Archive - Notes From Public Meetings
Surgey and Staples | Cause and Cure for Crohn's? | Paediatric IBD and Diet | CCSG Time Line | IBD and Health Insurance in NZ | Surgical Options for Colitis | Transcendental Meditation and IBD | Health Advocates Trust | Notes on IBD and Diet | Stress Management with Iris Barrow | Acupuncture and IBD | Dietary Delights | Drugs and IBD | Medical Herbalist Talks about IBD | Notes from the 1998 AGM | Dr Mark Lane Discusses IBD | Facts & Fiction about Diet and IBD | General Practitioners and IBD - are you OK? | NZ TV celebrity Jim Hickey talks about his Crohn's disease | Diagnosis of Crohn's Disease & Ulcerative Colitis | Discussion Group: Informal and Friendly |
Surgery and Staples...
(Meeting held on June 13, 1993)
For those who attended the last public meeting of CCSG reading of Mich Neills talk about the surgical procedures used on Crohn's disease (CD) and ulcerative colitis (UC) will no doubt bring back memories of the slides showing the insides of the human intestine and that rather large "bowel stapling device". I never did figure out how it actually worked and I want to think even less about how they got those photos!
For most IBD sufferers surgery is the last thing they want.
I remember at 13 being terrified of having an IV drip let alone
going under the knife. But for those who do end up requiring
a more invasive approach to treatment it was an opportunity to
get a look at what happens when the anaesthetic goes in and various
bits and pieces come out.
Starting with the history of bowel surgery Mr Neill described
how far we have come from the crude anaesthetic and surgical
techniques of the first ileostomy in the early part of this century.
Today is the era of transplant surgery and the bowel is no exception
(see later for details).
The majority of Mr Neills talk focussed on the techniques used in patients with UC. This is because of the fewer complications associated with this disease compared with CD. In addition, the localised nature of UC means that surgery removing the entire colon effectively removes the disease. Therefore techniques utilising small bowel modifications (eg J-pouch and W-pouch) can be very successful without a major risk of recurrence. Where there is recurrence it is most likely to be due to misdiagnosis of CD as UC. CD, on the other hand, can occur anywhere along the gastrointestinal tract and therefore surgical approaches to treatment are always more conservative with pouch operations never considered.
As a patient with some experience of bowel surgery I was fascinated by the descriptions Mr Neill gave and his thoughts about the rapid advances in gastrointestinal (GI) surgery. And while I may be able to look with interest at slides of resected bowel I'm sure there were more in the audience like me who hope that is as close as I ever get to the famed W-pouch.
Thanks to Mich Neill for a most interesting presentation.
Small Bowel Transplants
While this topic was mentioned briefly at Mr Neill's talk the latest edition of British National Association for Colitis and Crohn's Disease newsletter contains an interesting article updating the state of this interesting new development in GI surgery.
"The first small bowel transplant [in the United Kingdom] was carried out last December by Professor Sir Roy Calne, FRS, and Mr Stephen Pollard at Addenbrooke's Hospital, Cambridge. Operations have already been performed at a handful of centres worldwide, including Pittsburgh (USA), London Ontario (Canada), Stockholm and Paris.
Three of the Pittsburgh patients were CD sufferers, and the ten patients treated at Pittsburgh are all still alive; they had all been on TPN [total parenteral nutrition] for 3-10 years."
What is the Cause and is there a Cure for Crohn's
Disease?
"Many of my patients ask me about the cause of Crohn's disease and if there is a chance of a cure on the horizon. As to the cause, the simple answer is that we do not know. As to the chance of cure the simple answer is not yet. But it is far more complicated than this and real advances have been made recently which give cause for considerable encouragement. Let me try to explain some of these.
"Firstly, we now know more about the likely causes of Crohn's disease than ever before. Recent research suggests that the problem may be an abnormal reaction of the bowel wall to bacteria or parts of bacteria. This abnormal reaction is determined by the genetic makeup of the patient. The importance of this new insight into the cause of Crohn's disease is that it leads to the possibility of screening for genetic markers. Knowledge about the genetic makeup may give the doctor a better idea as to how the disease is likely to behave in an individual in the future and may give insight as to the best approach to treatment.
"Recent research has led to many discoveries about inflammation in the body. So rapid and numerous are the advances that a new medical language (the language of molecular biology) has developed around them. As each month passes the concepts of how inflammation occurs and how it can be controlled increase. Let me try to unravel some of these concepts for you. In the simplest terms, bacteria react within the wall of the bowel with the result that a whole range of molecules are produced. When produced in excess some of these molecules may cause severe and continuing inflammation - such as is seen in the bowel wall of patients with Crohn's disease. Scientists are working on two ways of cutting down the quantity of these molecules and thereby reducing the inflammation they cause. One way being tried is to suppress the activity of the cells that produce harmful molecules by drugs which are similar to or the same as those used to suppress the immune system in patients after organ transplantation. The other way is to try to capture or neutralise the molecules themselves by the use of antibodies specially developed for the purpose. Some of the early results from clinical trials look quite encouraging although the new antibodies are prohibitively expensive at the present time. A few months ago the results of an important study appeared in the New England Journal of Medicine. In a controlled clinical trial capsules of fish oil (9 capsules per day) or similar looking but inactive capsules were given to patients soon after they had been operated on for Crohn's disease (See CCSG News - Winter 1996).
"The theory behind the use of fish oil was the knowledge of the fact that the 3-omega-fatty acids within it had been shown to neutralise some of the molecules that are present in inflamed tissues."
The results showed that the patients who received fish oil capsules had fewer recurrences of Crohn's disease in the months and years following surgery than those who had received the inactive capsules. Remember this is only one study and others must be done before we get too excited about the routine use of fish oil in patients with Crohn's disease. It is not a cure for the disease but it would appear to be an important new advance.
What is my judgment about the future? Over the next 10 years or so new treatments for Crohn's disease will appear and surgery will be required less frequently and the quality of life for many patients will improve measurably. Do I think there will be a cure for the disease within that sort of time frame? Well that is another matter.
Graham L Hill, MD
(Professor of Surgery and Patron of the CCSG Inc.)
Paediatric IBD and Diet
(Meeting held on November 18, 1996)
Our speaker at the final public meeting of the CCSG was Dr Simon Chin, a paediatric gastroenterologist. Dr Chin trained in NZ then worked overseas, but 2 years ago returned to work at Starship Children's Hospital as well as in private practice. In general his talk was about diet in inflammatory bowel disease but with some details about how this relates specifically to children. He spoke to about 70 CCSG members on this topic.
In 30% of people with IBD, disease onset is experienced at under 15 years of age, and this has a dramatic effect on growth and nutrition, such as weight loss, reduced height and a delay in puberty. Up to 30% of Crohn's and 15% of colitis patients have associated weight loss as a result of their disease. Initially IBD in children is often only present with very subtle symptoms.
Many factors have been associated with IBD. Some of these include breastfeeding, sugar, dietary fibre and the 'Western' diet. An allergy to cows milk was also once thought to lead to colitis but this is no longer thought to be the case. In fact Dr Chin stated that there is no evidence to suggest a lactose-free diet will be of any use UNLESS you have been shown to have an allergy, since dairy products are an important source of protein and calcium.
Dr Chin also discussed assessment of young people with IBD, specifically the dietary risks imposed by IBD such as malabsorption of nutrients and subsequent deficiencies as well as the risks of dietary conditions such as anorexia. Dietary modifications used to treat these problems include increased calorific intake (up to 150% of normal requirements) and the use of restricted or elemental diets. Enteral feeding (via a tube into the stomach) and total parenteral nutrition are also used, but by a small number of patients only.
The main "take home" messages from Dr Chin were:
1. Dietary advice is given only on an individual basis.
2. A high energy balanced diet is best (carbohydrate, protein and fat).
3. Vitamin and mineral supplements are only needed if you have been shown to have a deficiency.
If you would like more information about Dr Chin's talk contact the CCSG for a copy of the full notes from the meeting.
