If you have Crohn’s Disease or Ulcerative Colitis (the two main forms of Inflammatory Bowel Disease - IBD) – you are likely to be prescribed medication as part of your treatment. This information sheet looks at some of the most common questions asked about Crohn's and Colitis medicines and how to take them.
Initially, the aim of drug treatment will be to reduce the inflammation in your gut to give you relief from symptoms and bring about remission (a period of good health). This is sometimes called induction therapy. Once your condition is under control, your doctor will usually continue to prescribe drugs to help maintain remission and prevent a relapse. This is called maintenance therapy, which is often needed on a long-term basis.
Drugs don’t work the same way for everyone, so it is not always possible for your doctor to predict which treatment will suit you best. It is important to make sure you find a medication that works for you. For more information about the drugs used to treat IBD, see our individual information on Adalimumab, Aminosalicylates (5-ASAS), Azathioprine and Mercaptopurine, Biologic Drugs, Infliximab, Methotrexate, Steroids (corticosteroids), Vedolizumab and Other Treatments for IBD.
Taking medicines every day made me feel like I had some ammunition to fight the disease with. It’s just a part of my routine now, like putting my wristwatch and glasses on.
Linda
Living with Crohn's
Combination therapy is often used on a long-term basis to help certain medicines work more effectively. For example, some studies have shown that people who take an immunosuppressant such as azathioprine with their biologic drug are more likely to stay in remission than people who take a biologic alone. However, taking more than one medicine can also increase the risk of side effects.
When I reflect back, I think I would have benefitted from more information about certain drugs. I feel the more you know in advance, the more prepared you are to deal with any setbacks when they happen.
Angela
Living with Crohn's
For most prescription medicines, such small differences are unlikely to create any problems. Whether you are prescribed the branded medicine or a generic version of a drug, your medicine should have the same therapeutic effect as long as your dose contains the same amount of active ingredient.
However, for a very small number of drugs, the differences in formulation may be more significant. For example, some of the different brands of mesalazine work in a slightly different way. For this reason your doctor may decide to prescribe a particular brand rather than the generic version.
There also may be more significant differences in formulation in biosimilar medications for biologic drugs. Infliximab (brand name Remicade) was the first biological drug to be used in Crohn's or Colitis, and the patent expired in 2015, meaning other companies can now produce their own versions of the same drug. Two biosimilars are currently available for infliximab, called Inflectra and Remsima. However unlike ‘chemical’ drugs, biologic drugs are made by living cells, meaning their manufacturing process is much more complicated. Each manufacturer has its own unique cell line and process – so the final products can never be exactly identical because they are made using different cells. Hence we have biosimilars, which are similar but not identical to the original biological drug.
In order for a biosimilar to be approved for use, it has to meet strict standards to show it is as safe and effective as the original biologic drug. For more information on biosimilars see our information on Biologic Medicines.
Taking a drug topically means applying it directly to the affected part of the body. This can mean that the drug works more efficiently. Topical treatment also tends to cause fewer side effects, as the drug does not significantly enter the bloodstream and so does not affect other parts of the body as much.
In Crohn's and Colitis, topical treatment is usually most appropriate when the inflammation is in the rectum (a condition often known as proctitis) or near the end of the colon. The way of delivering topical treatment to inflammation in these areas is to use a suppository. This is a small bullet-shaped capsule of the drug in a waxy substance that will dissolve at body temperature. The suppository is inserted directly through the anus (back passage) into the rectum. As it dissolves, it releases the drugs in the right area.
Another way of getting a drug directly into the rectum and colon is to take it as an enema. These can come in a liquid or foam form, and are put into the rectum through the anus using a specially designed applicator. Foam enemas are often easier to retain than liquid enemas so can be particularly useful at the beginning of a flare-up, when the gut is most sensitive. Liquid enemas can usually travel further along the colon so will reach more of the inflammation, especially if taken just before lying down. Both steroids and aminosalicylates (5-ASAs) are sometimes given topically, using a suppository or enema.
If the inflammation is on the surface of the skin, an ointment or cream may be helpful. An immunosuppressant called tacrolimus is available in ointment form and may be used to treat perianal Crohn’s.
Some medicines are injected subcutaneously (under the skin, usually in the thigh or stomach), intramuscularly (into a muscle) or intravenously (into a vein). This is because the digestive system would break down and destroy the drug if taken orally. Intravenous injections are often given through a drip in your arm using an infusion (a dilute form of the drug).
Biologics such as infliximab and adalimumab cannot be taken orally, so are always given by injection or infusion. Steroids and some immunosuppressants may be injected intravenously to get a quick response in people having a severe flare-up.
Getting into a routine of remembering to take your medicines every day can be challenging. Initially when your drugs have an immediate effect on your symptoms, you may find it easy to remember to take your doses exactly as instructed. However once you feel better and your illness is on your mind less, you may be less focused on taking your medication and start to forget the odd dose. Or, you may be tempted to stop taking your medication altogether, thinking you don’t need it now that you don’t feel so ill. A lot of people get fed up with having to take pills every day, maybe even several times a day – or just feel they would rather do without such a regular reminder of their Crohn's or Colitis.
These are understandable feelings. However Crohn's or Colitis cannot be cured, and many studies have shown that maintenance therapy (continuing to take medication even when you are well) does reduce the chance of a flare-up. Repeated flares not only cause ongoing, troublesome symptoms, but increase the risk of irreversible damage to the intestines which may lead to complications such as narrowing (strictures), or abscesses. Continuing your maintenance therapy can also mean that you are less likely to need to move on to taking additional or stronger drugs. If you stop your treatment and experience a flare-up, there is a chance that your medication may not work as well, or at all, when you restart it. In this case, stronger drugs or even surgery may be necessary to control the inflammation.
