The start of Annie’s journey

Annie has been feeling unwell for over a month. She experiences diarrhoea during the day and sometimes at night, even though she typically has one bowel movement a day.

She urgently needs to go to the toilet 6-8 times a day, and sometimes, the urge is so sudden that she’s nearly had an accident. And now she feels anxious when she’s not close to a toilet. Also, she is self-conscious at work because people have noticed that she spends more time in the toilet.

Her stomach constantly feels bloated, and she experiences abdominal pain and cramps. She feels down, and her lack of energy means she’s no longer going out or to the gym as much. She is arguing more with Cameron, which they never did before her symptoms started, and is worried that they might split up.

Self-Medication and Seeking Help

She regularly buys anti-diarrhoea medicine, such as loperamide, from her community pharmacy. She puts the symptoms down to the stress of having more responsibility at work and longer hours. Eventually, she feels that she can no longer ignore her symptoms and makes an appointment with her GP.

I’d like you to please read on to see how Annie experiences two very different journeys and outcomes.

Look out for ‘Information points’ throughout the suboptimal and optimal journeys; these highlight the key themes of optimal care for IBD. More information about these can be found here.

Suboptimal journey

May, Year 1: Hannah visits her GP with symptoms

Hannah feels embarrassed talking to her GP about her symptoms. In response to the GP’s questions, she explains that her clothes are looser, she has no blood in her poo, her menstrual cycle is normal, and she’s usually active and healthy. She says she has been stressed because of her recent promotion.

The doctor says she probably has irritable bowel syndrome (IBS), gives her a diet sheet and lifestyle advice, and advises Annie to buy hyoscine butylbromide from the chemist for her abdominal pain. They suggest that Annie return in a few weeks if her symptoms have not improved.

A week later, Annie experienced severe abdominal pain and diarrhoea. Her housemate is so concerned that she takes her to A&E.

At A&E, the medical staff take her blood, dip her urine, and perform an abdominal X-ray. They give her a saline drip and codeine, and she improves. Her C-reactive protein (CRP) level is slightly raised, but her X-ray appears clear. Later the same day, they discharged her without referring her to specialist services. The A&E doctor tells Hannah to return to her GP.

Annie sees her GP again, and she has a similar experience. The discussion focuses on reducing stress at work, but she doesn’t feel she is being taken seriously.

December, Year 1: Developing an Abscess

December, Year 1: Annie’s symptoms continue, and she develops an abscess

Seven months after she first saw her GP, Hannah attended A&E just before Christmas with a fever and an extremely angry-looking lump on her perianal area, which is agony to sit on. An emergency surgeon diagnoses and drains the abscess in the theatre and then discharges her into her GP’s care. This causes her to miss work, which adds to her anxiety.

She is avoiding eating to control her symptoms, and just walking upstairs tires her out. Also, she is avoiding Jack, friends and family due to her low mood and lack of energy and hasn’t updated her blogs for months. She has a miserable Christmas.

Referral to Gastroenterology

Hannah returns to her GP in January. The doctor takes her blood and, given her recent abscess, refers her to a gastroenterologist.

After a twelve-week wait, a gastroenterologist sees her in April, discusses her symptoms, takes blood and arranges a colonoscopy. She is given very little information about the procedure and leaves feeling worried.

After her colonoscopy, a gastroenterologist sees Annie back in the clinic six weeks later and tells her that she has Crohn’s disease. She finds it hard to process the diagnosis and the subsequent conversation. The doctor also instructs her to take a course of prednisolone steroids for eight weeks and to take 5-aminosalicylic acid (5-ASAs) daily for the foreseeable future. However, the doctor does not prescribe bone protection medication alongside the steroids.

Information point 1: Monitoring the effectiveness of treatment and shared care

Annie receives no information about living with Crohn’s disease. No one tells her about the IBD service or who to contact if her symptoms worsen. She must attend the hospital for regular blood tests and reviews. Before leaving, she has a blood test and learns that she will receive a follow-up appointment by post, and they will notify her GP. After the appointment, she has lots of unanswered questions and feels anxious about how Crohn’s will affect her life.

August, Year 2: Uncontrolled symptoms and lack of support

Annie takes her course of steroids, tapering them as instructed. Her friends and colleagues comment on how well she looks. However, despite the outside improvement, as the medication is reduced, loose diarrhoea with blood and mucus and abdominal pain return.

Annie comes to the end of the course of steroids, but her next outpatient appointment is still several weeks away.

She isn’t sure what to do next. She still doesn’t know how to discuss her condition with her boyfriend, friends or colleagues and feels embarrassed and upset.

Her lack of understanding of Crohn’s disease has meant she has begun to normalise her situation. She thinks that her symptoms are an unavoidable part of ‘having Crohn’s’.

It’s now August, and Annie is unable to work. She goes to her GP to ask to be signed off sick. The GP prescribes more prednisolone and says that they will chase her gastroenterology appointment. There is no locally agreed flare pathway.

Follow-Up Appointment with Gastroenterology

Twelve weeks after her diagnosis, a new doctor sees her in the gastroenterology clinic. She is weighed, which confirms she has lost more weight.

She is tearfully discussing her symptoms and experience and tells them she isn’t coping.

Her doctor acknowledges her upset feelings, but they direct the discussion towards her symptoms, tests, and medication review. The gastroenterologist learns that Annie’s GP prescribed steroids only after she mentions them.