CCSG Time Line: 1987 -
Can you remember the time you
were first told you had Crohn's disease and didn't have a clue
what the doctor was talking about? Does your specialist explain
your ulcerative colitis in terms that you can't understand? Have
you ever thought you were the only one in the world with an inflammatory
bowel disease (IBD)? If you answered "Yes" to any of
these questions you can probably appreciate the motivation that
Glenda Cartwright had to start a support group for people with
an IBD.
In 1987 a group of five IBD sufferers got together to form the first "committee" of the CCSG. Glenda, Shirley, Jane, Dennis and Stuart met at Glenda's home periodically and discussed (chatted mainly) about what we had all been through and what a support group could have done to help us. Having all been in hospital together we could empathise with each others experiences.
The first CCSG Public Meeting was held on May 3rd, 1987 and it was at this meeting that the basic structure of the group, then known as "The Inflammatory Bowel Disease Support Group" was established. Professor Graham Hill from Auckland Hospital has supported Glenda in the formation of the CCSG from the very beginning and therefore it was appropriate that he was asked to be Patron of the group in 1988.
During 1988 and 1989 funding from The Lotteries Board and Sutherland Trust allowed the CCSG to be firmly established with some purchases of office equipment and establishment of the library. Printing of information leaflets (No.s 1-7) during this time was sponsored by Pharmacia, as it still is today.
As recognition of her central role in the CCSG organisation, the Churchill Trust awarded Glenda Cartwright a grant-in-aid so she and husband Bill could travel to an international conference on Crohn's disease and ulcerative colitis in 1988. This experience contributed to the contacts we now have with other IBD organisations around the world, such as the Crohn's and Colitis Federation of America (CCFA), the Crohn's and Colitis Federation of Canada (CCFC), the Australian Crohn's and Colitis Association (ACCA), and the National Association for Colitis and Crohn's Disease (NACC) in the UK. The CCSG became an incorporated society in October 1989, and began to function pretty much as it does today.
Over the last 2 or 3 years, substantial funding from Lotteries Welfare and the ASB Charitable Trust, the continued support of Pharmacia & Upjohn and the production of the 'Living with IBD' video by Pharmaco (NZ) Ltd has resulted in CCSG membership numbers increasing from 70 to 320. However, the group is still run by a small group of dedicated volunteers, most of whom suffer from IBD and also work full-time. The CCSG and its committee aims to give members the support and information they need to help them cope with IBD, but everyone is different. Therefore, any realistic suggestions as to things the group can do in the future are always appreciated.
Currently, plans are underway to expand the CCSG Visiting Programme, with the financial and logistical support of Pharmaco. This will hopefully see more sufferers benefit from the experiences of others in similar situations and the information that the CCSG can provide. In addition, the library service continues to expand rapidly with many new titles becoming available over the last year. All the books are sourced from overseas and we are always looking out for new ones to add to the library.
Another plan is to establish a research fund in memory of Crohn's disease sufferer Janice May, who died along with 3 members of her family in an horrific car accident on Christmas eve last year. Initial funds were donated by Janice's family, friends and work-mates, in response to a request for donations to the CCSG in lieu of flowers. We also plan to apply for funding specifically for this project. In addition, if anyone would like to make a donation to the research fund please let us know. While medical research may be expensive, even a few thousand dollars from the CCSG can be put towards a specific project that may just generate some important results for IBD sufferers.
We hope that the CCSG will continue to make a difference to the lives of patients with IBD, and their families and friends, despite it's limited resources and the voluntary nature of it's work.
IBD and Health Insurance in NZ
Do you ask yourself this question every time you pick up your monthly supply of drugs and hand over $50? Yes? Well, we decided to ring around a few of the major health insurers and see what they said. Most were quite helpful but UniMed and National Mutual set their salespeople on us despite being asked not to. The purpose of this article is not to make a recommendation about which company or policy is best. Our intention was to find out what a person with IBD could expect to be up against when seeking medical insurance. After all, it's probably the IBD that you most want covered.
Each of the five companies were asked for their policy on covering existing medical conditions. The following is an overview of their responses.
Aetna - pre-existing conditions covered on a case by case basis. However, once refused the condition will never be covered.
National Mutual Health - existing conditions excluded except if specifically accepted at policy commencement (case by case assessment).
Southern Cross Healthcare - not covered for the first three years in a specific plan, then normal benefits apply (depending on policy type). IBD not speciffically excluded under the rules therefore would be covered after the stand down period.
State Insurance - pre-existing condition not covered unless accepted at time of policy commencement (extra premium may apply).
UniMed - existing conditions, if they qualify at the time the policy is taken out, are accepted after 3 years continuous membership. (Qualification decided on a case by case basis).
Of course there is a huge range of policies and premiums to go with these companies. Also keep in mind that sometimes these companies run "specials" that may include the elimination of stand down periods and therefore cover existing conditions immediately. Company policies may also offer this benefit.
State Insurance and National Mutual are only recent arrivals in the medical insurance industry while players such as Aetna and Southern Cross have been around for ages. Southern Cross Healthcare has the largest share of the market, accounting for approximately 65% of medical insurance in NZ.
Southern Cross and UniMed are "not-for-profit" organisations.
Surgical Options for Ulcerative Colitis
(Meeting held on June 14, 1995)
Professor Hill began his talk to the group with an introduction
to the subject of Inflammatory Bowel Disease (IBD). CD = Crohn's
disease, UC = ulcerative colitis.
Generally...
Inflammation of the colon = colitis
Inflammation of colon in CD = Crohn's colitis
The difference between CD and UC is that UC is restricted to the colon, whereas CD can occur at any place in the digestive tract, from the mouth to the anus. This means that UC can be cured by total removal of the colon and rectum, and closing the anus. The patient is left with a permanent ileostomy but no colitis. Such a cure is impossible for CD because all this can be done only to find the disease has recurred elsewhere in the bowel.
The radical surgery described above was first performed in Toronto in 1948 and is now the standard operation in patients with acute colitis on high doses of prednisone. In cases where the rectum was left in and the bowel later rejoined the results were almost always unsuccessful. Now this is hardly ever done in surgery for colitis.
A surgical option other than a permanent ileostomy was available only if the anal sphincter was left in. This allowed for the development of an internal pouch. After removal of all the rectum and the colon, the pouch is constructed of healthy small bowel and then joined directly onto the anus.
The first pouch operation in an adult was attempted in England in 1978. The pouch construction from remaining healthy bowel was based on another type of surgery in which new stomachs were being constructed. In Auckland, Professor Hill performed the first pouch operation on a colitis patient in the early 1980s but this was not successful. Now, with some modifications to the procedure as was described to the group in a previous meeting by Misch Neill (e.g. J-, H- and W-pouch), better success has been achieved and there has now been over 200 of these operations carried out at Auckland Hospital. While surgery is not necessary in all colitis patients, in those that do need it nearly everyone has a pouch.
The operation itself is a major procedure, and 6 to 12 months is required to recover completely. This is mainly due to the two-step nature of the surgery. First the colon and rectum are removed, and during the same operation the pouch is formed and attached to the anus. However, instead of just reconnecting all the plumbing right then and there, a temporary ileostomy is constructed to divert normal waste into an appliance which the patient wears on the abdomen. The pouch is therefore allowed to heal without the added aggravation of having to deal with food. After 3 months recovery the ileostomy is closed ("a small procedure but can be tricky") and the contents of the bowel are redirected into the pouch. At Auckland Hospital pouch surgery always includes the construction of a temporary ileostomy. The success rate is better and the complications reduced.
Pouch formation surgery is never done in patients diagnosed with CD. Sometimes it can be unclear whether a patient has CD or UC and if there is any doubt it is not done. If a pouch is created and then the patient gets further IBD symptoms, it may be that they actually have CD. In this fuzzy area, diagnosis is more an art than a science, and therefore sometimes mistakes are made. If there are only minor symptoms then patients are treated medically, but in some cases it is best that the pouch is removed altogether and a permanent ileostomy "installed".
