Frequently Asked Questions

Please note that our experts can only address your questions in general terms and their responses are not a substitute for a visit to your own treating doctor.

If you would like more info on IBD please visit our About Crohn’s & Colitis section of the website.

You can also call our helpline on 1800 138 029 for more detailed help and advice specific to your circumstances.

  • What are the alternative treatments for Crohn's?

    What alternatives are there for treating Crohn’s Disease?  I’ve been taking Pentasa for Crohn’s for about a month, but I’ve started getting anything from mild headaches to migraines that are lasting days now.  I switched from Sulfasalazine because of the same symptoms.  Are there any alternatives that you could suggest?  Any other medications, diet or alternative therapies?  My gastroenterologist seems to think something steroid based is the next option, but I’d prefer to avoid steroids.  Any suggestion would be appreciated.

    Discuss the problem with your gastroenterologist and ask about other drug treatment options including the use of immunomodulators, which can be very effective as a maintenance medication in keeping the disease stable.  Steroids might still be needed in the short term.

  • Can Crohn’s disease cause swollen genitals?

    My 13 year old son, who has Crohn’s, has a swollen penis and scrotum.  GP does not know the cause.  Ultrasound and MRI have not identified anything.  He has seen a urologist, who cannot find a cause, says it’s idiopathic penile oedema, and suggests that he needs to see a plastic surgeon for a split skin graft.  Both the GP and urologist say it’s unlikely to be related to the Crohn’s, but I’m not convinced.

    Swelling of the genitals can occur in Crohn’s, but it is rare. There are known cases and some were found to be related to Crohn’s after analysis of the skin tissue.   Assuming that your son is under the care and supervision of a paediatric gastroenterologist, that’s who should be involved and consulted for further advice.     

  • Does Crohn's affect absorption of medications?

    I was wondering if having Crohn’s  affecting the small bowel, which is about 10cm or so that is affected now after having almost 3 feet of Crohn’s affected small bowel removed in 1995 and then being rejoined after having a stoma.  Can that affected small bowel affect the absorption of pain medication like MS Contin or oral Ordine, which I am on due to chronic pain for a chronic sinus problem and very painful, inflammatory arthritis affecting my left pelvic and lower back?  I also have adhesions, of course due to the surgeries.  I know very well what food and vitamins cannot be absorbed, e.g. B12, iron etc. 

    There would be sufficient small intestine left to compensate and absorb the medication.   If there has been little to no response to the treatment, this should be discussed with the doctor.

  • How can I stop feeling depressed?

    I have recently been diagnosed with  inflammatory bowel disease. I do not feel like I am coping at all well  as I have no one to talk to and feel very depressed. My partner tries to be supportive but does not understand how I am feeling. I do not want  to tell my friends what is wrong with me as I am afraid they will not  want to be my friends anymore. I feel very low and alone. I want to  “pull myself together” but just can’t.

    People generally experience a psychological  adjustment when diagnosed with a chronic medical condition. Symptoms of  anxiety and depression are common. People often feel a sense of loss and grief that everything is not functioning as well as it had previously.  There are associated fears about long-term prognosis. When diagnosed  with IBD people report distress about disruption to lifestyle (regular  bowel movements, often with a sense of urgency, anxiety about feeling  the need to be close to a toilet etc.), having to take prescription  medication indefinitely (some medication can illicit nausea, mood swings and irritability), and sometimes having to live with a level of chronic pain. These are some of the main changes experienced in people  diagnosed with inflammatory bowel disease.

    Societal attitudes preclude people from openly  discussing bowel problems. This usually compounds people’s sense of  isolation and willingness to disclose their condition to friends, family and work colleagues. Current statistics suggest one in ten Australians  have a bowel condition requiring medication and regular monitoring by  their doctor. If you are experiencing psychological distress about your  condition and lifestyle adjustment there are specialist counsellors who  have expertise in working with inflammatory bowel disease.

    Jeremy Cass, Clinical Psychologist, Box Hill North, Victoria.

  • What diet helps with a j pouch?

    What diet should I follow to help with j pouch due to ulcerative colitis?

    There is no set diet, but there are dietary considerations that may make a difference in helping to reduce output and change stool consistency. It would be very difficult to find a dietitian who has experience specifically with those who have a pelvic pouch however a dietitian experienced in gastrointestinal disorders can help. Crohn’s & Colitis Australia (CCA) can point you in the right direction with this. CCA can also offer contact with others who have a j-pouch and have or are going through a similar experience coping with changes to bowel function and making dietary adjustments.

