Exclusively available to members, The Inside Story: A Toolkit for Living Well with IBD is a comprehensive resource on issues that can affect people living with Crohn’s or ulcerative colitis.
The first of its kind in Australia, this IBD information kit was developed after many years of listening to the needs and concerns of our members. The 196-page publication includes input from leading specialists from around Australia. Topics include diet and nutrition, medications, surgery, emotional factors, pregnancy and fertility, education, children and IBD, and many more.
Members can access the IBD Toolkit online via the members-only section of our website. Atlernatively, copies can be mailed to members for the cost of postage and handling. Visit our shop to order. Please note orders will only be accepted from financial members of CCA.
Living with IBD
Many children with IBD do not completely understand their condition or what they are going through, and this can affect them emotionally.
IBD is often thought of as a “young person’s disease” because its onset is typically between the ages of 15 and 35, although it can certainly be diagnosed at a younger age.
The school’s involvement can help these students live normal lives, while lack of involvement and support from the school can lead to poor adjustment on the students’ part, which can then lead to:
- difficulties completing work on time;
- diminished academic performance;
- difficulties sitting exams;
- difficulties maintaining relationships with school friends;
- difficulties participating in school activities (e.g., physical education, excursions);
- lack of confidence, motivation, or self-esteem; and
- issues relating to body image
Many people with IBD live very normal lives, but students with IBD will most likely experience a disruption to their education, extra-curricular activities, and social life. IBD can also disrupt their
physical growth and maturity, especially during the critical stage of puberty and adolescence.
A major physical impact of IBD on children up to 12 years old is delayed growth. This means that the student might be shorter, thinner, and/or smaller than his peers.
Children with active disease might seem frail, and sometimes listless and lacking in energy. And while they might actually look well at times, they still could be suffering from other symptoms, such as cramps and lack of appetite.
Adolescence is a time of extreme self-consciousness and insecurity. For adolescents with IBD, this time can be far more challenging.
Teens with IBD can become even more self-conscious than their peers, especially if they look younger and different. This makes it more it difficult for them to socialise and participate in activities.
Young people with IBD who are about to start tertiary education have many new things to deal with, and might find that stress worsens their symptoms. It is therefore important that they thoroughly prepare well ahead of time, to lessen the stress later on.
For more information, see The Inside Story: A Toolkit for Living Well with IBD available in the Member’s Only section of the website.
Download Students with IBD (PDF 770KB) or call our office on 1800 138 029 to have a copy sent out to you.
IN THE WORKPLACE
Crohn’s & Colitis Australia have developed two booklets specifically designed to address concerns about IBD in the workplace, from both the employer and employee perspectives. They can be downloaded from this page or contact us on 1800 138 029 to have a copy sent out to you.
Working with IBD: A Guide for Employees
Working with IBD: A Guide for Employees PDF Downland 3.44MB
Working with IBD: A Guide for Employers
Working with IBD: A Guide for Employers PDF Download 3.30MB
If you are considering altering your diet, we recommend that you do so under the guidance of a qualified dietitian. Locate your nearest Accredited Practising Dietitian at www.daa.asn.au
Diet and food allergies do not cause IBD, and long-term special diets are not effective in treating IBD. However, adjusting your diet can help manage some of your symptoms, and can help IBD medications work better.
During flare-ups of disease, some people find that a bland, low-fibre diet is easier to tolerate than one that contains high-fibre or spicy foods. Low-fibre diets are those that avoid fruits and vegetables, nuts, raisins, seeds, bran and whole grains. These diets tend to stimulate less secretion of intestinal fluids and cause less contraction in the small and large intestines and may help to control symptoms such as abdominal cramps and diarrhoea.
A dietitian is a vital member of your clinical team and will assist you to work out a dietary plan that is just right for you. In Australia, Accredited Practising Dietitians (APDs) must be members of the Dietitians’ Association of Australia (DAA). You can locate a dietitian near you by visiting the DAA website.
Is there a special diet for IBD?
Most people with Crohn’s disease or ulcerative colitis tolerate all types of food and don’t require any dietary restrictions. In fact, avoiding certain foods or eliminating an entire food group can contribute to nutritional deficiencies.