Generally, hospital stays for the first surgery are in the region of 3-4 weeks and then 2 months convalescence. In acute cases the first surgery may be emergency and so another operation is required to form the pouch. After that the reversal of the ileostomy may require a one week hospital stay. Full recovery is usually made after another 4-6 months.
Bowel motions with a pouch are nothing like "normal". The patient may have 5-6 motions a day, but often they are grouped. Maybe 3 in the morning, 1 during the day and 2 in the evening.
The success rate of the pouch operation is about 90%. 80% of people report an excellent quality-of-life, 10% are worse off than before the procedure, and 10% are in between.
Complications are usually minor. There can be some inflammation of the pouch after surgery but this "pouch-itis" is usually due to a bacterial build up and can be easily treated with antibiotics. This would seem to indicate a general susceptibility of IBD sufferers to bowel bacteria and therefore may point to a genetic factor in the occurrence if IBD. Otherwise the risks of this procedure are the same as those for other types of surgery.
The impact on family can be greater than on the patient themselves. Quite clearly there is a lot of stress associated with the surgery and some deal of adjusting to do afterwards. As for sex, patients often report an improved sex life after recovery. Quite often the patient is so sick beforehand that they were not interested in sex. However, something to keep in mind is that for about 0.5% of male patients, surgery to remove the rectum results in impotence, (there are a lot of very small nerves in that area). In younger patients impotence is less common. For women, pregnancy and childbirth is possible with a pouch although a caesarean section is usually recommended to avoid anal sphincter problems or internal damage to the pouch.
Sport and travel are no problem for "pouch people". Travel through the tropics may be a bit more daunting and pouch-itis is a possibility but otherwise it is quite safe. Obviously getting advice from your surgeon before travelling is a good idea particularly if you are going somewhere that they don't speak English.
Transcendental Meditation (TM) and IBD
(Meeting held on October 11, 1995)
The presentation given by Martin Jelley at the last public meeting was very well received by the people who attended. Martin covered the basics of TM and the potential benefits to be had from practising it regularly.
TM is not a belief or a method of worship. In fact you don't "follow" anything. It's a simple mental technique that should be practised for 15-20 minutes each day to get the maximum benefit. Approximately 37,000 NZers are "TMers" and given the scientific research that shows it's benefits for health and aptitude it's no wonder that some doctors even prescribe it for their patients.
Stress, it was reported, stops us from reaching our full potential. TM can dissolve the stress and expand the conscious thinking capacity of the mind. Through the removal of all stress we can use 100% of our mental potential.
With TM you first notice reduced stress and then increased clarity of thinking. John Ballard, CCSG committee member and chartered accountant, endorses this view. After having colitis for 10 years John was faced with the prospect of surgery. At this time in his life he took up TM after initially dismissing it as of little use. Two and a half years later John has never had to have surgery and has reduced the dosages of the drugs he was taking for his colitis.
The scientific community has taken the claims of the TM technique
seriously and there have been many studies looking at the effect
of TM on various aspects of our health and ability to perform
mental and academic tasks. All the following claims have been
supported by scientific research.
Health
TM allows us to achieve a state of rest and relaxation greater than that of sleep. Beginners often notice increased energy levels almost immediately after starting TM as well as better and longer sleep.
People who practise TM get sick less often. In fact, studies demonstrate that TM "users" are admitted to hospital less often. There was a 50% lower incidence of hospitalisation for intestinal conditions compared to those who were not practising TM.
Believe it or not your body also ages more slowly if you practice TM. Long-term TM users were "physiologically" 12 years younger than their non-user counterparts!
It results in reduced risk of heart attack, reduced cholesterol
levels and reduced blood pressure. Also reduced were symptoms
of asthma sufferers.
Social Behaviour (Relationships)
The resultant reduction in stress levels from practising TM allows users to "be more appreciative of our environment thereby increasing enjoyment and fulfilment in our lives".
TM was better at reducing anxiety than any other form of meditation.
TM users had improved self esteem, and self confidence.
TM users exhibit reduced use of nicotine, caffeine, alcohol and prescription drugs.
TM users report increased job satisfaction and improved relationships
at work.
Cost (including GST)
Adult: $990; Family (2 adults, any children under 18): $743;Full-time student: $585. Payments can be spread over several months.
Although the cost is "up there", most people in the audience were very impressed. More information about TM is available from the CCSG and several people were keen to join up there and then. John Ballard's personal endorsement certainly added weight to the claimed benefits to be had from TM.
Health Advocates Trust
(Meeting held on April 26, 1995)
A very successful and informative evening was held on Wednesday, April 26 when Sheryl Wrigley spoke to our members about the "Health Advocates Trust". This organisation was set up in light of the report from the Cartwright inquiry on cervical cancer which stated that there was a real need for a free, independent and confidential service to clients of health and disability services.
The "Health Advocates Trust" operates in the Auckland region and the seven advocates employed have a role in working with people who feel they need help to get what they are entitled to from the health system. Mostly their role is one of empowerment; "talking about your rights, giving you all the information and helping you to get the solution you want".
A short video was shown giving examples of the range of situations that can arise and ways in which patient advocates can help. These include helping you to communicate effectively with your doctor, lodging a complaint about inadequate service and informing you of your rights under law. For example, you are entitled to free copies of all your medical notes held by hospitals, specialists and your GP. In fact, most of the requests for help to the advocates regard situations where patients feel they have been treated without consideration or that their rights have been breached.
Health and Disability Commissioner
One important point that was raised at this meeting was the appointment of Robyn Stent, the new Commissioner for Health and Disabilities. Her functions initially include the setting up of a consumer advocacy service, the establishment of a code of consumer rights, and to put in place procedures for the independent investigation and resolution of complaints about breaches of the code. At this time hospitals are guided by their own codes of patient rights. Although copies of these are not given freely, we have been able to obtain both the Auckland and Waitakere Area Health Board pamphlets and if you want one we can send you a copy. We are still waiting for the code of patient rights from Middlemore Hospital. More general information can be obtained by contacting the office of the Commissioner directly (see below).
The Health and Disability Commissioner can be contacted by telephone on (04) 495-6669, or by mail at100 Molesworth Street, PO Box 12299, Wellington. There is also a web page called HDC which might be worth a visit.
Notes on IBD and Diet
(Meeting held on March 25, 1994)
The second public meeting organised by the 93/94 CCSG committee was run as a panel discussion and directed by questions from the audience present. Professor Cliff Tasman-Jones (Prof T-J), one of NZ's most prominent gastroenterologists, and Kerry Maher (KM), a dietitian at Auckland Hospital, were the invited guests and Stuart Ryan (SNR) provided the patients perspective. A good turn out of members (despite the short notice) gathered on that cold Friday night and what follows is an abridged version of what was discussed.
On...The changing incidence of Crohn's disease and ulcerative colitis.
Prof T-J: When I trained as a doctor (in the UK), Crohn's disease (CD) was very rare while ulcerative colitis (UC) was more common. There have been a lot of changes in understanding of these diseases, for example, the first (and we now know incorrect) definition of CD said that it was found only at the terminal end of the small bowel hence it's name - regional ileitis; and that it was a variant of UC. In 1962 when a came to NZ I was told there was no CD in NZ and that it was found only in the northern hemisphere as it was probably due to a allergy to pine pollen. CD is now more common in NZ than UC, a situation that was the reverse only 15 years ago. The rate of incidence is about 1 in 1200 for UC and slightly more for Crohn's.
IBDs are seen mostly in western Caucasians (white Europeans, British, Americans, Australians and New Zealanders). It is very uncommon in Polynesians and occurs only occasionally in the people of Asia and India. An example of this is that in Fiji it is Fijian Indians that get CD and not Fijian Fijians! The incidence in black Americans is also well below that in other Americans.