    Other considerations include whether your pouch is newly functioning, which means it is yet to expand in capacity, or if medications prescribed to help slow down bowel activity are adequate. Pouchitis, which is an inflammation that can develop in the pouch resulting in diarrhoea and other symptoms, also needs to be considered so it’s important that you report any increase in frequency or problems with your pouch to your surgeon and gastroenterologist.

  • Why aren't some treatments available for UC?

    I have been diagnosed with 90% ulcerative colitis and possiblity 10% crohns and because of this I am being treated for ulcerative colitis. But I found some treatment to treat Crohns disease is impossible to get treated for UC like infliximab and humira. Can someone explain why especially when I read other countries use these for treatment for UC and crohns.

    A small percentage of people fall into a category where it is not possible to know for sure whether it is Crohn’s affecting their colon or if it is ulcerative colitis (UC). The term used to describe this is IBDU, which is IBD unclassified. Sometimes it is referred to as indeterminate colitis.  It’s likely that at the time of your diagnosis all the characteristics and pathology leaned mostly towards UC, but this could change over time where it will be possible to differentiate if you have CD or UC.  Treatments such as infliximab or adalimumab (Humira) are able to be used for both conditions, which means they have been approved by the Therapeutic Goods Administration (TGA) for use in Crohn’s as well as ulcerative colitis.

    Since December 2014, Australians living with moderate to severe Ulcerative Colitis have now reimbursed access to REMICADE (infliximab) via the Pharmaceutical Benefit Scheme (PBS). The therapy fills a treatment gap for people whose condition cannot be managed with conventional therapy. People with more severe disease (acute severe ulcerative colitis) were first given reimbursed access to REMICADE in April 2014.

    The ulcerative colitis PBS listings were made possible through the sustained advocacy efforts of Crohn’s & Colitis, clinicians and patients.

  • Can people with IBD donate blood?

    Can people living with Crohn’s disease or ulcerative colitis donate blood?

    Australian Red Cross Blood Service does accept donors with IBD to donate provided they are well and off immunosuppressive medication for a minimum of 4 weeks. The Australian Red Cross Blood service is only able to use the plasma component of the donation for transfusion purposes. Donors presenting to donate are in most circumstances referred to the duty Medical Officer, in order to assess whether they are suitable

    If you would like further information, please contact the Medical Officer at the Australian Red Cross Blook Service on 13 95 96.

  • How often should I have an endoscopy?

    I was diagnosed with UC 18 months ago but realise now I have had symptoms on and off for 25 years. How often should endoscopy be performed to mointor for bowel cancer? Are 6 monthly blood tests enough?

    How often surveillance colonoscopy needs to be done to detect cancer depends on individual risk factors including how much of the colon is involved and the total duration of the disease.

    A family history of colon polyps or colorectal cancer (CRC) also affects the risk.  Gastroenterologists may recommend a yearly colonoscopy for someone in a high risk group (e.g. has chronic inflammation or CRC history), and every three years if in a low risk group (e.g. have extensive disease, but no inflammation on previous colonoscopy, or have left sided colitis).   However for some, where mild dysplasia (signs of a change in the cells that can lead to cancer) has been found, it may be decided to undergo repeat screening after just 3-6 months.   In those with early signs of being at risk of cancer it may be recommended they have surgery.

    It’s important that patients discuss their individual situation with their gastroenterologist.  Unfortunately blood tests alone are not going to pick up what can be seen during endoscopy or in biopsy samples seen by the pathologist.

  • Will my children also develop IBD?

    I suffer with Crohn’s disease and have 2 children who are 6 and 9 years old. Please can you let me know what the chances are of them also developing the disease and if there is anything I can do to reduce this risk?

    We know that genes play an important role in the development of IBD. It is, therefore, unsurprising that people who have IBD sometimes worry about the risk of one of their children also getting the disease. However, research has shown that there is more than one gene involved with more being discovered every year. It is also important to remember that many other factors are involved in the development of IBD. It is, therefore, difficult to give exact estimates of the risk getting IBD if you have a first-degree relative (i.e. a parent, sibling or child) who has either Crohn’s disease or ulcerative colitis.

