colestid®)-a drug which binds bile salts to prevent diarrhoea.

colon-the large intestine; the function of the colon is to absorb water; it is about 1.5 metres long.

colonoscopy-an examination of the rectum and colon performed by passing a lighted flexible telescope (colonoscope) via the anus.

colostomy-a surgical operation in which the cut end of the colon is brought through an opening in the abdominal wall. Waste is then collected in a bag attached to the skin and fitted over the colon, which is fashioned into a spout.

constipation-infrequent passage of hard stools.

continent ileostomy-(or Kock ileostomy) the surgical creation of an ileal pouch inside the lower abdomen to collect waste after a colectomy for ulcerative colitis. The pouch is emptied regularly with a small tube inserted through an opening in the abdomen- no external bag is required.

corticosteroid-a type of hormone produced by the adrenal glands naturally. Prednisone and Prednisolone are synthetic corticosteroids used to dampen down inflammation.

cyclosporin-an immunosuppressant drug commonly used after kidney and other transplant operations, and occasionally used in IBD.

diarrhoea-excessive number of loose and watery stools.

dietitian-a specially trained individual who is qualified to asses nutritional status and work closely with the patient and doctor to ensure that an appropriate diet is being followed.

dilated-widened.

Dipentum®-see olsalazine.

distension-an uncomfortable swollen feeling in the abdomen often caused by excessive amounts of gas and fluid in the intestine.

diverticulosis-a very common condition of the lower colon of older people, characterised by a thickened muscle coating round the bowel, and multiple small out-pouchings (diverticula) which may become infected (diverticulitis) .

dysplasia-alterations in the cells of the colon lining seen on microscope examination of a biopsy, suggesting a possible increased risk of cancer developing subsequently.

elemental diet-a specially prepared liquid meal without residue, but containing all the necessary nutrients.

endoscopy-a general term for the examination of the inside of the body using a lighted telescope inserted through a natural body opening, e.g. colonoscopy and sigmoidoscopy via the anus, and gastroscopy via the mouth. The endoscopist is a specially trained physician or surgeon.

enema-a liquid inserted into the bowel via the anus, for diagnosis or treatment.

erythema nodosum-red, tender swellings occasionally seen on the shins and lower legs during a flare-up of IBD. They usually subside when the disease is in remission.

exacerbation-an aggravation of symptoms; an increase in the activity of the disease; a relapse.

faeces-motions; stools; wastes.

faecal fat test-a three or five day measurement of the amount of fat in the stools to determine if there is poor absorption of fat by the small intestine. This test is now rarely performed.

familial-a family characteristic.

febrile-running a fever, having a temperature.

ferritin-a blood test which measures the patient's iron reserves, and hence the need for iron treatment.

fissure-a crack or split in the skin, usually in the area of the anus.

fistula-an abnormal channel (false passage) between two loops of intestine, or between the intestine and another organ, or between the intestine and the skin.

flatus-an awareness of the passage of gas through the rectum, not necessarily in excessive amounts.

folic acid-one of the vitamins responsible for the formation of the red blood cells; folate deficiency may occur as a result of poor diet, or due to poor absorption by the small intestine. Folate deficiency due to sulphasalazine treatment is fairly rare but it can easily be corrected by taking oral supplements .

gastroenterologist-a physician or surgeon specially trained in the diagnosis and treatment of disorders of the intestine, including Crohn's disease and ulcerative colitis.

granulomata-microscopic collections of inflammatory cells seen in the bowel wall of patients with Crohn's disease when a pathologist examines a biopsy or an operation specimen.

gut-another word for bowel or intestine.

haemorrhoids-(piles)-swollen veins in the area of the anus which bleed easily. They may become painful.

heartburn-a burning pain usually felt in the chest and due to reflux of stomach acid and bile into the gullet. Common in the whole population.

hydrocortisone-a corticosteroid drug given intravenously or as a foam enema.

hyperalimentation-extra nutrition given into a vein.