It is very important to be honest with your IBD team about whether you are taking your medicines, as failing to keep them informed could have a negative effect on your care. They will understand your concerns and may be able to discuss alternatives. If you would like to stop or reduce treatment, this may be possible on advice from your doctor if your condition is mild and limited to a small part of your digestive system, and an endoscopy shows disease healing.
If you do miss taking a dose, the Patient Information Leaflet that comes with your medication should tell you what to do. If you can’t find this, check with your doctor or nurse.
It is important to take your medicines at the same time each day. If you are prone to forgetting things like taking tablets, try making it part of your daily routine, for example taking them with a meal, if your medication can be taken with food.
Additionally, some medicines must be taken in particular ways – for example, at particular times of day, on an empty stomach, or with or after food. If your lifestyle makes it difficult to for you to do this, try discussing it with your doctor. It may be that some compromise or alteration in the dose is possible. For example if you are taking 5-ASAs, you may be able to change to taking the full dose just once a day, which some people find easier.
Your medication can be prescribed by your gastroenterologist, your GP or your IBD nurse. You may be feeling that as someone who has lived with an ongoing medical condition for some time, perhaps years, you are now quite an expert on what works for you. As a result, you may feel you would like to take a more active part in your treatment and be able to adjust your own medication when your symptoms begin to get worse or better. If so, discuss this with your doctor or IBD specialists. You may find that they are happy to include this idea in a plan for what to do in the event of a flare-up.
I dispense all my tablets for the week into a pill dispenser with the days of the week on. They live on my bedside table so they’re the first thing I see upon waking and the last thing before I go to bed, so I don’t forget. I also set alarms on my phone to remind me.
Sharon
Living with Colitis
It is worth talking to your doctor or IBD nurse about any worries you have about side effects or the amount of medicine you are taking. They may be able to reassure you or suggest changes that you find helpful. Sometimes a change in brand or form of drug would suit you better. With some drugs, taking them at a different time of day can make a difference – for example taking steroids before 11am can help reduce side effects as this follows the natural rhythm of steroids in the body.
The MHRA has a Yellow Card scheme to encourage people to report any suspected side effects they experience from medicines. See Other Organisations below for contact details.
I’m particularly susceptible to side effects. If you really are struggling, don’t feel you have to carry on. You have options.
Shelley
Living with Colitis
People taking drugs that weaken the immune system should also avoid live vaccines. See our information on Travel for a list of live vaccines that are given in the UK. People with a weakened immune system may also be at risk of infection if the people they live with have had live vaccines – but this is only a low risk and only the case for a small number of vaccines:
Nasal spray flu (given to children only). Only a risk to those who are severely immunocompromised – speak to your doctor if you are concerned.
Azathioprine and mercaptopurine increase the skin’s sensitivity to sunlight, and so people taking these medications are advised to use sunblock and cover their skin when out in strong sunshine.
The Patient Information Leaflet that comes with your medication will tell you whether you need to take any special precautions. For more information you can also refer to our individual drug treatment sheets.
When you are travelling, it is important to be aware of the temperature which your medication needs to be stored. Biologics such as adalimumab and golimumab that have to be kept refrigerated could be stored in a small cool bag, obtainable from chemists. If you are travelling to a hot country, certain other medications may also need to be kept cool. For example, the waxy coating on suppositories may begin to melt in the heat.
Our information on Travel has more details on taking and storing medications away from home.
You can also talk to your local pharmacist, who has professional knowledge and should also be able to answer any questions you have about medicines. Many pharmacists have a private consulting room if you do not feel comfortable discussing your prescription over the counter.
All medicines come with a Patient Information Leaflet. These are produced by the manufacturer and approved by the MHRA. They include instructions on how to take the medicine and information on possible side effects. Copies of Patient Information Leaflets can be found on the Electronic Medicines Compendium website. The Association of the British Pharmaceutical Industry has details of companies that make prescription drugs. For companies that make over-the- counter drugs, (drugs you can buy without a prescription) go to the Proprietary Association of Great Britain website. See our list of Other Organisations below for contact details.
My hospital has two IBD nurses who explain things to me clearly about new treatments, or what routes they feel I might have to explore. I have also found that Crohn’s and Colitis UK and the Crohn’s and Colitis UK Facebook forum has helped me process new information.
Emily
Living with Colitis
• Living With Crohn's or Colitis
• Fatigue
• Taking Medicines
• Managing Bowel Incontinence
• Living With a Stoma
Health professionals can order some publications in bulk by using our online ordering system. If you would like a printed copy of a booklet or information sheet, please contact our helpline.
Our helpline is a confidential service providing information and support to anyone affected by Crohn's or Colitis. Our team can:
• help you understand more about Crohn's or Colitis, diagnosis and treatment options
• provide information to help you to live well with your condition
• help you understand and access disability benefits
• be there to listen if you need someone to talk to
• help you to find support from others living with the condition
Call us on 0300 222 5700
Email helpline@crohnsandcolitis.org.uk
Use our LiveChat
This closed-group community on Facebook is for everyone affected by Crohn's or Colitis. You can share your experiences and receive support from others.
IBD Patient Panels, which are supported by Crohn’s & Colitis UK, are groups of people with Crohn's or Colitis who use their perspective as a patient to work with their IBD healthcare team to help improve their hospital services. For more information on patient panels, please contact our Patient Engagement Team.
Our Local Networks of volunteers across the UK organise events and provide opportunities to get to know other people in an informal setting, as well as to get involved with educational, awareness-raising and fundraising activities. You may find just being with other people and realising that you are not alone can be reassuring. Families and relatives may also find it useful to meet other people with Crohn's or Colitis. All events are open to members of Crohn’s & Colitis UK
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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
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