    Currently, we think the risk of an offspring of someone with Crohn’s disease also developing Crohn’s is probably in the order of 5-10%, while that for UC is a little less. The risk is a slightly higher than this for siblings of someone with IBD, but a little less for parents. We also know that having more than one first degree relative with IBD increases the risk further and that in the very rare situation of both parents having IBD, that there is a considerable increase in risk that any of their children will also develop IBD.

    As with many conditions in which genes play a role, there are some racial groups who are at higher risk. For example, in some parts of the Jewish community the risk is a little higher than those quoted above.

    As to preventing offspring getting Crohn’s, breast-feeding is probably protective and children of parents with Crohn’s should never smoke (when they are old enough!). Possibly passive smoking is a risk but there is very little data on this. If either parent is a smoker then they should probably stop.

    Dr Peter Irving, MD, MRCP, MA, MBBS, Gastroenterology Fellow, Box Hill Hospital, Victoria

  • Is it safe for people with IBD to be vaccinated?

    Is it safe for my son to have the HPV vaccine for he is taking Salazopyrin for his colitis and I’m afraid his immune system won’t be able to cope?

    It is safe for people with inflammatory bowel disease to have this vaccine when taking Salazopyrin.  It is actually recommended for some people with IBD before they commence being treated with other, immunomodulating type medications.

  • Is IBD associated with any other conditions?

    Is IBD associated with any other conditions?

    There are a number of conditions that can develop in association with IBD and include arthralgia (painful joints), Ankylosing Spondylitis, eye problems (e.g. iritis), skin disorders (e.g. erythema nodosum), diseases of the liver/bile ducts and kidneys, as well as various other problems.  Not everybody with IBD develops these conditions.

  • Can hip pain be associated with Crohn's and UC?

    Can hip pain be associated with Crohn’s and UC?

    Joint problems with pain and inflammation can occur in ulcerative colitis and Crohn’s.  It tends to involve the larger joints such as the knees, hips, ankles, wrists and elbows, which may mirror the course of active bowel disease.  Treatment of the latter may bring improvement so that joint symptoms disappear.

    Corticosteroids can be very effective in dampening down any inflammation and pain, so it’s possible that the joint problem has only come to notice since tapering off that medication.  Consult with your specialist if the joint pain and limping continues to be a problem.  Generally the arthritis (inflammation) and arthralgia (joint pain) in inflammatory bowel disease does not result in permanent damage to the joints.

  • Is there a safe dose of prednisone?

    I have been on prednisone for over 2 years now I try and get of it but as soon as I drop my dose below 10mg I cannot control my urgencies. I am concerned that I may cause permanent damage to my health. Is there a safe dose of prednisone?

    Steroids such as prednisolone are very effective in reducing inflammation when there is a moderate to severe flare of IBD, but without other medication in place to help maintain that response, the gradual reduction in dose will often bring a return of symptoms.

    It is preferable to get off prednisone altogether. It’s important that you have your IBD reviewed by a gastroenterologist who may prescribe an immunomodulating drug (e.g. azathioprine, 6-mercaptopurine) that can help get you off prednisone as well as completely settle the IBD and keep you in remission for a longer period.  Only in some circumstances it has been necessary to keep a patient on a low dose of prednisone.

  • Is pain and bloating normal?

    I was diagnosed with Crohn’s 6 months ago and while I no longer have diarrhoea and have put on a lot (too much) weight since being diagnosed, I continue to have constant abdominal pain, severe bloating and gas and fatigue on a daily basis.  While fatigue is ongoing, the pain bloating and gas generally starts around 3pm each day and makes it hard and uncomfortable to finish the working day.  As Crohn’s is relatively new to me, I’m just after some advice if these symptoms are to be the new ‘norm’ for me and should I be thankful my symptoms aren’t as bad as others that I read about, or is there something else I can do to treat the problem?

    These symptoms should not be regarded as the new norm of having Crohn’s.  There could be a number of reasons why you are having these symptoms, including the possibility of a stricture (a narrowed section of the intestine), which is a common problem in Crohn’s that would need to be ruled out by your gastroenterologist.   Sometimes people with IBD have IBS (irritable bowel syndrome) overlay, which in some individuals may be due an intolerance of certain foods including those known as FODMAPs – an acronym for Fermentable, Oligosaccharide, Disaccharide, Monosaccharide And Polyols.   These foods are part of a normal diet, but it is thought that in some people these foods are not well absorbed and move into the large intestine where they ferment, resulting in abdominal pain, bloating, wind and diarrhoea.  A dietitian who has expertise in gastrointestinal disorders and FODMAPs may be able to help identify if there is a problem.   Don’t overlook the GP in trying to find other possible causes and if necessary for tests to be arranged.