I.B.D.-abbreviation for 'Inflammatory Bowel Disease'.

ileum-the lower part of the small intestine, which joins the colon at the ileocaecal valve.

ileoanal anastomosis-a surgical operation for ulcerative colitis where, after total colectomy, an internal pouch is made from the ileum and attached to the anus, thus preserving continence and allowing evacuation in the normal manner. (This operation is also known as the 'reservoir' or Parks operation) .

ileostomy-a surgical operation in which the cut end of the ileum is brought through an opening in the abdominal wall. Waste is then collected in a bag attached to the skin and fitted over the ileum, which is fashioned into a spout.

immunology-the study of the body's immune system.

Imuran®-see azathioprine.

incontinence-inability to retain stools or urine.

iritis-painful inflammation of the eyes sometimes occurring in IBD.

irritable bowel syndrome-irritable colon-a common condition caused by altered motility of the bowels. It produces diarrhoea or constipation and abdominal discomfort. Such symptoms can be troublesome in patients with IBD even when the inflammation is quiescent.

intravenous pyelogram-(IVP) an X-ray examination of the kidneys, ureters and bladder.

-itis-indicates inflammation e.g. colitis is inflammation of the colon; proctitis is inflammation of the rectum; ileitis is inflammation of the ileum.

lactase-is the enzyme which enables the small intestine to digest lactose.

lactose-milk sugar.

lactose intolerance-a common and harmless disorder producing abdominal discomfort, diarrhoea and gas after the ingestion of milk or milk products. This may need treatment with a milk-free diet.

lesion-a term used by doctors to describe any structural abnormality.

leucocytosis-an increased number of white cells in the blood.

leucopenia-a decrease in the number of white cells in the blood.

loperamide-(Imodium®, Dicap®)-an anti-diarrhoeal drug which slows the contraction of muscle in the gut.

6-mercaptopurine-(6-MP)-an immunosuppressant drug closely related to azathioprine, used for reducing flare-ups of IBD.

mesalazine-a coated formulation of the drug 5-amino-salicylic acid to deliver the drug to the ileum and colon (e.g. Asacol®, Pentasa®).

Methotrexate-(Ledertrexate®, Methoblastin®)-an immunosuppressant drug with some use in IBD which is not responding to other drugs.

metronidazole-(Flagyl®)-an antibiotic which may be helpful in treating anal inflammation in IBD.

mucus-a white slimy lubricant produced by the intestines. It is found in excess in the stools of patients with colitis.

nasogastric tube-a thin flexible plastic tube passed through the nose into the stomach.

obstruction-a blockage of the small or large intestine, often due to narrowing of one part of it.

occult blood-non-visible blood in the stool, which can easily be detected by a simple laboratory test.

oedema-accumulation of excessive amounts of fluid in the tissues resulting in swelling.

olsalazine-(Dipentum®)-two 5-ASA molecules joined together chemically so they can be broken down by bacteria in the colon to release the 5-ASA.

ostomy-an artificial opening of the intestine onto the wall of the abdomen (see stoma).

pathologist-a doctor who is a specialist in the examination of tissues under the microscope.

Pentasa®-preparation of the drug 5-aminosalycylic acid.

perforation-an abnormal opening in the bowel wall which causes the contents of the bowel to spill into the normally sterile abdominal cavity.

perianal-the area round the anal opening.

peritoneum-the membrane lining the inside of the abdominal cavity.

peritonitis-inflammation of the peritoneum often due to a perforation.

"pouch" operation-(ileoanal anastomosis)-an operation involving the removal of diseased colon and rectum and formation of an internal pouch using a length of ileum which is attached directly to the anus. Performed commonly in young people with ulcerative colitis.

pouchitis-inflammation of the pouch. The exact cause in unknown.

prednisolone/prednisone-are drugs of the corticosteroid group used to reduce inflammation in IBD. It can be taken as tablets, intravenously by injection, or through the rectum as an enema or suppository.

proctocolectomy-removal by surgical operation of the colon and rectum. The patient is left with an ileostomy.

prognosis-what might happen in the future (to the progress of the disease).

prophylactic therapy-preventive treatment.

