A new diagnosis of Crohn's or Colitis can be scary and overwhelming. We are here to let you know that you are not alone. Below is some information on your recent diagnosis. It can be a lot to take in so it may be helpful to talk to someone who understands, if you would like to ask question or speak with someone about your recent diagnosis make sure to call our helpline on 01 531 2983.
So you’ve been diagnosed with Crohn’s disease or ulcerative colitis. What next?
- Ask your doctor about your diagnosis and the plan for treatment of your disease.
- Ask about the location of your disease and how severe is your disease?
- How long should you expect to wait to get relief from symptoms?
- What will be done if this treatment does not achieve the desired results?
Familiarise yourself with the symptoms that are associated with your diagnosis and put a plan in place for managing these symptoms so that you can live as full a life as possible until you achieve remission. Here is where the IBD nurse specialist plays a vital role. If there is an IBD nurse specialist in your hospital, get their contact details and call them for advice if you are experiencing troublesome symptoms.
Contact the us for advice and support and a friendly ear if you are having a tough time. We are experienced in dealing with the same issues that you are and may be able to give you some practical advice in terms of managing your symptoms or if you are experiencing side effects from your drugs.
Most importantly do not believe everything you read on the internet. Probably the biggest myth that exists about IBD is that you will spend the rest of your life having to rush to the bathroom. Whilst in some cases there can be symptoms that are stubborn and difficult to manage, the majority of patients achieve good periods of remission in between flares and are not tied to the bathroom.
If you find that you are having to use a bathroom urgently, become a Crohn's & Colitis Member and get your No Waiting card. This is invaluable for those times when you see the ‘toilets for customers only’ sign, or to get to the top of a long queue in public bathrooms. This will reduce your anxiety when you are out.
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What is Inflammatory Bowel Disease?
Inflammatory Bowel Disease (IBD) is the name used for a group of disorders that cause inflammation of the intestine. It is a term used for conditions known as ulcerative colitis, Cohn's disease, and indeterminate colitis.
IBD is a chronic (long-term) condition characterised by periods of relapse (flares) and periods of remission (being well).
Ulcerative colitis affects only the inner lining of the large bowel (colon), however, Crohn's disease can affect any part of the intestine from the mouth to the anus and may involve the full thickness of the intestine wall.
Although ulcerative colitis and Cohn's disease are different conditions, they share many similarities and in up to 10% of cases, characteristics of both conditions are present and this is called indeterminate colitis or inflammatory bowel disease unclassified (IBDU).
Cause of IBD
The actual cause of IBD is unknown but a number of clues exist. Genetic factors play a role; different races have different incidence rates of IBD and clusters of IBD occur in families. Other possible causes include viral or bacterial infection and factors related to the immune system. Environmental factors are also known to have a role. There is some evidence that people with IBD may have an abnormal inflammatory response to normal intestinal bacteria (also known as the microbiome). The immune system works to protect the body, however, in IBD it appears to be overactive and this overactivity is associated with inflammation.
Psychological factors may cause a flare in people with a known diagnosis of IBD but there is no evidence to show they cause IBD.
Irritable Bowel Syndrome (IBS)
IBD and IBS are two very different conditions albeit with similar symptoms and the two conditions are often confused. IBS is more common than ID but there is no clear evidence of inflammation or ulceration of the bowel in IBS.
There are tests to distinguish between IBD and IBS, some of these can be carried out by your General Practitioner, while you will need to see a specialist for others. Long-term specialist follow-up is recommended for patients with IBD but not for patients with IBS.
It is estimated that up to 40,000 people in Ireland are living with IBD. It affects men and women equally. It is most commonly diagnosed between the ages of 18 and 40 but can present for the first time at any age.
The Gastrointestinal Tract
The gastrointestinal tract is a hollow tube that runs from the mouth to the anus.
It's approximately eight to nine meters long. Its function is digestion and absorption of nutrients and storage and passage of waste, Your doctor or IBD Nurse can show you on this diagram the location of your disease activity.