On...Diet
KM: When the patient is well there is no need for dietary intervention as long as the patient is eating well. We don't just look at treating the bowel but at treating the person as a whole, looking at their lifestyle, work etc. Diet is only to treat the symptoms of the disease and not the disease itself.
On...Food
KM: Food doesn't cause CD/UC and it doesn't cure it either. The bowel likes food and dries up if no food goes through. Even with parenteral nutrition (intravenous feeding) we try to get food through to keep the bowel healthy. Prof T-J: There are lots of different substances in food some of which may be important in maintaining health eg antioxidants to prevent oxygen free-radical damage. Diversity of foods is more important than the foods themselves so you make sure you get things like flavenoids, isoquinolones, vitamins and trace elements. KM: I would recommend a vitamin/mineral supplement for patients with bowel resection (some bowel removed) for protective rather than therapeutic effects. Myadec® is good and cheap too. However, be careful with herbal tonics/remedies because these things contain drugs and when we take them we are taking a pharmacological dose rather than a dietary dose. A dietary dose may be very small yet when we take herbal remedies we may be ingesting a much larger amount. This is not necessarily a good thing. Just because a little is good does not mean a lot is better.
KM: Some foods will create more wind than others but quite often it is caused by eating habits rather than the food consumed. For example, drinking while eating, eating with your mouth open, drinking through a straw. SNR: So neither of our guests would say that certain particular foods cause problems for IBD sufferers. In fact we are all individual and what we find we can tolerate is mostly through trial and error. There is no consistent trend with any type of food although I do personally know people who cannot eat dairy foods without getting worse symptoms. On the other hand I never met a dairy food I didn't like.
On...Stress
Prof T-J: There is no proof that stress causes CD or UC. Maybe the background anxiety of having a disease means that when you get stressed everything seems worse.
On...Genetics
Prof T-J: There is a certain gene type in people that makes them more likely to get CD. There may also be environmental factors that result in the "clustering" of disease in families. Crohn's disease also occurs in isolated people and this is the most common pattern.
On...Causes
Prof T-J: As well as genetics there are other theories about the origin and pathogenesis of IBDs. Last year it was suggested by doctors at the Royal Free Hospital in London that CD was caused by a virus similar to the measles virus. Multiple things may be responsible for the inflammation. Recently the interrupted supply of blood to the bowel has been shown to result in an antibody/antigen reaction in the area of bowel affected. This leads to the granulomas as seen in the bowel tissue under microscopy.
On...Cures
Prof T-J: We would rather find something to prevent it. A couple of weeks ago an acute case of CD was cured using a drug called 2-a-interferon. However one of the side effects of this is depression. 2-a-interferon is a natural chemical which is released in response to the common flu virus. As a result you get similar symptoms, along with depression in some patients.
The other thing to remember is that CD can burn out. But remember just because you have had no symptoms for a while does not mean they've gone forever.
On...Associated conditions
Prof T-J: Crohn's arthritis is different from other arthritis you've heard about. It can recur and treatment is difficult. It occurs in about 10% of CD sufferers. Salazopyrine is used in mild cases (initially it was an anti-arthritis drug anyway) and then if it does not respond or is worse, other anti-inflammatory drugs can be used.
Blindness associated with CD is very, very, very rare and is caused by macular degeneration.
On...Drugs
Prof T-J: There are some new drugs currently being trialed for use in CD and UC patients. These include: interleukin-2 and TNF (tumour necrosis factor). There have been substantial trials already on other new drugs such as cyclosporin, methotrexate and an older one azothioprine. KM: There is a lot of research going on worldwide and at Auckland Hospital's, Dept of Surgery work is being done on growth hormone treatment of these diseases.
SNR: Omega-3-fatty acids are also being looked at as a treatment of CD. KM: This is in it's infancy and it is being looked at as a drug rather than a dietary treatment. All reports of success are as yet anecdotal.
On...Bowel Transplants
Prof T-J: Transplants of bowel remain very difficult and not
very successful as yet. KM: There are lots of treatments for
patients with the large bowel and only a little small bowel and
this means that transplants may not be necessary in the vast
majority of cases or not needed at all.
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Stress Management
(Meeting held on November 6, 1994)
Stress often starts off as being mental, BUT about 80% of diseases are related to stress in some way. Stress is different from pressure, in that stress is experienced internally whereas pressure is experienced externally.
Stress can result from excessive pressure, but can also result from the way we think and our perception of things, eg. worrying, anxiety, negative anticipation, low self esteem, perfectionism. Iris defined a perfectionist as someone who has an unrealistic expectation of themself, who constantly tries to prove themself to themself but doesn't ever measure up. She also said it is important not to equate performance with self worth, as they are completely separate things. It is important to focus on what we can do, rather than what we can't do. Also, your only requirement is to meet the need of the current moment ("Today is the tomorrow you worried about yesterday!").
Hints for dealing with stress:
- if you can't change a problem, change your attitude to it; eg. turn a worry into a problem that needs to be solved
- always take action, don't get anxious
Four key points are essential if we are to keep stress under control:
1. balance (nature balances us to keep us alive, eg. get sick so we slow down)
2. daily exercise
3. daily relaxation
4. positive thinking
If you feel stress building up, Iris suggests performing a 'tension breaker'. To do this, put your hand on your diaphram (just under the ribs) so that you can feel yourself breathing deeply, then close your eyes and inhale slowly over 10 seconds and exhale slowing over another 10 seconds. While you are breathing in, imagine yourself breathing in fresh 'good' air, then imagine yourself exhaling dark 'bad' air, and ridding yourself of tension.
With respect to exercise, this does not have to be anything strenuous. Quite often when we feel physically tired we are really just mentally exhausted. Therefore, what is best to do is not to lie around but to get moving and do some gentle exercise. Its amazing how much better this will make you feel.
Iris described stress as a continuum, with 'good stress' at one end and 'distress' at the other. Somewhere in the middle is the 'stress threshold'. Stress that occurs at a level below the threshold is 'good stress', and is often associated with the release of endorphins. When endorphins are released you will feel more motivated, have a higher energy level, be more mentally alert, think more creatively, etc.
Some keys to releasing endorphins are:
- participating in enjoyable activities such as hobbies and interests
- exercise (about 30 min of steady/heavy exercise releases endorphins that last for up to 24h)
- doing things that give us emotional satisfaction and fulfilment
- playing and having fun (and this doesn't just mean children!)
- laughter
- relaxation
- positive thinking
Acupuncture and IBD
At the 1996 AGM Alex Chan gave an interesting talk about Chinese medicine and this unique approach to the treatment of IBD. Several people in the audience, who use acupuncture regularly, had personal experiences to contribute also. The basis of Chinese medicine is not diagnosis, but rather the differentiation of syndromes which are determined by the combination of signs and symptoms. The ancient causes of illness are the weather, emotions, lifestyle and accidents. If "wind" is the cause of the syndrome then the treatment is to "avoid wind". For example acupuncture points are used and herbs taken that both expel wind.
Syndromes are described with a combination of four paired parameters. These are: superficial/deep, cold/heat, deficiency/excess, and Yin/Yang. Determination of treatment for IBD conditions is an art and varies day-to-day. However, one way it may be described is as "Damp-Heat". The spleen may be said to fail in it's transport of fluids, and therefore "Dampness" is generated. When "Dampness" accumulates "Heat" is released. This forms the combination "Damp-Heat". The "Damp-Heat" affects circulation of the visceral Qi (pronounced "chee") in the large intestine, causing stagnant Qi and blood in the large intestine and leads to impaired function. This then results in abdominal pain and diarrhoea. Suitable herbs and acupuncture are then prescribed with the aim being to reverse this deviation from the norm.
Dietary Delights
(Meeting held on March 12, 1997)
This talk concentrated on practical aspects of diet and IBD. Kerry started with some general information about diet, such as the cultural and social aspects of how and why we eat. For a healthy person, over 40 different nutrients are required in our daily diets. For people with IBD, the daily requirements of items such as iron, carbohydrates and protein are higher than someone without an IBD.
