Annies story

Part II

She wants to discuss how to manage her fatigue, but the doctor tells her that her tests show she isn’t anemic and that fatigue is common with IBD. They don’t explore ways to manage her fatigue.

The doctor doesn’t refer Annie for mental health or dietetic support, nor does he direct her to a patient organization like Crohn’s & Colitis UK for peer support. They don’t discuss or set up a care plan.

After ordering blood tests, the doctor finishes the appointment, and Annie leaves feeling that her most important concerns weren’t addressed.

Cycle of Flares and Emergency Care

Annie continues in a cycle of flares and uncontrolled symptoms and sees her GP in between gastroenterology appointments.

She has several emergency visits that result in three unplanned hospital admissions, where she receives steroid treatments. She develops two additional perianal abscesses, which doctors treat in A&E with incision and drainage—one of these procedures is performed at a different hospital.

Annie plans her day carefully to ensure that if she needs to go out, there are always toilets nearby, and she carries a spare change of clothes.

She no longer goes out unless she has to.

Her manager agrees for her to reduce her hours and take a demotion in an attempt to manage her tiredness and anxiety.

She develops extra-intestinal manifestations on her skin in erythema nodosum (painful red lumps on her shins). These aren’t picked up at first as she isn’t aware that this can be a symptom of Crohn’s, but when they are, her GP refers her to a dermatologist.

December, Year 3: Hannah has emergency surgery

Over several weeks, Hannah experiences progressive abdominal pain. One evening in December, this becomes unbearable.

Her housemate takes her to A&E, where a CT scan reveals an abdominal abscess. The abscess is located around the terminal ileum and is secondary to severe, uncontrolled Crohn’s inflammation.

Hannah requires a resection of a segment of her small intestine. She also needs the formation of a temporary stoma and is placed in a general surgical ward.

After the operation, a stoma team member visits Hannah on the ward. They show her how to change her stoma bag and give her extra bags to use until she leaves the hospital. She is informed that she will need to go to her GP to arrange follow-up deliveries. A follow-up appointment with the stoma team is scheduled in two weeks.

After her surgery, Hannah struggles to come to terms with having a temporary stoma. She feels worried about how to manage it and feels as though she has failed. She isolates herself from friends and family, believing they will react differently toward her.

Hannah especially struggles with her stoma at night, and by her first stoma appointment, her skin is red and sore.

She has not left her house in weeks and is feeling very low and depressed. The emotional stress has put an enormous strain on her relationships, especially intimacy, and her relationship with Cameron breaks down. She is struggling to cope and doesn’t know how she will return to work. She has no long-term plan for her recovery or care, and she doesn’t feel in control of her Crohn’s or future.

May, Year 4: Hannah has a second operation to reverse her ileostomy

In May, Hannah is well enough to have a second operation to reverse her ileostomy. The procedure goes well and she is discharged after four days. She goes home to her parents to recover and has the usual symptoms following this procedure: diarrhoea for a few weeks.

As her symptoms ease, she returns to her flat and returns to work.

Hannah should have had a follow-up endoscopy six months after the reversal to ensure there had been no recurrence. But as she still has no named gastroenterologist, no endoscopy was arranged.

December, Year 4: Hannah develops another perianal abscess and starts the correct treatment

In December, Hannah develops abdominal pain and another perianal abscess. Again, she takes time off work and goes back to A&E, where she has an MRI of her small bowel and pelvis and a colonoscopy, which confirms perianal Crohn’s and recurrent ileal Crohn’s.

Hannah feels very upset and frustrated with the setback, as she believed she was improving after her ileostomy reversal. Once again, she receives little information about what this means.

The hospital admits her, and she undergoes an examination under anesthesia to drain the abscess. They discharge her the same day and schedule an appointment for her to see the gastroenterologist.

Twelve weeks later, she sees the gastroenterologist in the clinic, who prescribes infliximab and azathioprine. They explain to Hannah that she must take these for the foreseeable future.

Over the next few weeks, Hannah’s Crohn’s symptoms ease. She returns to work and can return to full-time after six months. Hannah is pleased her Crohn’s is under control but is confused and angry as to why it’s taken this long to start the right treatment.

Optimal journey

Let’s see how Hannah’s journey could be so much better. We start at the same place as the suboptimal story…

May, Year 1: Hannah visits her GP to discuss symptoms

The GP asks Hannah if she has any family history of bowel conditions. They also ask if there have been any changes to her menstrual cycle and if she’s been losing weight. The GP notes that she doesn’t appear anaemic.

They ask about the color and consistency of her stool and whether she has seen any mucus or blood. The GP explains what mucus or blood in the stool might look like.

The GP probes a little more into the causes of Hannah’s stress. She explains she has experienced stress before at university, but the symptoms are new. Based on her symptoms and age, cancer is not suspected. The GP uses the Advice & Guidance e-Referral Service (e-RS) system to seek specialist advice.

A consultant responds within 24 hours and advises the GP to rule out infection, screen for coeliac disease, and perform a faecal calprotectin test (FCP). The GP also orders a full blood count, urea and electrolytes, and C-reactive protein.

The GP contacts Hannah to arrange for her to complete the tests at her local community diagnostic hub and advises her that she can complete the FCP test at home. They explain what each test means in a way that Hannah understands and signposts her to information online.