Crohn’s and Colitis Voices: Why Self Management is a Balancing Act

As we approach World IBD Day on 19th May, Kate explains why for her, self management requires a responsive multidisciplinary team.

I’ve lived with Crohn’s Disease for 14 years, and I’ve always thought of effective self management as a balancing act. I have to know when to take control and when to give it up, I can’t do too much but I have to be careful not to do too little. I have to pay constant attention to my Inflammatory Bowel Disease (IBD) without letting it take over my life completely, and I have to know enough to be an educated, responsible patient, but not enough that I become a terrified patient.

The right relationships

It is a difficult balance to maintain, and it relies almost completely on the relationships I have with the IBD team who look after me. Without the right support, I wouldn’t have the energy to keep on top of all the things I need to do to help myself.

Rapid access puts me in control and makes me an asset

When I know that I will have rapid access to the right care if I need it, I’m confident enough to try to deal with the frequent fluctuations of the disease myself.

At my best, I feel like a resource for the people who look after me. If I’ve had a pain before and recognise it as gastritis, or uveitis, a blockage in my stoma, or I can recognise the distinctive fatigue that comes when I’m anaemic, or the spasm that comes with ‘Crohn’s pains’, it makes it easier for everyone to get me back on track more quickly.

There is a long list of symptoms that crop up frequently even when I am relatively stable, but they are all manageable in their milder form when I feel confident, and supported by the right services. Sometimes I might need to give the nurse a quick call to double check I’m doing the right thing, but when I know that I can get the right advice when I need it, I don’t feel like I have to go the hospital or see someone face to face in clinic.

The constant management of a chronic illness is a lot to take on, and the times during my life when I have not had responsive support and access to the people and services I need, are the only times that I have lost my confidence and ability to cope.

Unravelling everything I had built up

Two years ago, despite the tremendous support of close friends and family, it only took eight months of being unable to gain access to the care that I needed to unravel everything I had learned and built up during 12 years of responsive, inclusive care.

I had just moved and was settled at a new hospital, when a flare of Crohn’s cropped up on the skin at the site of my proctectomy wound. I expected that I would call the nurse, explain the situation, get some steroid cream, and the problem would resolve as it always had in the past.

Unfortunately the nurse told me it was possibly an abscess or fistula. I tried to explain that the skin problem was something I was very familiar with – and that I’d actually had an abscess before and it definitely wasn’t that – but I was advised that nothing could be done until infection was ruled out and I was sent to A&E, and told to stop my Humira (a biologic drug).

Cycle of deterioration

I count that tiny flare up of Crohn’s on my skin as the worst flare I’ve ever had, because it was the start of a long period of not feeling heard, and feeling like I was shut out of the system I had always relied on so heavily.

I knew my body and what I needed – steroid cream and back on Humira – and I couldn’t get it, because I couldn’t communicate with the right people.

I couldn’t get hold of a consultant by any means, and when the nurse did call me back and I reported worsening symptoms, I wasn’t given an appointment. I was sent to A&E, and repeatedly admitted to the surgical ward where I was told that I needed to be back on Humira. But without being able to contact the consultant, I couldn’t get it.

I was trapped in a cycle of deterioration, A&E, admission, and discharge with instructions to contact gastroenterology to get back on Humira.

Finding a way back in

Throughout all of this, I was phoning and emailing anyone I could – other consultants, secretaries, wards, stoma nurses, department receptionists and booking teams – all in the hopes of finding a way into the gastroenterology clinic, and all to no avail.

The culmination was over a week in the general surgery ward, in pain and unable to eat, because off my medication for so long, the inflammation had spread to the duodenum and stomach. My joints had flared so badly I couldn’t walk unsupported or do simple things like open a bottle or change my stoma bag easily, and I was constantly on steroid drops to try to soothe my inflamed eyes.

I had lost my confidence, my ability to self manage, and any semblance of a normal life because I deteriorated so badly – both mentally and physically.

A frightening glimpse

Because I could not access the right services when I needed support, my symptoms worsened to the point of being well beyond anything I could manage myself. It was a frightening glimpse into what life with Crohn’s would be like without the right help.

The spiral of miscommunication only ended when I got discharged after that last stay, and spent my days camped in the gastroenterology waiting room on the off-chance that I might see the IBD nurse or a consultant. Luckily, the receptionist there took pity on me, and helped me catch the nurse, who led me to an office where a locum gastroenterologist, during an impromptu meeting in his office, finally said I needed to be back on Humira starting with loading doses, and that a steroid cream would help the skin.

That was eight months after my first call to the nurse asking for a steroid cream! Had the right services and means of communication been in place, both the emotional and financial toll of repeated A&E trips, inpatient stays and investigations could perhaps have been avoided.

The right resources – effort, organisation and a responsive multidisciplinary team

Getting the ‘self management balance’ right takes constant effort, administration, and organisation on my part. Being able to maintain that effort alongside everything else that is going on in life requires the right resources, and the right resources for me are a responsive, multidisciplinary team, within a service that facilitates communication and access when I need support.

Kate Gray is a volunteer with Crohn’s and Colitis UK and has been involved in number of pieces of work in Scotland including the development of ‘Scotland Leading the Way: A National Blueprint for Inflammatory Bowel Disease in Scotland’.

This year on World IBD Day (Saturday 19th May) Crohn’s and Colitis UK are asking for help to raise awareness of the 300,000 people in the UK, as well as millions more around the world, who are living with Inflammatory Bowel Disease (IBD).

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