During flare-ups of disease, some people find that a bland, low-fibre diet is easier to tolerate than one that contains high-fibre or spicy foods. Low fibre diets are those that restrict the harsh skins and seeds found in some fruits, vegetables and dried fruit, in addition to nuts, seeds and wholegrains.” These diets tend to stimulate less secretion of intestinal fluids and cause less contraction in the small and large intestines and may help to control symptoms such as abdominal cramps and diarrhoea.
Achieving and maintaining overall good nutrition far outweighs any sort of blanket recommendations about diet
In cases of Crohn’s disease when an area of the small intestines has become narrowed (i.e. a ‘stricture’ has developed), a very low-fibre or even a liquid diet may be necessary to minimise the discomfort of abdominal cramping.
For each and every person with IBD, individual experience is the most useful guide to selecting the types of food that can or cannot be tolerated. Foods that cause problems for one person with IBD may not affect you at all. If you follow the ‘foods to avoid’ advice of others with IBD or from internet sources, you may find yourself eating a highly-restricted diet unnecessarily and increasing your risk of malnutrition. Remember, too, that foods you have to avoid during flare-ups may not be a problem when you’re well.
In general, achieving and maintaining overall good nutrition far outweighs any sort of blanket recommendations about diet. If you have a particular liking for a specific type of food, you’re in the best position to decide whether the enjoyment of eating it from time-to-time is worth the possible symptoms such as pain, cramping and bloating.
For more information, see The Inside Story: A Toolkit for Living Well with IBD in the Member’s Only section of this website.
The low FODMAP Diet
The low FODMAP diet, developed by researchers at Monash University, eliminates foods that can be malabsorbed by some people.
FODMAPs stands for a group of carbohydrates Fermentable Oligo-saccharides, Disaccharides, Mono-saccharides and Polyols that can be poorly absorbed in the small intestine.
This malabsorbtion can cause symptoms of Irritable Bowel Syndrome (IBS) such as abdominal bloating, excess wind, abdominal pain, and changes in bowel habits. Many people with Inflammatory Bowel Disease (IBD) have adopted the diet and have found it to be helpful, although it does not affect inflammation in the digestive tract, it can reduce these symptoms.
Diet is not the cause of IBD nor is it the cure
There is little evidence to suggest that dietary factors cause IBD. Likewise, it is not possible to make your condition ‘go away’ permanently by adding or eliminating certain foods from your diet, or by eating only particular types of food.
Some people find that a particular food aggravates their symptoms; eliminating this food can make a positive difference. For most people though, the key to managing their condition is to eat a well-balanced diet that includes items from all major food groups.
Missing out on vital nutrients
Malnutrition is a common issue for people living with inflammatory bowel disease (IBD) and can have significant consequences if left untreated.
Smoking and Crohn’s disease don’t mix!
Researchers have known for a long time that people who have Crohn’s disease are more likely to be smokers but that didn’t prove that smoking caused or worsened Crohn’s disease. Over the years the evidence has been mounting and now we can say without any doubt that smoking worsens Crohn’s disease.
If you are a smoker, the good news is that giving up smoking is as good as taking medicine to stop it from coming back. Quitters have a 65% lower risk of flare-up than continuing smokers. That is the kind of benefit conferred by drugs like Imuran.
That is worth repeating – if you give up smoking, the benefit is as great as if you take medications to stop the disease from flaring up again. Put another way, you are less likely to need steroids or other immunosuppressive medications if you give up smoking.
What are the effects of smoking on Crohn's disease?
People who have Crohn’s disease and smoke have more problems than those who don’t smoke.
- There is a greater risk of developing abscesses and/or fistulae.
- Even when you are well, and the Crohn’s disease is under control, the chances of it coming back again are increased by 50-100% if you smoke. The more you smoke the more likely it is to come back again.
- Smokers are more likely to need the more powerful immunosuppressive therapy to keep things under control than non-smokers.
- The risk of needing surgery is almost twice as high if you smoke than if you don’t (73% vs 39% in a study from Germany).
- People who have Crohn’s disease and smoke have more problems after surgery than those who don’t. Surgeons in the UK collated the results of ten studies involving over 1300 Crohn’s disease patients and found that for smokers, there was at least 2-3 and perhaps up to six times the risk of Crohn’s disease coming back post-operatively.