  • What are pseudopolyps & how are they treated?

    I have ulcerative colitis (UC) and my last scope I was told that all looked OK and it is no longer severe, but I have a lot of pseudopolyps.  What causes pseudopolyps and how are they treated?

    It’s good news that everything looks OK and your UC is no longer severe.  Pseudopolyps look a bit like a tumour or polyp, but they are merely remnants of tissue, normal or inflamed, that appear between damaged or eroded areas of the bowel lining.  Such damage, which can be permanent, is a result of severe UC and in your case it would have occurred during past episodes of severe, active disease.  There is no need to do anything, but for reassurance speak to your gastroenterologist.

  • How can I reduce diarrhoea?

    I am a  40-year-old man with Crohn’s disease. I have had two resections of my  small bowel and take Imuran and Mesalazine. My doctor tells me my  Crohn’s disease is in remission but I am constantly troubled with  diarrhoea. Is there anything I can do to help reduce the amount of  diarrhoea I suffer?

    Diarrhoea  is a common symptom associated with Inflammatory Bowel Disease (IBD),  including Crohn’s disease and ulcerative colitis. Diarrhoea in IBD may be a result of active disease in the colon where  there is swelling and ulceration (inflammation). The colon therefore  does not absorb the excess water in stools, resulting in loose stools or  diarrhoea. It is imperative to treat the underlying inflammation in  order to relieve the symptoms and to prevent worsening of the condition.  Another common cause of diarrhoea is bile salt irritation. Bile is  produced by the liver and is important for fat digestion. It is usually  reabsorbed in the terminal ileum (the last part of the small bowel). If  the terminal ileum is affected by active Crohn’s disease or if it has  been removed by surgery, excessive bile is released into the large bowel  and subsequently results in diarrhoea.

    A lower fat diet or the use of Questran  (Cholestyramine) may help this. Your specialist can advise on the dose,  which needs to be titrated carefully to avoid constipation. Questran may  interfere with the absorption of some drugs so it is important to check  with your doctor or pharmacist. A number of people may have diarrhoea due to food sensitivity (or  intolerance). This is not the same as food allergy, which is very rare  and involves the body immune system producing antibodies to a specific  food substance.

    In some cases sensitivity results in a reaction to  some food substances although the immune system is not involved. Some of  these culprits may be milk, wheat, excessive fibre and fructose (a  common sugar found in fruit). They may cause abdominal discomfort,  bloating, abdominal pain and diarrhoea. Identifying the problem foods  and reducing their intake may provide relief. Advice from a qualified  dietitian would be worthwhile. Common drugs used to treat IBD can also cause diarrhoea in some people.  These include the 5-Aminosalicylates such as Olsalazine (Dipentum),  Mesalazine (Salofalk or Mesasal) and Balsalazide (Colazide). It may be  possible to change to a different formulation if this is indeed the  cause of the diarrhoea. Your specialist will be able to advise. Iron  supplements can also cause diarrhoea (or constipation) in people with  IBD. The use of antidiarrhoeal medication can be helpful such as Lomotil and  Loperamide (Gastrostop). However it is important to ensure that any  inflammation caused by Crohn’s disease and ulcerative colitis is treated  first.

    Lai Wan, IBD Clinical Nurse Specialist.

  • What is regional colitis?

    I had a routine colonoscopy at age 50 as a normal screening measure.  No symptoms of anything, regular bowel movements and no pain, weight loss or fatigue.  The doctor found mild, chronic inflammation (stated in biopsy report) at the ileocaecal valve and rectum, however elsewhere was said to be grossly normal, no lesions or ulcers anywhere.  The terminal ileum was also stated as grossly normal.  The GI told me not to worry and the biopsy is not indicative of Crohn’s or UC.  He didn’t believe medication was needed as I just have regional colitis.  After reading around I can’t find anything about regional colitis and I’ve read on various forums that it is very dangerous to leave inflammation un-medicated.   Is it possible to have chronic inflammation and not have Crohn’s or UC (by the way, I am and was at the time on no medication of any kind)?  Should I push for medication for the inflammation?

    The term regional colitis means colonic inflammation that is affecting only one or more isolated segments of the colon.  Whilst it’s a term generally reserved for describing localised inflammatory bowel disease (IBD), it could be used to refer to what may be nonspecific inflammation found in the colon. There are several variants of colitis, including other microscopic forms of IBD, but in the absence of a positive biopsy result and no other finding, be guided by the advice given by the GI specialist or seek a second opinion if any ongoing concerns.  Any symptoms that develop should certainly be followed up with the doctor.            

