Annies story

Part IV

June, Year 1: Annie receives a timely diagnosis and supportive information

Annie’s faecal calprotectin test reveals a level of 954. As this is over 250mcg/g, it falls into the ‘high risk’ category for IBD. Annie is referred for a colonoscopy and biopsy to confirm the IBD diagnosis using the local referral pathway agreed between primary and secondary care.

The GP explains their suspicions to Annie, what a colonoscopy involves, and how to prepare for it. They also signpost her to online information about colonoscopies that she may find helpful.

Hannah attended her colonoscopy appointment in June, within four weeks of the referral. The colonoscopist told Annie that she may have Crohn’s disease, recommended the Crohn’s & Colitis UK website for further information, and arranged an urgent outpatient consultation in a new diagnosis clinic.

The lab completes the histological processing and reporting of her urgent biopsy samples within two weeks.

Two weeks after her colonoscopy, the new diagnosis clinic confirmed that she had Crohn’s disease. Although Annie feels upset, she prepares for the news because of the information she received from her GP and the endoscopy team.

Information point 2: Timely identification and referral

The consultant explains the results of her tests and informs Annie that her Crohn’s disease is affecting the terminal ileum. They do this in simple terms and use diagrams to ensure she understands.

Additionally, they informed Annie that her treatment plan would record this information and share it with her and her GP within 48 hours. Furthermore, they recommend that she undergo timely imaging of her small bowel, which should occur within four weeks using tests that do not involve radiation. Options for imaging include MR enterography or intestinal ultrasound.

Moreover, the healthcare team offers Annie exclusive enteral nutrition, prednisolone, or budesonide as induction therapy. They take the time to explain the risks and benefits of each option to her.

Although Annie is concerned about the side effects of prednisolone, she ultimately chooses to take budesonide instead.

The consultant discusses the importance of treatment and implementing the right strategies. This will help Annie self-manage her condition and support her long-term emotional well-being. They confirm that Annie will be referred to an IBD nurse specialist. This nurse will discuss her condition in more detail and provide support with her diagnosis.

Annie’s healthcare team assigns her a consultant gastroenterologist and provides her with information about the IBD advice line and nursing service.

Referral to an IBD Nurse Specialist

Following her diagnosis, Annie is referred to an IBD nurse specialist. The nurse fully assesses her disease with a baseline infection screen, including nutritional status and bone health. Her mental health is also discussed.

Together, they write Annie’s personalised care and support plan, starting with her aspirations, goals, and needs. They identify that coming to terms with having Crohn’s and making sure this doesn’t impact her job are most important to her. The nurse reassures Annie that this plan will be reviewed regularly and shared with her GP.

Annie receives a patient pack that includes information about Crohn’s disease and local groups for people living with the condition. Additionally, healthcare providers advise her that she may benefit from counselling or peer support. They also remind her that Crohn’s & Colitis UK is a helpful charity offering more information, advice, and support, including employment-related resources.

The IBD nurse gives Annie a chance to ask any questions and checks at the end of this conversation that Annie feels confident that she has what she needs to manage her IBD and knows how and when to get in touch.

She receives a referral to a dietitian who helps her create a diet plan that addresses her nutritional deficiencies and unintended weight loss while managing her symptoms. They informed her that she would have an annual review and provided her with contact details for advice in the interim.

September, Year 1: Annie learns to come to terms with her diagnosis and receives personalised care

A consultant reviews Annie in the clinic. She initially did well on budesonide, but as the team reduces her dose, she develops additional symptoms of diarrhoea.

They agree to continue the budesonide and initiate azathioprine as a steroid-sparing agent. An appointment with a pharmacist is made in six weeks, with blood tests and a virtual review in two and four weeks.

Annie has found it difficult to accept the diagnosis and how it may affect her life. The IBD nurse specialist takes the time to answer Annie’s questions, help her come to terms with the diagnosis, and ensure she understands what this means.

They agree on an ongoing management plan that includes putting Annie on a patient-initiated follow-up (PIFU) pathway. The plan also supports her in navigating and accessing specialist advice and treatment quickly when needed, aiming to reduce the impact of flares on her work.

As part of this conversation, they discuss the early symptoms of a flare for Annie. They also cover when and how she should contact the IBD service.

The nurse reminds Annie how valuable Crohn’s & Colitis UK can be. This organisation helps her come to terms with her diagnosis and provides advice. Within 48 hours of her appointment, Annie’s IBD team emailed her GP. They sent her a personalised care plan and clear guidance about what to do if her symptoms flared.

Although the diagnosis is shocking, Annie feels she has the information and support. She is ready to discuss Crohn’s with Jack, her family, and work. She also feels confident knowing her IBD nurse specialist is on hand to answer any questions or concerns.

Information point 3: Importance of personalised care and self-management

May, Year 2: Annie accesses specialist advice to manage complications

Almost a year after her diagnosis, Annie develops a perianal abscess. Consequently, she follows her PIFU pathway and calls her IBD nurse specialist, who promptly responds the next day. Furthermore, she refers Annie to the on-call surgical team using the local abscess pathway. Subsequently, the MRI diagnoses an abscess and fistula, which the surgical team then treats with drainage and seton suture insertion.