- In addition, the more you smoke and the longer you have been a smoker, the greater the risk that it will come back again. This effect is greater in women than in men, but is present for both sexes.
- Children who develop Crohn’s disease are more likely to have been exposed to passive smoking at home. The risk of developing Crohn’s disease is greater, the more passive smoking the child was exposed to. Children whose mothers smoke at the time of birth are three times more at risk of developing Crohn’s disease. The children of people who have Crohn’s disease and who smoke are at a greater risk of getting Crohn’s disease themselves.
Please understand that if you have Crohn’s disease and you smoke:
Your Crohn’s disease will be harder to control
You are more likely to develop an abscess or a fistula
You are more likely to need more powerful immunosuppressive drugs
Your Crohn’s disease is more likely to come back again when things do come under control
You are more likely to need surgery
Your Crohn’s disease is more likely to come back after surgery
You are more likely to need additional operations
Your children are more likely to develop Crohn’s disease (even if they don’t smoke)
The bottom line: Just don’t smoke.
If I give up smoking, will this really help?
- The good news is, that if you have Crohn’s disease and can give up smoking for a year, you wipe the slate clean. It is as if you had never smoked.
- If you give up smoking you are more likely to get by without immunosuppressive medications.
- Giving up smoking reduces the chance of having a flare of Crohn’s disease by 65%!!!!
- It’s not going to be easy to give up, but it will be worth it in the end!
How can I go about giving up smoking?
Lose the guilt
You must not feel bad about your smoking or guilty that you find it hard to give up. Smoking is a very difficult habit to break and some people find it harder than others.
Although it is clear that smoking can affect your illness, it cannot be said that your illness would not have gone this way or that, or that you may not have required surgery if you had not smoked. All we have said is, that it is now known to increase chances of this or that, rather than smoking be a clear and absolute cause. So, first of all, don’t make matters worse by feeling guilty.
The second point is that there are plenty of options available to make giving up easier. The following suggestions may assist you, a relative or friend begin the process.
The most commonly known program is;
The ‘Quit Program’, Call 131 848. You can also arrange for an information kit to be mailed out.
Sometimes people need additional or alternative ways. These include:
Hypnotherapy - some people find the use of this technique much less stressful or a good support to other methods. Contact The Australian Hypnotherapists’ Association; National Information Line: 1800 067 557.
Nicotine patches - these can help enormously with getting over the craving, however, you will need to discuss with your doctor because of your IBD.
Special chewing gum - is another option, again discuss with your doctor.
Cognitive-behavioral programs - Psychologists with specialist training can conduct well-researched strategies for habit management and symptom relief. Contact The Australian Psychological Society, the National Referral Service is free phone 1800 333 497. Ask for a psychologist in your state, nearest to where you live.
Acknowledgement to Mr. David Stokes, Manager, Professional Issues, The Australian Psychological Society for his contributions towards this important issue. Kindly prepared by Dr Paul Pavli, Gastroenterologist, Canberra, Australia.
IBD & FERTILITY
Crohn’s disease and ulcerative colitis are most commonly diagnosed for the first time in people aged 15-35. This tends to coincide with the time in life when people are thinking about starting a family.
Most people with IBD are able to have children and raise a family although there can be a few additional challenges
It is important to know at the outset that most people with IBD are able to have children and raise a family although there can be a few additional challenges.
Generally speaking, IBD has no direct effect on fertility in either males or females. But there are instances where the medications or surgery used to treat IBD, or where the impact of IBD on a person’s general health, can cause a temporary but usually reversible reduction in fertility.
The single most important element to achieving a successful pregnancy and delivery is to have your IBD under control, ideally before you attempt to become pregnant and also throughout the pregnancy.
It is always a good idea to raise any questions or concerns you may have with your clinical team, including your gynaecologist. Medical and surgical treatment can be tailored to suit your own personal circumstances,.
Most women with IBD have normal pregnancies and normal deliveries. Problems during pregnancy are most likely to occur in women with active Crohn’s disease who may experience a greater risk of spontaneous miscarriage, premature delivery or stillbirth.
It is important to remember, however, that these complications of pregnancy are uncommon and that the majority of women with Crohn’s disease experience normal healthy pregnancies, especially if their disease is in remission at the time of conception.