But what we eat can be affected by age, severity of symptoms, surgery, and severity of the disease.
Teenagers are usually more affected by their disease but are more adaptable and get better quicker. As we get older our recovery is slower.
People with ulcerative colitis need more fluids, salt and potassium in their diet and when they have had surgery and the formation of a pouch there is a need for even greater salt intake and management of fibre intake.
Crohn's disease is most likely to be in the last part of the small intestine (ileum). The small bowel is about 6 m in length but only 5 m is essential to give proper absorption of food. Some people with Crohn's disease can need many operations and be left without some of the ileum. This can lead to a deficiency in the absorption of vitamin B12, calcium, iron and fat.
Kerry says...
Diarrhoea:- can be caused by shortened bowel length, non absorption and the bowel producing more fluid due to disease damage. YOU MUST KEEP DRINKING. But you can cut down on raw vegetables and fruit, as well as cereals.
Abdominal discomfort/distension:- keep eating, don't stop. The distension may be caused by swallowing air. Walking can help as well as other moderate exercise. Reduce foods that cause gas such as cabbage, onions, eggs, coleslaw, cauliflower, broccoli and brussel sprouts.
Fluids:- recognise the symptoms of dehydration (tingling fingers and toes and top of the head, headaches, decreased urine output and dark colour). We need 2 litres of fluids per day and we can't live without sodium and potassium which is lost easily when we get dehydrated. You should be passing urine 3 to 5 times per day and it should be a pale straw colour. If you are involved in sport then it is vital to replace lost fluids. Use gastrolytes and pedialytes such as Gatorade, which has the best levels of potassium and sodium.
It is very important to keep up your food and fluid intake even when feeling unwell. Remember we need 40 different nutrients every day. Variety helps here and when shopping for food keep this in mind. Read the labels and check out new foods.
CARBOHYDRATES: equal energy. Bread, pasta, cereals, vegetables, fruit and rice. Oat based porridges are very good. Carbohydrates soak up fluids and slow down the digestive process which is useful if everything goes through you quickly.
FAT: we eat too much. It should account for no more that 35% of our intake. If it passes though without being digested then it takes calcium with it. Bowel motions will reflect malabsorption. "See your toast through the margarine!"
Frying pan - No. Grill - Yes.
ALCOHOL: Beer is a laxative. Anything fizzy has air and can cause abdominal distension. Hard liquor is a toxin. (Say no more).
How to eat...
Regular sized and spaced meals are best. Chew your food well to a pureed consistency. The smaller the size of food particles into the stomach the better. Avoid stress at meal times which can aggravate the gut. Take your time and sit at the table not in front of TV. Make your evening meal smaller and make up for this with a larger breakfast.
Separate solids and fluids. Eating and drinking at the same time speeds up the digestive processes. Have your cuppa at least half an hour after eating.
Take vitamin supplements (if you need them) with the meal otherwise they can aggravate the stomach. Myadec is a recommended brand of multi-vitamin. Take Fluordix as an iron supplement if required.
Drugs and IBD
(Meeting held on November 4, 1997)
On November 4th the CCSG held it's final public meeting of 1997. The guest speaker, pharmacist Mandy Ford, presented a review of the major drugs used to treat inflammatory bowel disease (IBD). In addition, there were brief discussions held on two of the newer drugs used to treat Crohn's disease and colitis.
Mandy Ford (MPS) is a pharmacist working at the Remuera Pharmacy in Auckland. Her presentation was informal and often stimulated questions from the people who attended the meeting. She covered the details of the structure of the drugs, how they work, which ones are prescribed for what patients (Crohn's or colitis, or both), side effects, instructions on how to take them to avoid some side-effects, and what other conditions they are used for. The overheads used for this talk have been made available to the CCSG and therefore we can photocopy these for anyone who would like to see them. Information is available on the following drugs: Salazopyrin®, Pentasa®, prednisone, azathioprine, methotrexate, Colifoam®, metronidazole, and loperamide. As a result of questions from members present, more detailed information has been acquired about Pentasa® and Dipentum®, and copies of this information is also available on request.
In addition to the drugs that Mandy discussed, brief presentations were given by Millie Chin from Astra Pharmaceuticals, who make the new Crohn's drug called Entocort®, and Ian Mathieson from Baxter Healthcare who make Asacol®, which is usually used to treat colitis. For more information about Entocort®, see the following article.
Following up from the article in our last newsletter, here is some more information about Entocort®, a new drug for the treatment of Crohn's disease.
Studies show that Entocort® does the same job as prednisone and just as effectively, but with a significant reduction in the side effects and consequent withdrawal symptoms when taking the drug. Although it is a steroid like prednisone, it works mostly where the disease is located. In contrast, prednisone is absorbed into the blood and has effects all through the body, hence the number of side effects. 50% fewer people taking Entocort® experience side effects than with prednisone.
Entocort® is now available in New Zealand - at a price. Although it is hoped that one day soon Pharmac (the drug funding agency in NZ) will subsidise this medication, at the moment if you want it, and you and your specialist decide you need it, it'll cost between $100 and $300 for a month's supply, depending on the dose of Entocort® and the pharmacy mark-up.
However, the CCSG is trying to make meeting this cost a little easier. A letter of introduction to your pharmacist, prepared by the CCSG, might mean that you can get Entocort for a lower price per month. If your pharmacist is accommodating and gives you the lower price we'll publicise that Pharmacy to other CCSG members via the CCSG News and our internet Web Site. Hopefully the possibility of further business from CCSG members from this publicity and the good PR generated from this action will be enough to encourage pharmacists to make Entocort® available as cheaply as possible to CCSG members.
So, if you have a prescription for Entocort®, or are thinking of requesting it from your doctor because you can't tolerate prednisone, be sure to contact the CCSG for information about the CCSG Entocort® programme and ask for details about how you might be able to save yourself some money and get Entocort® at the lowest price possible.
N.B. The way this drug is formulated means
it is not appropriate for the treatment of ulcerative colitis.
Medical Herbalist Talks about IBD
(Meeting held on March 29, 1998)
On a wet Sunday afternoon Leanne James, medical herbalist and iridologist, spoke to about 50 CCSG members about how to manage their disease with diet and herbal supplements.
Leanne first gave some background on the symptoms and causes of Crohn's disease and ulcerative colitis. One of her key points was that lack of nutrients because of malabsorption may weaken the immune system and prolong the healing time of inflammation.
Dietary Factors
Some patients with IBD may have food allergies - wheat and dairy and the most common offenders, and the yeast found in bread has been found to irritate the bowel of some IBD patients. In addition, a diet high in fat and sugar, and low in fibre has a strongly disruptive effect on the 'good' gut flora.
Main points:
* Psyllium is a good form of fibre - it helps things move through the bowel, but is less abrasive than other fibre. BUT you need to drink a lot of water with pysllium otherwise it can cause blockages (Metamucil is psyllium-based).
* Common problem-causing foods are dairy products, wheat, sugar, fermented foods and drinks, and yeast products. Also, cruciferous vegetables (eg. cabbage and cauliflower), corn, tomatoes, eggs.
* Some fruits that contain fructose may annoy the lining of the bowel.
* Magnesium deficiency can sometimes be a contributing factor as magnesium is important for the peristaltic movement of the colon (a craving for banana's is often a symptom of magnesium shortage).
* 'Yellow' or 'Orange' vegetables are excellent.
* Oats and millet are low allergy grains (but millet tastes awful!).
Supplements
Leanne's take-home message here was to stick to simple/single supplements because if you take a multi- preparation, you don't know which part of it is doing the good.
* Acidophilus - essential to maintain "friendly" intestinal bacteria, but supplements are better than yoghurt as this can be neutralised in the stomach.
* FructoOligoSaccharides (FOS) - 'feeds' acidophilus.
* Oral zinc - very good in Crohn's patients with low zinc levels.