When you visit the doctor, you will be asked about your symptoms. Many people find it embarrassing or difficult discussing symptoms of IBD. Keep in mind that your doctor will ask about:
Bowel Motions - Number per day and night, type, presence of blood/ mucous. Do you ever have to rush to the toilet (urgency)? Have your bowel habits changed? Do you have diarrhea or are you constipated? Do you ever have difficulty with bowel control or incontinence?
Abdominal Pain - What makes it better or worse? Is it affected by eating??You may also be asked if:?
- Do you suffer from tiredness/lack of energy??
- have you lost any weight?
- has your appetite changed?
People with IBD generally have few symptoms when the disease is in remission (not active).
People with a flare of ulcerative colitis may experience some or all of the following symptoms:
- Frequent passage of loose stool, sometimes with blood or mucous, or urgency, often needing to rush to the toilet suddenly or without warning
- Abdominal Pain
- Tiredness/lack of energy
- Occasionally, people may experience weight loss, loss of appetite or fever
As Crohn's disease can affect any part of the gastrointestinal tract, the symptoms of Crohn's disease depend on the part of the gastrointestinal tract affected by the disease.
The main symptoms of Crohn's disease are:
- Diarrhoea, occasionally with bleeding
- Abdominal pain - this can be caused by active inflammation or it maybe due to strictures (narrowing of the intestine) caused by Crohn's disease
- Weight loss
- Bowel blockage may occur and presents as abdominal pain, bloating and vomiting
- Abscesses (collections of pus)
- Fistulae, which are connections or shortcuts between the bowel and the skin or between the bowel and other organs such as the bladder or the vagina, can develop in the presence of Crohn's disease. Skin tags can also develop around the anus
Other IBD Symptoms
IBD can also be associated with problems outside the gastrointestinal tract.
It is important to remember that these are far less common than those listed previously and affect the following:
Joints - Inflammation of the large and small joints of the arms, legs, pelvis and spine. This can cause pain, swelling and restriction of normal movements in the joints affected. (arthritis, sacro-ileitis)
Skin - Painful, red skin especially on the shins (erythema nodosum, pyoderma)
Eyes - Painful, red, gritty watery eyes (uveitis, iritis, conjunctivitis)
Liver abnormalities due to involvement of the cells (chronic active hepatitis) or bile ducts (primary sclerosing cholangitis)
What happens when you first see your Doctor?
When you visit your doctor, you will be asked about your symptoms.
Your doctor will examine your abdomen and may also examine the rest of your body for any changes in your eyes, skin or joints.
Your doctor may also examine your anus for skin tags, fistulae, abscesses or bleeding. Following this consultation and examination your doctor will decide what tests are needed.
These may include:
- Stool sample analysis to rule out infection as a cause of your symptoms
- Faecal calprotectin stool test.?Faecal calprotectin is a substance your body releases when there is inflammation in your intestines. This is an important test to check the level of inflammation in your bowel. It can be used to monitor your disease activity over time. It is also used to check if symptoms such as pain and diarrhea are caused by inflammation.
- Blood tests - to check for inflammation and other abnormalities that can be caused by IBD
- Radiology; X-ray, small bowel follow through, computerised tomography (CT), magnetic resonance imaging (MRI)
- Endoscopy; colonoscopy, sigmoidoscopy
Scans and Tests
This is an X-ray of your abdomen, which can be useful to check for inflammation and dilatation (widening of your bowel).
Small bowel follow through
A small bowel follow through is done to help the doctors assess your small bowel which cannot be reached with endoscopy. You will have to fast before your test so that your stomach is empty. In the X-ray department you will be asked to drink a chalky drink called barium. As it travels through your stomach and small bowel, several X-rays will be taken. Any areas that are inflamed will be noted as the barium is going through and will enable your doctor to accurately locate areas affected by disease.
CT scans are pictures taken by a specialised X-ray machine. The machine circles your body like a doughnut, and scans an area from every angle within that circle.
It then relays that information to a computer, which generates a collection of black-and-white pictures, each showing a slightly different "slice" or cross- section of your internal organs. This scan is more detailed than a standard X-ray.
You may have to fast prior to the scan and you may have to drink a special solution called contrast medium, which shows up on the scan and can help outline certain internal organs.