For more information, see The Inside Story: A Toolkit for Living Well with IBD available in the Members Onlysection of the website.
FINDING A TOILET
Toilet access is a major concern for anyone with inflammatory bowel disease.
Our research has found that while it is very rare for a person with IBD to find themselves in a dire situation to go to the toilet, the stress of worrying about ‘if’ it is going to happen, and ‘if’ they will be able to access a toilet in time consumes every thought and every action they take.
People with Crohn’s and colitis can base many of their decisions, including where they visit, on feeling confident they will have access to toilets if required.
Can't Wait Program
The ‘Can’t Wait’ card is issued to members of CCA who have been formally diagnosed with Crohn’s or ulcerative colitis (IBD) access to a toilet in times of urgency. All cards are registered with CCA, the member’s name and their ID number is printed on the front of the card.
For a complete listing of participating businesses and for more information, visit the Can’t Wait website.
- Public toilets - Australia
- Finding a toilet overseas
Whether you’re going on a short trip or you’re off on that dream holiday, travelling with the unpredictability of inflammatory bowel disease (IBD) can present special challenges. By planning ahead and knowing how to reduce the chances of encountering problems, you can enjoy your holiday to its fullest extent.
- Reciprocal Health Care Agreements
TGA Health Safety Regulation
The TGA Health Safety Regulation website provides information for travellers with medicines or medical devices entering or leaving Australia.
www.smartraveller.gov.au provides official travel advice for Australians covering
- All destinations
- Travel insurance
- International travel checklist
- Consular services
Make sure to arrange travel insurance before you purchase your tickets. That way, if you happen to become ill prior to departure, your travel insurance should cover any cancellation fees.
Many people with a pre-existing chronic medical condition, such as Crohn’s disease or ulcerative colitis, encounter difficulties when it comes to travel insurance particularly if they have been hospitalised for treatment of IBD in the previous 12 or sometimes even 24 months.
Insurance companies generally don’t have blanket policies when it comes to covering people with inflammatory bowel disease; the decision to provide cover is made on a case-by-case basis.
If you already have private health insurance, the best place to start is with your own health fund to determine the level of cover you’ll have when you’re out of the country.
While CCA does not provide travel insurance nor endorse any insurance providers, we may be able to assist you in identifying suitable providers to approach in your specific situation. For more information, contact our Helpline coordinator on 1800 138 029.
Global network of IBD organisations
Crohn’s & Colitis New Zealand - crohnsandcolitis.org.nz
Crohn’s & Colitis Foundation of America (CCFA) - www.ccfa.org
Crohn’s & Colitis Foundation of Canada (CCFC) - www.ccfc.ca
European Federation of Crohn’s & Ulcerative Colitis (EFCCA) - www.efcca
Crohn’s & Colitis UK (CCUK) - www.nacc.org.uk
Irish Society for Colitis and Crohn’s Disease (ISCC) - www.iscc.ie
Association François Aupetit (AFA) - www.afa.asso.fr (French)
DCCV, Deutsche Crohn Colitis Vereinigung - www.dccv.de (German)
RMT – Riksfoerbundet foer Mag- och Tarmsjuka (RMT) - www.magotarm.se (Swedish)
AMICI Onlus, Association Nazionale per le Malattie Infiammatorie Croniche dell’Intestino - www.amiciitalia.net (Italian)
ACCU España – Confederación de asociaciones de enfermos de Crohn y Colitis Ulcerosa de España - www.accuesp.com (Spanish)
- World Bathroom Guides
If you are visiting Australia for a month or longer, consider becoming a member of Crohn’s & Colitis Australia. Keep up-to-date with what is happening, attend a local support group and/or information forum and get your own ‘Can’t Wait’ card to help you gain access to a toilet in case of urgency.
- Reciprocal Health Care Agreements
Bringing medicine into Australia
The TGA Health Safety Regulation website provides information for travellers with medicines or medical devices entering or leaving Australia.
Finding a toilet in Australia
The National Public Toilet Map shows the location of more than 16,000 public and private public toilet facilities across Australia.
Useful information is provided about each toilet, such as location, opening hours, availability of baby change rooms, accessibility for people with disabilities and the details of other nearby toilets.