* Vitamin K - this can be low in patients with ulcerative colitis. Alfalfa is a good source, and you can get supplements.
* Pantothenic acid, vitamin B5 - deficiencies can cause abdominal distress, vomiting and cramps.
* Essential fatty acids - these act as anti-inflammatories and are very important.
* Mineral supplement - this may be needed, especially if dairy products have been eliminated from the diet.
* Vitamin B6 and magnesium - can be given to help relax the muscles and control a spastic colon.
* Digestive enzyme - essential to ensure food is being correctly broken down.
The question is WHICH supplements to take.
Many of those available are in forms that are not readily absorbed.
Leanne recommends that you get advice from an expert to make sure you get a good quality supplement - which is not necessarily the most expensive!
Herbs
* Relaxant herbs - chamomile (overuse causes diarrhoea), valerian, Kava Kava, Scullcap, Passion flower, hops and St John's wort.
* Slippery elm soothes the colon.
* Bee pollen is a nutrient-rich food, as are spirulina and chlorella (NOTE: be very careful with bee pollen, and if you have allergies or asthma, seek advise before using).
* Fennel, ginger, papaya, pineapple and pawpaw all help with digestion.
* Aloe vera juice (a tiny amount to begin with) softens stools and has a healing effect, and is specific for bowel disorders. It will aid in the healing of the colon.
* Cats claw is an antiviral herb, and is specific for Crohn's disease and ulcerative colitis (the liquid tastes awful, but is very powerful).
* Wild yam is a powerful anti-inflammatory, and helps the
body to make its own steroids.
Notes fron the 1998 AGM
(Meeting held on June 21, 1998)
The following notes are taken from the President's and Treasurer's reports, as well as a summary of the meeting proceedings.
This years AGM marked the 10th anniversary of the incorporation of the CCSG. Prior to this the group was known and the Inflammatory Bowel Disease Support Group. During the last 10 years the CCSG has gone from an informal chat group for a dozen or so people here in Auckland to the professionally run incorporated society it is today.
Our current financial membership stands at almost 300 and there are 11 groups all round New Zealand. We are involved in 2 medical research projects, are listed worldwide as the NZ support organisation for people with Crohn's or colitis, and supply most major NZ hospitals with patient support information.
The major new activity of the CCSG over the last 6 months has been the implementation of the new sponsorship deal with Pharmaco (NZ) Ltd. By working closely with Pharmaco representatives, the CCSG in Auckland is developing this project so all groups around the country can benefit from the support of Pharmaco. Already this arrangement has seen the introduction of a new standard logo to be used by all CCSGs to increase national awareness of the group among medical professionals. In addition, the CCSG pamphlets series is to be distributed to CCSGs all over NZ free of charge, courtesy of Pharmaco. A standard letterhead is to be designed as well as postage paid envelopes overprinted with the CCSG logo for distribution of CCSG material. All in all this series of changes to the 'look' of the CCSGs will give an image of a professional and co-ordinated organisation which doctors can feel happy about referring patients to regardless of where in NZ they might be.
Continued sponsorship by Pharmacia & Upjohn Ltd. and Baxter Healthcare, as well as the new sponsorship by Astra Pharmaceuticals (NZ) Ltd. has contributed to the stability and security of the CCSG.
Financially the CCSG is in a sound position with an excess of income over expenditure of $2294.
Paul Rogers resigned from the CCSG committee for personal reasons this year. All other committee members accepted nominations to stand again in their previous capacities and were elected without opposition.
1998/99 CCSG Committee:
President: Stuart Ryan
Treasurer: Raewyn Bluck
Secretary: Nicola Ryan
Committee: Shirley Hartshorne, John Ballard, Dale Gutry, Karen Constable
The Accounting company, Ling, Adams and Ballard was reappointed as CCSG Auditors without opposition.
After the business of the AGM the meeting transformed into an informal "open forum" gathering. The 3 guests, Prof. Cliff Tasman-Jones, Dr Ian Wallace (both gastroenterologists), and Stephanie Morrison (dietician) were available for questions and discussion. Also present was Millie Chin from Astra Pharmaceuticals, makers of Entocort®. Light refreshments were available and the meeting continued for another 11/2 hours.
Mark Lane Discusses IBD
(Meeting held on August 25, 1998)
Dr Mark Lane is a strong supporter of the CCSG, as well as being
a leading figure in the field of gastroenterology - specifically
the treatment of Crohn's disease and ulcerative colitis in New
Zealand. This means that CCSG members can get the very best and
latest information about their condition by attending a talk
given by Dr Lane.
The presentation began with a description of the main differences between Crohn's disease and ulcerative colitis.
Crohn's disease (CD)
- intermittent patches of inflammation
- can occur anywhere through the gut
- affects all layers of the bowel
- 70% in lower small intestine & colon
vs Ulcerative Colitis (UC)
- continuous inflammation
- occurs only in the colon
- only affects mucosal (inner) layer of bowel
There appears to be an environmental influence at a very young age which means that your place of birth determines your chances of getting an IBD. eg. Japanese born in Japan = low risk of CD; Japanese born in the USA = high risk of CD.
Anti-tuberculosis drugs for treating CD failed. 4 or 5 different drugs have been tried. In fact there has been extremely limited success in treating IBD with antibiotics.
Age of onset is typically 15-25 yrs for both CD and UC. There is now a higher frequency of CD than UC.
Familial patterns of IBD
- 10-25% occurrence of IBD in relatives
- strong concordance by disease category
- genetic vs environmental influences still unresolved
- CD tends to run in families whereas UC could have either UC
or CD within the family.
In CD particularly it appears that exposure to "something that causes CD" must occur before the age of 2 years. But what???
Etiological Theories of IBD
· infections · vascular · immunologic · neuromotor · genetic
· allergic · dietary · psychogenic (no
longer considered) · environmental
Ethnic and racial incidence of IBD
10 / 100,000 in Jews
4 / 100,000 in non-jewish caucasians
2 / 100,000 in blacks
This would suggest that it is the genetic risk that is dominant in determining whether you get IBD rather than being exposed to something.
See 'environmental influence' and 'familial patterns' in the
main text.
Drugs for treating IBD (Always ask your doctor what is the likely outcome of this treatment).
· Sulfasalazine (salazopyrin): local effect on large
bowel in CD.
· Mesalamine (Pentasa®): less side-effects than salazopyrin;
designed to release drug throughout small and large bowel.
· Steroid enemas: for distal disease in the colon.
· Oral steroids: for severe attacks; may need to be aggressive
for long periods.
· Entocort® (budesonide): topically active on bowel
wall, no systemic effect - therefore fewer side-effects than
prednisone. (NB not funded by Pharmac).
· Azathioprine: now used as maintenance therapy for CD
and UC
(See the CCSG pamphlet on Drugs for more information).
Selected question answers...
Most symptoms of IBD arise from a) inflammation, b) obstruction c) fistulae.
Complications of UC are commonly bleeding, diarrhoea.
Cancer risk? There is increased cancer risk IF you have 'total' colitis or CD in all the colon for more than 10 yrs. If you are in this small group of IBDers then you should have colonoscopy every year.
Surgery in CD? Overall there is a 50% recurrence rate after 5 years.
Facts & Fiction about Diet and IBD
One of the most successful public meetings that the CCSG has ever had was held in the evening of November 24th. More than 70 people crowded into the Marion Davis Library dining area to discuss the role of diet and inflammatory bowel disease (IBD). Guests were Stephanie Morrison (North Shore Hospital dietician) and Kerry McIlroy (nee Maher) a dietician specialising in the treatment of Crohn's disease and ulcerative colitis. Based at Auckland Hospital and working along side Professor Graham Hill and Dr Mark Lane, Kerry has many years experience with IBD and the dietary needs of people with these diseases.