MRI is similar to CT but does not use X-rays. MRI uses magnets to send radio waves through the part of the body being examined, taking cross-sectional pictures. A computer puts the pictures together forming images of internal organs. In IBD, MRI is especially useful in looking for fistulae, both internal and external and at the small bowel. You may be asked to drink a special drink prior to the scan depending on what area of your gastrointestinal tract your doctor wants examined. The MRI scanner can be noisy, and looks like a tunnel.
Colonoscopy and Sigmoidoscopy
Colonoscopy and sigmoidoscopy allow your doctor to look directly into the large bowel via the anus.
Endoscopy is performed using an endoscope which is a flexible tube with a light and a camera which transfers images from your bowel to a television screen. Your doctor can also use this instrument to take biopsies (tissue samples) from your bowel wall.
Colonoscopy is an examination of the large bowel from the rectum to the cae-cum. Sometimes your doctor endoscopist will be able to look at the lining of the terminal ileum, which is where the small bowel joins the large bowel. It is important that the bowel is empty for the test so that the endoscopist can get good views of the lining of the bowel. You will be prescribed a special drink to take on the day before your examination to ensure this. You will be given sedation for the test, which takes approximately twenty minutes. You will be asked to rest in the recovery room for about an hour and you will be given light refreshments before you are discharged home.
Sigmoidoscopy is an examination of the left side of the bowel. You will be given an enema on arrival in the endoscopy suite to clean out the lower part of the bowel. You can choose whether to have sedation for this test.
If you opt not to have sedation, you may experience some mild cramping or bloating during the test. You will be able to leave immediately after the test.
The doctor or nurse will give you preliminary results of the tests before you are discharged. If biopsies are taken, the results of these will be given at your next out patients appointment.
Capsule Endoscopy Is carried out with a tiny pill sized camera that is swallowed and takes pictures of your digestive tract. These are sent to a special recorder worn around your waist and reviewed by a specialist. This test is used in certain cases to check for inflammation in the small bowel. You may need to be referred to a different hospital for this test if it is not available in the hospital you attend.
In the case of acute attacks or repeated flares, your doctor may decide to repeat tests to re-evaluate your disease and to help decide on further treatment strategies.
Treatments for IBD
Following your investigations, when a diagnosis has been reached, your doctor will decide how best to treat YOUR IBD. Things such as the severity and location of disease will be considered prior to choosing a treatment. Your doctor will also take into consideration how you are coping with your symptoms.
It is important to remember that IBD affects everybody differently and your doctor may have to try a number of treatments before finding what works for you.
Medications used in IBD
Steroids, oral (prednisolone) or injected (hydrocortisone) may be used to treat acute attacks. Steroids are not a long term treatment for IBD. They are usually given over 8 weeks and the dose is reduced gradually until the course is finished. It is important to finish the course as instructed by your doctor and not to stop taking steroids abruptly. This is to allow your body to start making its own natural steroids.
It is important to take a calcium supplement, when taking steroids as your bones can be weakened by steroid use.
Steroids can be very effective for your bowel symptoms but can cause side effects such as water retention, muscle weakness, eye and skin changes and mood swings. They may also cause high blood pressure, stomach ulcers, osteoporosis (weakening of the bones), and high blood sugar. If you are worried about any side affects you may be experiencing, you should contact your doctor or IBD Nurse who will be able to advise you.
This group of medications include mesalazine (Asacolon, Pentasa, Salotalk, Mezavant), and sulphasalazine (Salazopyrin).
They are also called 5-ASA medications. Your doctor will choose the medication most suitable for your disease. These medications reduce the inflammation in the colon and help to heal the inflamed intestine lining. They are useful in treating mild to moderate flare-ups and are used to keep your disease in remission.
Azathioprine and 6-Mercaptopurine
These medications are often used if you need repeated courses of steroids or if your symptoms return when you reduce your dose of steroids. They may also be prescribed if you have had surgery for Crohn's disease or if you have Crohn's disease in more than one area of your gastrointestinal tract. They are also used to work with other treatments to increase medication levels in your system.
You may also hear your doctor refer to these drugs as steroid sparing drugs, immunosuppressants or immunomodulators.