  • What are the risks of surgery?

    I am scheduled to have surgery next month for Crohn’s disease. Are there any risks involved? What are some of the positive and/or negative side effects I may experience?

    There are risks with any type of surgery and can include infection, wound breakdown, respiratory and clotting problems, bleeding, accidental perforation and bowel obstruction.  Fortunately these sorts of problems are not a frequent occurrence.

    The most positive effect from surgery for Crohn’s is that it gives you the chance to be well and back on track with your life.  It can result in remission lasting several months or even years, although you may need to keep taking some form of maintenance medication.

    Negative effects includes feeling a bit sore following surgery and tiring easily, but this is temporary.  In the longer term and depending on which part and how much of the intestine is being removed there may be some functional and absorption problems.  Adhesions can also develop and become a problem.  In stoma surgery there are other considerations.  Make sure you raise any concerns and discuss everything at length with your gastroenterologist and surgeon.

  • Should I take calcium supplements?

    I have Crohn’s disease and have read that it is important to take  calcium supplements when taking steroids to protect me from  osteoporosis. Please can you advise me on how much calcium I should be  taking and whether there is anything else I should be doing?

    Osteoporosis is characterised by compromised bone  strength and is a common side effect of steroid therapy. The main  problem with osteoporosis is the significantly increased risk of  fractures.

    There are many ways to decrease this risk. Adequate  calcium intake is one of these. It is recommended that patients taking  steroids maintain a calcium intake of 1000 to 1500mg per day. This can  be done by including calcium rich foods in your diet, especially dairy  products such as milk, cheese and yoghurt. In general, one will need at  least 3 serves of dairy products per day to provide sufficient calcium.  An example of a serve is 250mL of milk (approximately 285-353mg of  calcium) or one tub of yoghurt (about 390mg of calcium). Your dietitian  will be able to advise you further regarding the calcium content of  various foods as well as low fat or lactose free alternatives. Even so,  many patients find it difficult to maintain adequate calcium intake via  diet alone. In such cases, supplementation with calcium tablets is used. There are many different brands of calcium supplementation available  and you should therefore check with your specialist regarding your  particular dosage.

    Along with calcium intake, vitamin D intake is also  important. The main food sources of vitamin D are fortified margarines,  fortified milks, fatty fish and eggs. However, many patients are unable  to attain an adequate level of vitamin D from dietary sources alone.  Supplementation via vitamin D tablets is therefore often used. Another  method of improving vitamin D levels is via casual sunlight exposure.  This should occur before 10am and after 3pm for periods dependent on the latitude and time of year. However, given the risks of skin cancer,  excessive sun exposure should be avoided. Your doctor will be able to  advise you regarding what level of sunlight exposure is safe for you.

    Participating in regular weight-bearing exercise (at  least 30 minutes each day) will also decrease your fracture risk. Other  simple measures include avoiding excess alcohol and stopping smoking.  Being on the lowest effective dose of steroids is also useful. It is  important, however, that any dose changes be made by your medical  practitioner.

    Finally, certain patients may be eligible for other  therapies such as drugs called bisphosphonates. However, the potential  benefits and risks of these other therapies should be discussed with  your specialist.

    Dr. Christopher Leung, Senior Medical Registrar, Box Hill Hospital, Victoria

  • How do I support someone with IBD?

    I have connected with a friend though an IBD support group. We communicate by text  and internet. She is very sick with Crohn’s disease and has told me she has run out of options. I am very worried for her I don’t know what else I can do to help her I try to be there for her but I wish I could do more for her. Can you suggest what else I can do for her?

    Check with your friend if they are aware of the IBD Helpline service run by Crohn’s & Colitis Australia 1800 138 029.   It may help your friend to actually talk with someone who can draw on many years of experience assisting people with IBD to provide the guidance and support your friend needs.

    Continue with the support you are able to give by expressing genuine care and concern and how you wish you could be there to reassure them, give more support and a comforting hug.  It’s not necessary to feel as though you should find or offer solutions, but ask if they have someone they can rely on or call to provide them with practical support such as helping with household tasks, meals, shopping or even taking them to their appointments with the doctor.  If they don’t have this support, then suggest that they see if they can find out what services and help may be available to them in their local community, or ask that with their permission you will try and find out for them.

