Ulcerative colitis: the care you should expect
Ulcerative colitis is a lifelong condition in which the large bowel (colon) becomes inflamed. It can cause abdominal pain, diarrhoea (which may be bloody), tiredness and weight loss. Symptoms usually come and go, suddenly flaring up before easing off for a few weeks or months. Because flare-ups are unpredictable, living with ulcerative colitis can cause anxiety and stress. There is no cure, so the aim of treatment is to control symptoms as much as possible and help people have the best quality of life they can.
We want this guideline to make a difference to people with ulcerative colitis by making sure:
- doctors know the best way to treat flare-ups, depending how severe they are and how much of your bowel is affected
- your doctor fully explains the pros and cons of different drug treatments to prevent flare-ups, so you can choose what’s right for you
- you get specialist advice on what to expect if surgery is a possible treatment option for you.
Making decisions together
Decisions about treatment and care are best when they are made together. Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.
To help you make decisions, think about:
- What matters most to you – what do you want to get out of any treatment?
- What are you most worried about – are there risks or downsides to the treatment that worry you more than others?
- How will the treatment affect your day to day life?
- What happens if you don’t want to have treatment?
If you can’t understand the information you are given, tell your healthcare professional.
Read more about making decisions about your care.
Where can I find out more?
The NHS website has more information about ulcerative colitis.
The organisations below can give you more advice and support.
- Crohn's and Colitis UK, 0300 222 5700
- Crohn's in Childhood Research Association (CICRA), 020 8949 6209
- IA (the ileostomy and internal pouch support group), 0800 0184 724
NICE is not responsible for the content of these websites.
To share an experience of care you have received, contact your local Healthwatch.
We wrote this guideline with people who have been affected by ulcerative colitis and staff who treat and support them. All the decisions are based on the best research available.
ISBN: 978-1-4731-3393-8
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