Immunomodulators can take up to four months to become fully effective and for this reason you may be prescribed them in conjunction with a course of steroids or sometimes even when you are feeling quite well as there is evidence that these medications are useful in preventing a recurrence or flare of your disease.
They are associated with side effects such as allergic reactions, inflammation of the pancreas gland (pancreatitis), liver problems and a reduction in the white cells in the blood which can increase your risk of infection. When you are on immunomodulators, you will need to have blood tests done regularly.
Your doctor or IBD Nurse will give you written information prior to starting these medications and discuss the timing of blood testing.
Methotrexate is another immunomodulator, sometimes given to patients not responding to, or intolerant of azathioprine or 6-mercaptopurine. It is given as an injection and sometimes in tablet form once weekly (preferably on the same day).
As with all immunomodulators it can lead to the development of infections, it can also cause problems with white blood cells which may increase your risk of infection. Rarer side effects include lung and liver damage.
Nausea and vomiting are the most common side effects of this drug, if you are suffering from nausea and vomiting, let your doctor know and they will be able to prescribe anti-nausea medication for you.
As methotrexate can reduce folic acid, which is needed for actively growing cells, it is necessary to take folic acid supplements/tablets.
Methotrexate should not be taken if you are pregnant or plan to become pregnant. It is important to use a reliable form of contraceptive while on methotrexate and for three months after stopping it, as methotrexate has been linked to serious birth defects and pregnancy complications.
Ciclosporin is an immunosuppressant drug which is given intravenously to patients with severe Ulcerative Colitis, who are not responding to intravenous steroids. This drug may be suggested if you have had TB or cancer in the past.
People on this drug are at increased risk of developing infections. It is also associated with high blood pressure and change to kidney function. You will need to have blood tests to monitor drug levels closely.
IF YOU HAVE BEEN PRESCRIBED DRUGS THAT CAUSE IMMUNOSUPPRESSION YOU SHOULD HAVE THE YEARLY SEASONAL FLU VACCINE AND THE PNEUMOCOCCAL VACCINE
Biologic drugs are made from proteins. Biosimilar medications are a newer version of original biological drugs and work in the same way.
Before starting biologic drugs, your doctor will organise for you to have a chest X-ray, and test for tuberculosis (TB). You will also need to have some blood tests to check if you have been exposed to certain viruses.
The side effects of these drugs include allergic reactions, infections and are similar to those experienced with immunomodulators. Some people are at increased risk of developing heart problems on biologics, because of this you should always tell your doctor if you have had heart problems (regardless of your age), and they will arrange for any tests that may be necessary prior to starting the drug. Biologics can also increase your risk of certain cancers such as skin cancer and lymphoma.
Infliximab is given as an infusion via a drip at week 0, 2 and 6, (induction). If your symptoms respond you will continue this medication. The timing and dosing of Infliximab will be decided by your doctor and depends on a number of factors such as the level of drug in your system and how your symptoms respond. This can change over time. You will have blood tests on each visit to the hospital and you will be asked if you have any infection or are on antibiotics. Infliximab can also be used, if you are having a severe flare of your ulcerative colitis which is not responding to intravenous steroids.
Adalimumab is given as an injection every two weeks. You will be taught how to give yourself the injection at home. The dose and frequency may be changed under the guidance of your doctor.
Golimumab is given as an injection every two weeks for the first month and every four weeks after that. You will be taught how to give yourself the injection at home.
Ustekinumab is given as an infusion/drip and then followed by 8 weekly injections which you will be taught to give at home.
You should never give yourself your biologic injection if you have an infection or are on antibiotics without consulting your doctor or IBD Nurse.
Vedolizumab is given as an infusion via a drip in the hospital at week 0, 2 and 6, (induction). If your symptoms respond you will continue on this medication. The timing and dosing will be decided by your doctor and will depend on how your symptoms respond to the medication.
If you are on immunomodulators when starting biologics, your doctor will discuss with you whether you should continue them.
It is important to attend your doctor regularly and have regular blood tests while on biologics.
Tofacitinib is a treatment for active colitis. You may be prescribed Tofacitinib tablets if you have had an inadequate response, lost response, or were intolerant of other treatments. At high doses this drug can increase your risk of developing a blood clot. Your doctor will prescribe an injection to prevent clots.