    Remember though, the focus shouldn’t always be on them and their Crohn’s.   As a friend they may like to talk about other things going on around them and in their life or your life, which can sometimes be a positive distraction from the illness, even if for a few moments.

  • Is it OK to travel with IBD?

    I have recently been diagnosed with inflammatory bowel disease and am currently well. I am planning to travel around the world with a friend for a year. In particular we want to stay and work in America and Europe. Please can you advise me if I am still ‘OK’ to travel with my condition and if so, how I can buy medications while away and be best prepared?

    The most important thing that an IBD patient should understand is that they should have a normal or very near normal quality of life with few, if any restrictions and they should not be happy until they do! So it is absolutely OK to travel and all you need to do is take some common sense precautions. The first is to make sure you are well (in remission) prior to travelling – going away while you are flaring would make things difficult. Next, you need to make sure that you have an adequate supply of medications for your entire trip as you do need to stay on medicines while you are away. This is really a practical issue but I believe it would be best to have your supply of medicines from Australia.

    Therefore you will need to take some with you initially and have a system worked out on how to get repeats sent over – this will be far easier than getting them abroad which would be expensive, especially in the US, and availability may be different to home. I think this is the most important practicality to sort out before you go. The most important thing is that you keep taking the medicines exactly as if you were at home. A brief letter from your doctor saying that you have IBD may be helpful in expediting sending and receiving of medicine, and also some form of travel insurance would be a good idea. In the event that you do have a flare, it needs to be treated quickly just as if you were at home.

    I would use the IBD websites overseas to find a doctor with IBD experience such as www.ccfa.org in the USA. Contact your home doctor, as they may know someone with IBD experience where you plan to travel. It is difficult to be more specific than this as obviously you’ll be moving around. Careful planning regarding medical insurance and contacts is important in the event that you need medical attention while abroad. Otherwise it makes sense to drink bottled water in less developed areas, as travellers should anyway, just because you can get an infectious diarrhea just like anyone else. With regard to diet there are no particular restrictions, but obviously just avoid anything you notice triggers your symptoms at home. I hope this is helpful to you. Happy and safe travels.

    Dr Miles Sparrow
    Director Inflammatory Bowel Disease Clinical Trials, Dept.of Gastroenterology, Box Hill Hospital, Victoria

  • Can I get travel insurance with IBD?

    I have been refused insurance coverage for overseas travel and was wondering if you can recommend any companies who will cover Crohn’s sufferers.

    There is no one individual company that can be recommended or guaranteed to cover Crohn’s disease, however some companies will give cover for an extra premium based on individual assessment and taking into account various factors including details of the trip, the condition, treatments/medications and medical reports.

    Generally it can be difficult to get cover if a person has been hospitalised in the previous 12-24 months or is on a waiting list for a medical procedure.  Contact Crohn’s & Colitis Australia on 1800 138 029 for further information on case examples and details of insurance companies to approach.

  • What is classified as a flare?

    Am I still in a flare if I am still going to the toilet 5 to 10 times a day? I had a severe flare in 2011 going up to 30 times and was very malnorished and extremly unwell. I now go up to 10 times or more a day and my motions are still only semiformed ie 5 or 6 on the Bristrol scale. Am I still classified as being in a flare and if so what diet options do you recommend?

    Generally a flare-up is recognised as a return of the same symptoms experienced during previous flare-ups, although new signs and symptoms can also appear.

    Sometimes there is no distinguishable return of symptoms, but rather a continuation of symptoms.  This can happen following treatment for a flare-up and as the treatment is reduced or withdrawn, symptoms appear to have only slightly improved or disappear initially and then re-appear soon after.   This usually indicates that the inflammation hasn’t completely settled and so without specialist follow-up and further treatment, the inflammation and accompanying symptoms persist, although they may not be as severe.  However for a small number of people, they are unable to get into complete remission and so they continue to have lingering symptoms, which are usually mild, yet very annoying.

    As a rough guide, having to go to the toilet 2 to 5 times a day (over 24 hours) is considered mild disease activity, whereas 5 to 10 times indicates a moderate attack, and 10 and above is severe.  Bowel motions that are semi-formed, with 5 on the Bristol scale being soft blobs passed easily and 6 being fluffy pieces with ragged edges or mushy, can still be within the normal range for some people.  However going to the toilet up to 10 or more times a day is reason enough to see your gastroenterologist for further review, even in the absence of other signs and symptoms.  There could be other reasons for having to go to the toilet so frequently.  Any dietary changes, if needed, should only be made after consulting with the gastroenterologist.