This is simply the most important issue regarding diet and IBD. Many people are looking for some magic bullet that will solve all their troubles; eliminate their symptoms and allow them to reduce, or stop, their medication. It does not exist. Some people are lucky and find a food that has aggravated them and eliminating it does make a difference. For others, a change of eating habits towards a more "healthy" diet also helps. However we are all different and there is no diet that works for all.
The basis of most diets is starchy foods. These should be included in every meal if possible.
Include a wide variety of foods and ENJOY them.
Everyone is different.
Don't restrict yourself too much. This can result in malnutrition! For example, cutting out dairy foods results in reduced calcium intake which can exacerbate bone problems induced by steroid use and the disease process.
IBD goes in cycles. As the disease improves you can introduce a greater variety of foods into your diet. However, when it flares you may need to cut a few things out.
Such foods include raw and green vegetables which can be reduced or eliminated for a few days or a week. These foods can increase the number of bowel motions when having a flare. Other foods can be substituted if necessary.
Alcohol can increase diarrhoea, especially beer which is a laxative. In fact this is a common effect in people without IBD.
"Junk food" is OK but only when it is considered a treat and eaten once a week/fortnight.
Spicy foods are OK if you tolerate them and are well. If you enjoy it there is no reason not to eat it.
Often the change that results in the greatest benefit is a change of lifestyle with some behavioural modifications. That is, having 3 regular meals a day, not skipping meals, eating a full and varied range of foods.
Questions from the floor...
1. Probiotic yoghurts? These are becoming more available now. They make it through the stomach to the bowel unlike acidophilus which is for the most part destroyed by the acid in the stomach.
2. Fructo-oligosaccharides? These are a type of carbohydrate which are beginning to be used in hospitals as part of enteral feeds. They help to improve bowel bacteria.
3. Fish oils? Expensive and not available on prescription. Used as a pharmaceutical particularly in Crohn's disease. Dosage is 2-3 tablets per day. Note of caution: it tastes awful and the taste repeats when you burp.
4. Glutamine? This is an amino acid which is good as a food for the cells of the small bowel. Results from medical studies are conflicting - some shown benefits and others don't.
5. Citrus fruit? Your stomach is more acidic than any citrus fruit so it should not be a problem. In addition, citrus fruits are good sources of vitamin C and antioxidants. Note: stewed apple might be a good alternative if you can't tolerate citrus. It is high in vitamin C and also pectin which absorbs water so is good for people with an ileostomy.
6. Constipation and IBD? We need more than 2 litres of fluid per day. We also need cereal fibre (wheat bran, wholemeal bread). Kiwifruit can be useful here because it contains a natural laxative (juice or fruit).
When you have a flare your gut does not absorb food. Fibre becomes astringent and goes straight through you. Cut out raw fruit and vegetables.
Try having white bread and use a nutritional supplement such as Complan or Ensure made up with milk or water. These do not replace a meal but add to calorie intake. Note: Do not use sports supplements as their protein content is very high which can place a lot of stress on the kidneys.
CCSG Diet Resources
The last part of this meeting was taken up in a discussion of the CCSG resources that relate to diet. Stephanie Morrison had read several titles before coming to the meeting and made the following comments.
Breaking the Vicious Cycle - Elaine Gottschall
- some things mentioned are true (anatomy, body biochemistry) and it does mention fructo-oligosaccharides. There are some anecdotal stories from people who have used the specific carbohydrate diet. "If you had no information you could quite easily believe all of it is true". Not so. The small booklet Healthy Eating for Adult NZers published by the Ministry of Health contains just as much useful information. You need quite a bit of background information to get the most out of it. Not recommended for newly diagnosed people.
IBD Nutrition Book - Jan Greenwood
This book is written by a dietician from Canada. The information is very good and gives a balanced approach. Highly recommended by both Kerry and Stephanie.
Diets to Help Colitis and IBS - Joan Lay
This is a new edition of a 1988 book and is written by a naturopath. It is sound in its information but is put together in a slightly confusing way.
Questions & Answers about Nutrition and Diet - CCSG information Leaflet No. 3
This pamphlet was recommended as a very good resource with useful and well balanced information and advice. Good start for people newly diagnosed or for people with no other nutrition/diet knowledge.
Stephanie and Kerry stayed on for a little longer after the conclusion of the formal part of the meeting and left only when they could get away from the many interested people who gathered to speak with them informally.
This meeting was the last for 1998 and concluded with a pleasant evening of good food, good wine and plenty of talk about IBD.
General Practitioners and IBD - are you OK?
What do General practitioners (GPs) know about Crohn's disease
or ulcerative colitis? For most GPs having even a single patient
with IBD would be unusual. However, many people with IBD use
their GP as their first point of contact when dealing with the
ups-and-downs of their disease. Results from our recent survey
show that over half of CCSG members use their GP for treatment,
either alone or in conjunction with a specialist.
Dr Barbara McKinney was the guest of the CCSG and spoke about
the role of GPs in the treatment of Crohn's disease and ulcerative
colitis. GPs who are members of the College of GPs are required
to to a certain amount of Continuing Medical Education to maintain
membership and as a result attend a number of seminars throughout
the year to keep informed about topics such as inflammatory bowel
disease.
Dr McK: GPs are more aware of the "whole person" than specialists, ie. their other medical requirements as well as their IBD. Specialists see you mainly at times of crisis and may attribute all your symptoms to IBD. Even if you see a specialist you will most likely need to see a GP for your overall healthcare needs anyway. Once a diagnosis and management plan has been determined, it can be maintained by a GP rather than a specialist.
CCSG: At what point does a GP hand over a case to a
specialist?
Dr McK: This varies form GP to GP. The drugs used to treat
IBD are not exclusive to specialists. Prednisone is used by GPs
for a variety of diseases, not just IBD, so GPs are often very
experienced in using it. GPs can also prescribe mesalazine and
sulfasalazine. Immunosupressants, eg. azathioprine, are usually
prescribed for the first time by a specialist but can be maintained
by a GP. The specialist responds to the first referral and usually
sends notes to the GP after each consultation. If you see your
specialist often, then they may forget about keeping the GP informed.
All relationships rely on trust; patient <-> GP <->
specialist <-> patient.
CCSG: What information can you give your GP?
Dr McK: A GP should take a full history. How long have
the symptoms have been going on for? Has it happened before?
Any weight loss? Family history of IBD?
CCSG: What about testing for food intolerances? For
example, lactose?
Dr McK: You must withdraw the food for at least
a week, then challenge (with a glass of milk) and record the
symptoms. This needs to be repeated 3 times for a definitive
diagnosis of lactose intolerance. If you are avoiding all dairy
produce then your calcium intake will be low, which is a problem
in women and those on prednisone. You could use soy milk (which
is fortified with calcium), or you may need supplements. A dietician
can help you with this and your GP can recommend someone appropriate.
Patient Advocacy Issues:
- The content of medical files held about you must be made available
for you to inspect if you want to. However, the actual notes
are the property of the person who wrote them.
- GPs book 10-15 minute appointments so if you have a lot to
discuss then it is best to book a double appointment.
- Write a list of questions so you don't forget what you want
to ask. Showing the GP your list at the beginning of your appointment
may help the GP ensure you cover everything in time.
- To find a GP ask within the support group or ask your specialist.
They may be able to recommend one. (The CCSG has a database of
specialists and recommendations from members).
- GPs refer to specialists they trust and know will do a good
job looking after you. They do try to match personalities if
possible so the patient feels more comfortable.
New Zealand TV celebrity Jim Hickey
talks about his Crohn's disease
talks about his Crohn's disease
July 4th. Marion Davis Library, Auckland Hospital. At the
conclusion of the AGM (details later), Jim Hickey eased his way
through the 200 people seated in the auditorium to address the
invited guests and members of the CCSG.
Jim Hickey, TVNZ weatherman, was the guest of honour at this
year's AGM. Not knowing quite what to expect, Jim had come to
speak simply about his experience of having Crohn's disease.
Since "coming out" in 1997 via an article in the NZ
Woman's Weekly, Jim had kept his disease and experiences pretty
much to himself. Until now...