IF YOU HAVE BEEN PRESCRIBED DRUGS THAT CAUSE IMMUNOSUPPRESSION, YOU SHOULD USE SUNSCREEN AND AVOID LONG PERIODS IN THE SUN
Antibiotics may be used for acute attacks of Crohn's disease, particularly if the anus is affected (perianal disease).
You may be asked if you are interested in taking part in a clinical trial for new drugs for IBD. The goal of clinical trials is to determine if a new treatment works and is safe. Clinical trials can provide access to the newest treatments for IBD. If you are interested in clinical trials your doctor or IBD Nurse will be able to advise you if there is a suitable clinical trial available for you and refer you to the Clinical Trials Co-ordinator.
It is important to take your medication as prescribed by your doctor. It is also important to stay on your medication, even when you are well as the aim of treatment of IBD is to keep the disease in remission and prevent flare ups.
There may be many changes in your medication regime during the course of your IBD and this can be confusing at times. If you are ever unsure or confused about medication changes or combinations, you should contact your doctor or IBD Nurse, who will be able to guide you.
Surgery involves removal of the large bowel and formation of an ileostomy (stoma). The small bowel is brought out onto the abdomen and contents empty into an ileostomy appliance (stoma bag). You will be referred to a specialist Stoma care Nurse who will give you advice and support on adjusting to and dealing with life with a stoma. They can organise for you to meet others who are living full lives with a stoma. The formation of an ileostomy should not interfere with normal daily living. The surgeon will decide whether it is appropriate to remove your rectum (lower part of the large bowel) at this stage or whether it is better to leave it in place for removal at a later date.
Your surgeon and IBD doctor will discuss whether you are a suitable candidate for pouch formation. In some cases it is possible to form an internal pouch from the remaining small bowel to function as an artificial rectum. This operation is usually done in stages to allow the newly formed pouch to heal and when all stages are complete you will be ileostomy free. People who have a pouch will have three to five bowel motions per day and sometimes have to go to the toilet at night.
Surgery may be necessary:
- To remove parts of the large or small bowel which are very diseased
- Deal with narrowings (strictures) or fistulae of the bowel
- Drain abscesses (sometimes under CT scan or ultrasound guidance)
Nutrition and Inflammatory Bowel Disease
A key component in the treatment of IBD is a healthy diet. A balanced diet of foods from all food groups (grains, dairy, fruits and vegetables, meat and meat substitutes) is recommended to ensure an adequate supply of carbohydrates, proteins and fats. This balanced diet gives the body the nutrients needed for daily growth, and allows the body to repair damage and fight illness.
You will generally know best which foods you tolerate and which foods you must avoid. However, in general many people find fatty, spicy and raw foods more difficult to digest.
Diet and nutrition problems arise in Crohn's disease more commonly than in ulcerative colitis and usually consist of the following:
- Iron, vitamin B12 and protein deficiency due to reduced absorption if the small bowel is affected
- Increased nutritional requirements due to fever, infection and inflammation
Some people with IBD feel "full" easily, especially if there is bowel inflammation or narrowing. In this case, eating more frequent but smaller meals is often helpful.
Nutritional supplements between meals can improve low energy levels and supply needed nutrients. It is very important to note that meals should not be missed
If your disease is severe, you may be advised to take additional nutritional supplements (along with medications) to restore the balance of nutrients and to help prevent weight loss.
In rare cases, patients may be unable to eat sufficiently or to eat at all, although this is usually only temporary. In these instances, feeding can be achieved using a narrow feeding tube passed through the nose and into the stomach (enteral nutrition). Enteral nutrition is sometimes used as a treatment, together with standard medications, as it gives the bowel a chance to rest and may relieve pain. An alternative is total parenteral nutrition (TP), in which nutrition is given intravenously.
For further advice on diet you should consult your doctor, specialist nurse or dietician.
Living with IBD
Being told you have a long-term chronic condition can be overwhelming, however having a good understanding of your disease and how it can be treated can help. It can be difficult sometimes to accept the long term and unpredictable nature of IBD.
