Young person's guide to IBD

Written by: 
Monica Lalanda, an Emergency Medicine doctor. Monica is also a medical writer and illustrator

Coping with inflammatory bowel disease (IBD)

It often takes time to adjust to living with a long-term illness; having inflammatory bowel disease (IBD), either ulcerative colitis (UC) or Crohn´s disease (CD), is challenging for most people.

Trying to stay positive is always helpful. You may have been feeling ill for quite some time; at least now you know what is actually wrong with you and that treatment will probably make you feel better. 

Here is something you can focus on: you will not be unwell all of the time; spells of illness (flare-ups) will be followed by long spells of being well (remission). 

Accepting your condition might seem hard when you are first diagnosed, but it is only a matter of time before you will be able to take control of your life. Most people with IBD manage to live pretty normal, happy lives and there are plenty of things you can do to help yourself.

Tips for everyday living with IBD

The following tips will help you to manage the symptoms of inflammatory bowel disease (IBD) and get on with your life: [1, 2]

  • Find out as much as you can about IBD; information is power. Knowing what to expect will make it all less stressful. Joining a group or association, even if it is an internet group rather than one where people meet face-to-face, will help you to express your worries and find support and tips. Join or start a sixpartswater user group [LINK], look out for a facebook group you can join, and go to www.ucandcrohns.org/ for more useful information
  • Take your medication. This is the one thing, more than any other step, which will help to keep you in remission. Yet it’s easy to forget to take your medicines when you’re feeling well, so the best thing is to make it part of your daily routine. Set up a discreet alarm on your mobile phone or watch, write it in your diary or on your wallplanner or leave your medication box next to your toothbrush
  • Eat a balanced diet. Certain foods will make your IBD worse, particularly if you have Crohn’s disease (CD). Keeping records during the first few months of what you eat and how you feel will help you learn what to avoid. You may find it helps to cut down on junk food too; it contains too much sodium (salt) and fat, which can make any symptoms more intense
  • Sometimes, taking vitamin and mineral supplements will help to keep your energy levels up; tell your doctor or nurse if you are in remission but feeling tired.
  • Stop smoking. If you have CD, it will make it much worse. It’s not easy to quit, but it can make a big difference. If you need help, talk to your doctor; there are lots of methods available to help you give up
  • Be practical. Sitting near the door in class when you’re going through a bad patch will cause less disruption if you need to use the bathroom. If you’re in an unknown place, finding out where the bathrooms are in advance will save you the stress of looking for them in a hurry. Make use of a handbag or backpack, and always carry some tissues or wipes and some spare underwear with you in case you have an ‘accident’
  • Try to avoid everyday simple illnesses as much as possible. You are more vulnerable to infections and they can make your IBD worse. For example, avoid visiting people who are unwell if you can. And if you catch a cold or have a headache, do not take drugs called non-steroidal anti-inflammatory medicines (also known as NSAIDs), such as ibuprofen or similar medicines that you can buy over the counter at the pharmacy - they might cause a flare-up
  • Get advice on contraception; the absorption of the contraceptive pill might be greatly reduced if the lining of your intestine is inflamed during flare-ups, so you might need to use a barrier method (such as a condom or diaphragm) at these times.
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