As a surf lifesaver at the New Plymouth Surf Club Jim was involved
in a fundraising event whose aim was to circumnavigate NZ in
the rigid hull inflatable boats that surf lifesavers use at surf
beaches around NZ every summer. It was during this event that
Jim first became sick, although at the time he had no idea it
was to turn out to be Crohn's disease. He lost weight rapidly.
When the symptoms lingered and failed to resolve on their own
it was time to seek medical help. Dr Ian Wallace diagnosed Crohn's
disease in 1991 and immediately prescribed prednisone to get
the disease under control. Three years of the Crohn's "roller-coaster"
followed. Some days he couldn't get out of bed but others he
could work or go to the gym. Every day would be different. In
an effort to tip the balance he also tried some alternative medications
such as Slippery Elm and Cat's Claw.
"Cured by my faith"
It was during this time that Jim became a Born Again Christian.
Using his faith as his weapon against his disease, Jim and members
of his church prayed for his healing. After some years of prayer,
Jim's Crohn's disease went into remission and he is now firmly
of the opinion that it was his strength of faith that lead to
him being "cured" in 1995. Since this time he has been
well and without any sign of the disease.
"Have a positive attitude"
All the time he had symptoms and took medication Jim maintained
a positive attitude. He was not going to let the Crohn's win.
He modified his diet and cooked simple, easy to digest meals.
He cut out coffee, cakes and sugar and drank lots of water. He
was also determined to maintain an exercise routine as much as
he could.
In remission
Now Jim has carried over some of these healthy habits into
his new healthy life. He no longer snacks between meals and still
follows the "diet/water/exercise" plan he developed
during his 4 year struggle with Crohn's disease.
The Crohn's may have gone, but it's lessons live on.
Feedback
Having Jim Hickey at our AGM was a real priviledge. Jim gave
of his time freely and stayed afterwards to share a drink and
afternoon tea with the many people who had come especially to
hear him speak. He was generous in his praise of the CCSG and
what it has to offer and was genuinely impressed by the appearance
of good health that the audience conveyed. Many people have since
commented that they enjoyed his talk - all unprepared - and his
empathy with the audience was obvious. I personally would like
to thank Jim for agreeing to my request to speak to us. I also
hope it is not the last time we see Jim Hickey at a meeting of
the Crohn's and Colitis Support Group. A thoroughly enjoyable
afternoon.
Diagnosis of Crohn's Disease & Ulcerative Colitis
Meeting date: October 19, 1999
Venue: AstraZeneca House, Epsom, Auckland.
Dr Ali started his talk by stating that "We don't know the
cause of inflammatory bowel disease (IBD), therefore there is
no cure". He then went on to provide a bit of background
on IBD in general.
IBD features
IBD is more common in "White" races, and is rarely
seen in Maori. For ulcerative colitis (UC), there is are 2 ages
where the incidence is higher - one younger and one older. The
peak incidence of Crohn's disease (CD) is in younger patients.
Both UC and CD are more common in females.
According to Dr Ali, there is a continuum of findings when diagnosing
IBD. At one end of the spectrum is UC, with mucosal inflammation
and occurrence only in the large bowel (colon), and at the other
end is CD, with inflammation through the whole thickness of the
bowel and occurrence in any part of the gastrointestinal tract,
and anything in between. CD is most common in the terminal ileum
and the beginning of the large bowel.
Diagnosis
IBD is diagnosed on the basis of clinical features and the results
of tests. Clinical features consist of signs, which are things
observed by the doctor, and symptoms, which are what the patient
reports.
By taking a history of signs and symptoms, and by performing
a clinical examination, the doctor gathers information and weights
different factors individually for each patient.
Presentation
Some of the common IBD symptoms are listed below.
UC:
- diarrhoea (bloody) - fever
- abdominal pain - weight loss
- frequency - urgency
- malaise
CD:
- diarrhoea (non-bloody)
- abdominal pain - bleeding
- fever - weight loss
- perianal disease
Tests used
Blood tests: these are usually taken first. What the
doctor is looking for here includes levels of different inflammatory
markers and evidence of infection. Blood test results provide
general and useful information, but cannot be used to specifically
diagnose IBD.
Stool culture: this is done to exclude any infectious
cause of symptoms.
Colonoscopy: the availability of this technique has revolutionised
the diagnosis of IBD. When done well, the whole of the colon
can be viewed, and it may also be possible to see the end of
the ileum. During colonoscopy, doctors look at the type of ulceration,
extent of disease and severity of disease. A biopsy may be taken
during colonoscopy to allow analysis of histopathology,
which shows differences between UC and CD.
Sigmoidoscopy refers to the same examinations done in the rectum
only.
Barium meal/follow-through/enema: these are performed
less often these days, but can be useful where strictures prevent
the use of colonoscopy.
Small bowel x-rays: these are used relatively often in
CD, to determine the extent and severity of disease.
Distinguishing CD from UC
When CD occurs only in the colon, it can be difficult to distinguish
it from UC. Dr Ali listed a number of findings that would indicate
that a patient had CD in the colon rather than UC. These include:
- any small bowel involvement
- no disease in the rectum (approx. 90% of patients with UC have
disease in the rectum)
- perianal disease
- focal lesions
- segmental distribution (UC always occurs in a continuous piece
of bowel)
- asymmetrical involvement
- presence of fistulas
- granulomas
Cancer and UC
Answering a question from the floor, Dr Ali said that the risk
of cancer is dependent on the duration and extent of UC. The
risk increases after having had UC for about 15 years. However,
this risk is not increased for UC in the rectum only, slightly
increased for patients with UC in the rectum and sigmoid colon,
and slightly increased in those with total colitis. Dr Ali recommended
regular surveillance with colonoscopy after having UC for 10
years. Colonoscopy can detect cell changes (dysplasia) about
2 years before cancer develops. Therefore, colonoscopy every
1-2 years is best. In Dr Ali's experience, development of cancer
in UC patients under surveillance is rare.
In Conclusion
Dr Ali said that IBD is not curable, but it is manageable. Treatment
goals include:
- control symptoms
- avoid complications
- restore acceptable quality of life
- minimise drug toxicity
(written by Staff Writer)
Discussion Group: Informal and Friendly
Since March of this year I have attended on a monthly basis an informal discussion group initiated by Carol Harper (CCSG member and social worker).
My initial thoughts on hearing about such a group were: 'Well why not give it a go? What have I got to lose?' Not only that, but Carol lives less than 5 minutes away!
I guess I didn't really know what to expect, but any apprehension I had was quickly lost as I was welcomed by Carol and at least 2 other CCSG members. I was invited to take a seat and quickly began to relax in the cosy surroundings.
Since that initial meeting, the group has maintained a core of three to four people, with others attending on a more casual basis.
As mentioned earlier, the group is very informal, which adds to the relaxed atmosphere and people are free to ask questions and relay thoughts and experiences.
Currently with the group being so small most discussion is as a group, and therefore I find that everyone gets a chance to have a say, ask questions, etc. Naturally enough the prime subject discussed is IBD and related issues, but as the group members have become more acquainted, the range of subject matter has expanded.
For me personally, having had Crohn's colitis for at least 10 years, I thought I had a reasonable knowledge of the illness, it's implications and idiosyncrasies. However, this couldn't be further from the truth.
The information gleaned from such a discussion group is nothing short of mind-boggling, with seemingly endless variations of how the disease(s), drugs and surgery can affect an individual, and the impact of IBD on their lives, both positive and negative.
I realise that such a discussion group is not for everyone. Lets face it, IBD is not the most pleasant of subjects.
However, for me personally, being able to relate to other IBD sufferers has proven quite helpful and no doubt there are many others of you out there who may enjoy the contact with such a group.
A note from co-ordinator, Carol Harper:
"We would really like to welcome more new members
to our friendly discussion group, which is held monthly. If you
are interested, please phone me on 278-1024, or the CCSG on 636-7228".