Embarrassment regarding the nature and symptoms of IBD can lead to reluctance to talk about your condition. Family and friends will want to help and support you. It is up to you to decide how much information you would like to share. Try and think of the things they should be aware of to understand your condition and to help you cope. It is important not to let your IBD isolate you.
Smoking and IBD
Smoking is not advised.
In some cases it can increase the number of flare-ups of IBD and can interfere with how certain drugs work. Talk to your doctor, IBD Nurse, or pharmacist who can advise you on how to give up smoking.
Alcohol and IBD
Some people's symptoms are made worse by alcohol. Enjoy only in moderation. Avoid alcohol totally if you are taking metronidazole (Flagyl) for Crohn's disease.
Bowel Cancer and IBD
People who have ulcerative colitis or Cohn's disease affecting the colon (large bowel), particularly the entire colon, have an increased risk of developing bowel cancer. Eight to ten years after you have been diagnosed, you will be invited for regular colonoscopies to check for precancerous changes. This is called surveillance. During the colonoscopy, biopsies will be taken and analysed in the laboratory.
Travel and IBD
It may take a little more planning to go on trips when you have IBD but don't let that stop you from travelling.
It may be a good idea to discuss your trip with your Doctor or IBD Nurse prior to travelling. If you plan to holiday within the EU you should get your European Health Insurance Card. This is available from your local HSE office or online at www.ehic.ie. Make sure your travel insurance covers IBD related problems should they occur while you are travelling.
Ensure you have an adequate supply of medications to last throughout your travels, allowing for delays.
If travelling by air, ask for an aisle seat near the toilets.
As with all people travelling, if you are travelling to an area where it may be difficult to obtain medical advice, you should eat only well cooked food and use bottled water for brushing your teeth and drinking.
Always carry your medication in your hand luggage in case there is a problem with your checked in luggage. Your doctor can give you a letter describing your condition and the medications being used to treat it. It is also a good idea to carry a copy of your prescription.
Sex and IBD
Many people enjoy a normal sex life with IBD; however IBD can cause decreased or loss of libido (sex drive) from time to time. Physical exhaustion during a flare or depression may also cause a decrease in libido. Medications such as steroids can have an impact on libido due to hormonal imbalances.
During a flare, you may feel too unwell to have sex. You may feel too self-conscious to enjoy sex due to scarring from surgery or stoma.
You may fear that you will be incontinent during intercourse.
If you have Crohn's disease that affects your anus (perianal disease), intercourse may be painful or uncomfortable.
These feelings are normal, your sex drive will return as you feel better. If you are worried about any of these speak to your IBD nurse or doctor.
In acute flare-ups, your periods may be affected.
During flare-ups, particularly if diarrhea is a problem, the oral contraceptive pill (the Pill) may be less effective and barrier methods of contraception should be used.
Pregnancy and IBD
Fertility is not normally affected in people with IBD.
Fertility may be affected if you have had pelvic surgery. Your surgeon will discuss this with you if pelvic surgery is proposed.
Men who are prescribed sulfasalazine (Salazopyrin) may have a reduced the sperm count. This can be reversed within two or three months of stopping the drug. Your doctor will change you to mesalazine which does not reduce the sperm count.
Most people remain well throughout pregnancy. If you conceived when your IBD was active or you suffer flares of your IBD during pregnancy, your baby may be born prematurely or have a low birth weight.
It is a good idea to plan your pregnancy for when you are well. If it is something you are thinking about it is advised to have some preconception counselling with your IBD team prior to conceiving.
When you find out you are pregnant, do not stop your IBD medications without contacting your doctor.
As with all women planning a pregnancy, women with IBD should take Folic Acid supplements before conception and for the first twelve weeks of pregnancy.
It is important that your IBD is kept in remission while you are pregnant as it is believed that a flare of IBD can do more harm to the baby than the medication used to keep IBD under control.
The publication of this patient information was made possible through an educational grant by Tillotts Pharma Limited. Written by Mary Forry, Inflammatory Bowel Disease Clinical Nurse Specialist; Dr Jan Leyden MB, MRCPI; Professor Stephen Patchett MD, FRCPI Beaumont Hospital, Dublin
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