  • How do I stop wind pains?

    How do I stop wind pains with Crohn’s disease?  How do I get rid of the pain fast?

    This might be difficult to achieve in an instant and requires a broader look at why you are experiencing wind pain.  It could be due to adhesions/scarring, poor absorption/undigested foods and/or a multitude of other causes and then trying the usual solutions for combating wind and bloating to help minimise the discomfort.

    For a more immediate at home remedy, switch from solid foods to liquid for about 24 hours and try to self-massage the abdomen in a circular, clockwise motion in an effort to release any trapped wind.  If it’s an ongoing problem discuss it with your gastroenterologist and seek the advice of a dietitian experienced in GI disorders for guidance on dietary changes that may help and on foods to be avoided that could be making the problem worse.

Complications

  • What are complications of Crohn's and UC?

    Complications in general can be defined as events that make a simple matter more complex. Uncomplicated inflammatory bowel disease involves inflammation of portions of the intestinal tract, of large or small intestine, or both. In uncomplicated disease one would expect improvement especially with appropriate treatment. Lack of improvement, advancement of the disease, or its extension beyond the intestinal tract can be seen as complications.

  • How common are complications?

    Complications are by no means inevitable or even frequent, especially in appropriately treated patients. However, they are sufficiently common and cover such a wide range of manifestations, that it is important for patients and physicians to be acquainted with them. Early recognition often means effective treatment.

  • What are some of the complications of UC?

    What are some of the more important local complications of ulcerative colitis?

    You may be familiar with the complications of peptic ulcers (ulcers of the stomach and duodenum). The same complications can occur in patients with ulcerative colitis. There may be profuse bleeding, perforation (rupture) of the bowel, obstruction (blockage), or simply failure of the patient to respond to the usual medical treatments.

  • What % of patients with UC develop complications?

    The complication rate in ulcerative colitis is somewhere in the 10-20% range. About 80-90% of patients respond satisfactorily to medical treatment and never develop any complications.

  • What does bloating mean in UC?

    A mild degree of abdominal distension (bloating) is common in individuals without any intestinal disease and is somewhat more common in patients with ulcerative colitis. If the distension is severe or of sudden onset, and associated with fever and loss of appetite, one would have to suspect a serious complication of colitis, the so-called toxic megacolon. This is fortunately a rare complication. It is produced by severe inflammation of the entire thickness of the colon and weakening and ballooning out of its wall. This can be compared to the weakening and threatened rupture of a tyre. Treatment is aimed at controlling the inflammatory reaction, restoring losses of fluid, salts and blood. If there is no rapid improvement, surgery may become necessary to avoid rupture of the bowel.

  • What are systemic compliccations?

    Systemic complications of IBD refer to those problems which affect the patient as a whole rather than the bowel locally. Fever is perhaps the most common, and is a reaction of the body to inflammation in general. Severe blood loss can lead to rapid heart action, a drop in blood pressure, and other responses of the circulatory system. At times, other organs of the body which are not part of the intestinal tube, can show abnormalities. These are called extra-intestinal manifestations.

  • What are extra-intestinal manifestations?

     A small percentage of patients with inflammatory bowel disease suffer from inflammation of the distal joints (small joints of fingers, hands, feet, ankles, and knees) or of the central joints (spine and sacroiliac joints). A small percentage of patients suffer from a painful inflammation of the eye called iritis and a small percentage of patients may suffer from erythema nodosum which is a type of skin lesion that is red, swollen and painful. Another skin problem that may affect some patients is pyoderma gangrenosum (punched-out ulcerations).

  • What causes these extra-intestinal manifestations?

    The cause is not known but is believed that all of these manifestations represent disturbances in the immunologic system (the body’s defence system against the inflammatory process or against abnormal products of intestinal metabolism).

  • Can they be treated?

    Most extra-intestinal manifestation respond to treatment directed at the inflammatory bowel disease. For instance, arthritis of the distal joints usually subsides when the intestinal disease is effectively treated with anti-inflammatory drugs, or rarely, by means of surgical removal of the inflamed bowel.

  • How do you know if a health issue is due to IBD?

    When the patient has arthritis or inflammation of the joints, how can the doctor tell that this problem is connected with the intestinal condition?

