living with crohns disease living with

living with
crohn’s
disease

What should I tell my friends and family?

It can be difficult talking to friends and family about Crohn’s disease; you may be embarrassed talking about your symptoms and this can feel isolating, however talking about your problems may help you to feel more positive about your condition and help you find practical solutions.26

You may just want to tell a few key individuals close to you, or more people. It depends entirely on how many people you are comfortable knowing about your condition and how close you are to them. You could discuss it with a small number of people, and later share your diagnosis with more people as you feel more comfortable, and you don’t have to give everyone a detailed explanation. Discussing your condition should help people to understand your experiences and enable them to be supportive when things are difficult.26

Useful talking points could include what Crohn’s disease is, what your worries and concerns are in relation to it, your symptoms and how they affect you, and what support you need to help manage them. It may also be helpful to discuss specific aspects of Crohn’s disease you find difficult, such as what happens during a flare-up, how your symptoms make you feel, how you may need to have urgent toilet access, the effect of your symptoms on your social life, and any side effects from your medication.26

You may wish to ask for support from your friends and family, which could involve understanding when you feel unwell, flexibility when making plans if an activity isn’t appropriate and encouragement to live healthily and keep taking your medication.26

Having printed or web resources to share with people you discuss your condition with may also help them to understand Crohn’s disease better.26

Informing family and friends of the kind of treatment you’re receiving, what the possible side effects are, and what you require in terms of medication storage in the fridge may also be helpful, so they understand if you experience side effects and what they should or should not do with your medication, such as they shouldn’t take it out of the fridge.

For more information, please visit Crohn’s & Colitis UK.

https://crohnsandcolitis.org.uk

What should I tell people at work?

When applying for a job, you do not have to disclose your condition, and the prospective employer cannot ask you about any health conditions or sickness absence you may have had. If you require a medical examination or questionnaire upon being offered a job, the offer will be withdrawn only if they can prove you won’t be able to do your work after reasonable adjustments are implemented. If you decide to tell your current employer about your Crohn’s disease, they must follow the Equality Act 2010 and implement reasonable adjustments to help you manage your condition at work.19

Reasonable adjustments that would not generally be too expensive could include:19

  • Allowing time for medical appointments or treatment
  • Flexible working arrangements, such as shorter or different hours
  • Unlimited toilet breaks
  • Moving your work station close to a toilet
  • Providing a car parking space close to the entrance into work
  • Allocating some of your duties to someone else
  • Offering another place of work
  • Providing you with relevant training, for example if some of your duties have been reallocated and you take on new tasks that are more suitable to your needs.

If you tell your employer about your Crohn’s disease, you may be unsure if you should tell your colleagues as well. This could help them to understand why you need reasonable adjustments and how your condition could affect your ability to work. If you find discussing your symptoms difficult or embarrassing, it may be helpful to show your colleagues resources for Crohn’s disease. Particularly useful things to tell people could include that your condition is not infectious, and how it is different to irritable bowel syndrome (IBS).19

What should I tell my healthcare professional?

You may have questions about your condition or your treatment when talking to your healthcare professional. These could include:27

  • Can you tell me why you have decided to offer me this particular type of treatment?
  • What are the risks and benefits of this treatment?
  • Is there any other treatment that I should not use while using this treatment?
  • If I am unwell should I stop this treatment?
  • What should I do if I get any side effects? (Who should be my first point of contact, for example, should I call my GP, my IBD nurse specialist or go to the accident and emergency (A&E) department at a hospital?)
  • Can you provide any information or advice for my family or carers?
  • Is there anyone I can talk to about my feelings about Crohn’s disease?
  • Is there some information (a leaflet or website) to help me understand my condition?

There are certain situations where you should contact your healthcare professional. Tell your healthcare professional:

  • If you experience side effects (this includes any possible side effects not listed in the side effects section or the Patient Information Leaflet)
  • If your Crohn’s disease is not improving