Purinethol®-see 6-mercaptopurine.

pyoderma gangrenosum-a type of chronic skin ulceration which sometimes occurs on the extremities of persons with IBD.

radiologist-a doctor who specialises in X-ray, ultra-sound and similar examinations.

recurrence/relapse-return of the disease activity.

remission-a lessening of symptoms of the disease and a return to good health.

resection-the surgical removal of a diseased part of the intestine.

reservoir-an internal pouch created from loops of small intestine.

rheumatologist-a medically qualified doctor with special training in the diagnosis and treatment of patients with diseases of the joints and muscles.

sigmoidoscopy-the passing of a short lighted telescope through the anus to inspect the lining (mucosa) of the rectum and the lower colon.

small bowel enema-barium sulphate is introduced into the small intestine through a tube. The barium sulphate adheres to the lining of the small bowel allowing x-ray pictures to be taken.

small intestine-that section of the gastrointestinal tract which digests food and absorbs nutrients after they have passed through the stomach.

spastic colon-see irritable bowel syndrome-it is not an inflammatory bowel disease although some of the symptoms are similar.

spastic colitis-see irritable bowel syndrome and spastic colon.

steatorrhoea-excessive amounts of fat in the stool due to poor absorption by the small intestine.

stoma-a surgically constructed opening of the intestine onto the abdominal wall over which a bag can be fitted and sealed to the skin.

stool-bowel motion, faeces.

stricture-an irreversible narrowing of the gut due to scarring

sulphasalazine-(Salazopyrin®, Colizine®)-a drug which combines 5-aminosalicylic acid with a sulphonamide derivative. It is used to treat flare-ups and to maintain remission in IBD.

suppository-a bullet-shaped plug containing a drug for insertion into the rectum. For use where medication is required only in the last 8-15cm of colorectum.

tenesmus-a persistent urge to empty the bowel usually caused by inflammation of the rectum.

terminal ileum-the lowest end of the small intestine before it joins the large intestine.

toxic megacolon-dilatation of the colon which may lead to perforation, usually in a very severe attack of ulcerative colitis, or Crohn's colitis. Urgent surgery is almost always performed.

total parenteral nutrition-intravenous infusion of all the patient's requirements of nutrients through a fine tube (catheter) placed in a large vein.

upper G.l. series-an American term for a barium meal and follow through X-ray examination .

viruses-microorganisms which can replicate only within other cells. They do not usually respond to antibiotics.

So you never thought there was anything funny about having IBD? Especially when you were first diagnosed. However, there are some people who have a devious sense of humour that extends to bowel habits, ostomies, Crohn's disease and colitis. Here are several internet sites that may cause you to smile about things you probably thought you never would.

IBD Humour Page

Over three pages of anecdotes, stories and observations about what its like to live with IBD. Some funny, some to make you think "I've done that", and others that just make you feel you're not alone.

A mother with CD says, "Never underestimate children, sometimes you think they are never paying attention but..". One day her 7 year old daughter was playing action figures with her 2 and a half year old son. She said, 'Lets pretend my guy is going shopping at the grocery store.' Her little guy said, 'OK, let's pretend my guy has diarrhoea!' as though it were a part of every day happenings!!!"

Ostomy Humour

More of the same but with an ostomy angle.

After putting off my ileostomy surgery for ten years. (Yeah, I know, not too smart.) I finally was sick enough and no longer had a choice. When I came home, my wife was trying to put me at ease over the flack I was getting for missing too much time at work. She turned to me and said, referring to my lack of an anus, "It's too bad your boss didn't have that surgery, he would have disappeared completely". Now how could you not love a woman like that!

You Know You Have IBD When. . .

A list that just seems to get longer and longer. You can even submit your own entry by email to billr@uism.bu.edu.

Y K Y H IBD W. . . your pharmacist says, "I see you more than I see my husband!"

The Sh*t List

*Warning* This page contains a list of various types of sh*t. So if you don't think faeces can be funny don't go to this web page. However, here's a clue. The classifications defined include: Wet Cheeks, Liquid, Bombshell, Turbo-charger, and Ghost. Don't say you weren't warned.

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