    This is not always easy, particularly in patients who have severe inflammation of the joints and mild or even absent intestinal symptoms. In most instances, the presence of diarrhoea, or any other symptoms of inflammatory bowel disease, is the most important clue to the correct identification of the joint problem. Also, the joints in this case are usually not as severely affected as they are in rheumatoid arthritis and do not undergo destructive changes. It is usually possible to make sure what type of inflammation one is dealing with in any given patient.

  • Can the liver be affected in IBD?

    A small number of patients have disturbances in liver functions and structure. It is believed that these liver problems also represent disturbances in the body’s immunologic or defence systems and are not fully understood.

  • Does Crohn's have different complications to UC?

    Much of what has been said above applies to both ulcerative colitis and Crohn’s disease. Because Crohn’s disease can affect any portion of the intestinal tube, and because as a rule the entire thickness of the intestinal wall of the involved segments is diseased, additional problems may arise, such as fistulas.

  • What are fistulas?

    A fistula is an abnormal passage such as from one loop of intestine to another. Such passages may also lead to other internal organs or to the skin. Fistulas are relatively common in Crohn’s disease and rare in ulcerative colitis. Because inflammatory process involves the full thickness of the intestine in Crohn’s disease, the usually smooth outside surface of the intestinal loops becomes rough and sticky and adheres to neighbouring structures. The inflammation may spill over into adjacent areas and lead to the production of abnormal passages or fistulas. Fistulas may lead to abscesses (collections of pus). In many instances this calls for a surgical incision and drainage and other appropriate measures. If the fistula is small, medical treatment alone may be sufficient to control it and bring about its closure and healing.

  • Can Crohn's disease cause malnutrition?

    This depends on the extent and severity of the disease. If the small segment of intestine is involved and treated promptly and appropriately, malnutrition should not develop. If the disease is extensive and of long duration, malnutrition of varying degrees can develop.

  • What can be done to combat malnutrition?

    A combined approach of medical treatment and, if necessary, surgical treatment of the inflammation, together with replacement of nutrients is usually indicated. If patients are deficient in vitamin B12, this vitamin can be given by injection. If there is a deficiency in iron, this mineral can be given in tablet, or liquid form or by injection. Nutritional supplements can be given in the form of concentrated nutrient solutions. Hospitalised patients can be given intravenous fluids, sometimes in the form of Total Parenteral Nutrition (TPN) where all nutrients are supplied by the intravenous route.

  • What are the most common complications in Crohn's?

    Partial obstruction of the intestine is probably the most common complication. Affected patients may complain of severe crampy pain in the mid-abdomen. They may note that the abdomen gets distended or bloated at the same time. Vomiting occurs with severe obstruction.

  • Does partial obstruction always lead to surgery?

    No. Only in severely obstructed patients is surgery necessary. In many less severely obstructed patients, medical treatment alone will reverse the partial obstruction, relieve the symptoms, and permit the patient to eat normally again.

  • Are there any children-specific complications?

    When inflammatory bowel disease affects children or adolescents, growth may be retarded or there may be a delay in the onset of puberty. It is important to recognise the correct cause of delayed growth and development because proper treatment of the inflammatory bowel disease will usually restore growth and maturation patterns.

  • Are complications the same in kids as in adults?

    For unknown reasons the extra-intestinal or systemic manifestations may predominate in children and even overshadow the intestinal symptoms, thus making diagnosis more difficult. It is therefore of greater importance to keep close watch on youngsters who fail to grow or thrive, feel sick, have fever, and complain of general malaise and weakness, for these may be systemic manifestations of inflammatory bowel disease.

  • Does IBD affect a young person's emotional state?

    When a youngster develops inflammatory bowel disease and suffers from diarrhoea, bleeding, fever, etc. doesn’t it affect his or her emotional state?

    It frequently does, as does any serious illness that may affect any person, but youngsters may be less able to cope with serious illness.

  • Can IBD lead to cancer?

    Cancer is very rare in Crohn’s disease. In long standing ulcerative colitis involving most or all of the colon, there is an increased frequency of developing cancer compared to the normal population. However, the increased frequency is still relatively low and patients can be identified who are higher risk. If the risk of cancer is considered high, surgical resection can be recommended.

  • How can I avoid serious complications?

    With proper treatment, the majority of patients do well and do not develop any serious complications. Early recognition, proper treatment, good nutrition and a positive outlook are the most important deterrents to the complications of inflammatory bowel disease.