My newly immunosuppressed life
This time last year I started to feel a pain in my stomach. It felt sort of like trapped wind, but it just wouldn’t move, and it stayed for a few days.
As editor of
, a huge part of my job is keeping track of the goings-on in the five council areas which make up the Tees Valley region.A few weeks ago, a councillor at Redcar and Cleveland Borough Council, Coun. Graham Jeffery, was granted a six-month exemption from attending meetings due to his health.
While he continues to work for his constituents, the Liberal Democrat councillor has been diagnosed with a lung condition and has been given medical advice to avoid large gatherings. A report given to his fellow councillors says this is “due to issues with his immune system [which leaves him susceptible] to other illness.”
This story struck a chord with me, as that same week I received a copy of a letter the sent from the hospital to my GP. It said:
“This is just a short letter to explain that Leigh has commenced immunosuppression…”
Around this time last year I started to feel a pain in my stomach. It felt sort of like trapped wind, but it just wouldn’t move, and it stayed for a few days. It would vanish, and then come back a few weeks later, in exactly the same place.
With the pain always being in exactly the same location I thought it was worth keeping an eye on. And then, one day in March or April, it came back much stronger, along with a fever, vomiting and diarrhoea.
In those three or four months before that day, I’d lost about 11 pounds in weight without trying. I booked an appointment with my GP.
On the morning of the appointment I noticed another symptom - blood in my poo.
NHS England has the Faster Diagnosis Standard, which is a target to diagnose 75% of people with cancer within 28 days of referral from their GP. This is excellent news for those of us with similar symptoms who don’t have cancer.
Since going to see my GP I’ve had all sorts of scans, tests and inspections. I’ve even had a test for tuberculosis (it was negative, which is positive news).
A hospital is a terrible place for someone who is as obsessively competitive as me. If nurses aren’t impressed with how visible the veins in the crook of my elbow are, I feel disappointed. One nurse described my veins as being “like drainpipes”, but nothing will top the Geordie nurse who exclaimed when I rolled my sleeve up, “Eeee, yah’ve got whoppas!”.
I’ve come to know my way around my local hospital like the back of my hand, although the price of acquiring that knowledge is that of also learning what my appendix looks like from the inside, and of being told the end of my small intestine “looks battered.”
Finally, in August, I was diagnosed - not with cancer, but with Crohn’s Disease. Chrone’s is a condition where my immune system attacks my small intestine, causing inflammation and ulcers. It affects people differently, but common symptoms caused by the inflammation include diarrhoea, pain, fatigue and malabsorption. There’s no cure, but the simplest long-term treatment, particularly for those with mild-to-moderate disease like me, is to suppress the immune system’s ability to respond.
In March 2022 there were 561,356 immunocompromised people in England, which equates to roughly one in every hundred people. My local ICB - North East and North Cumbria - tells me there are currently 119,029 immunosuppressed patients in this area.
Those are people whose immune systems don’t work properly either as a result of an illness, or the medication they take.
Since becoming officially diagnosed with chronic illness I’ve learned a lot. Symptoms involving bums and poo are still somewhat taboo, but the professionals who deal with patients have seen it all before. There’s no shame or embarrassment once you cross the threshold of having a camera sent so far up you that you think it might make you sneeze.
On a more serious note, one of the things you hardly see mentioned is how time-consuming it is, to manage a chronic illness. People think of it as being too ill to do things, and while that may be the case for some people on some occasions, it’s much more complicated.
I live with mild symptoms, and have to take time off work at least once or twice a month to have blood taken out of me, vitamins injected into me, or to talk about what impact my medication is having.
Despite this, I’m incredibly lucky. I’ve had days where I’m incapacitated by illness, but they’re rare, and I also have the benefit of not relying on public transport to get to my appointments. I can’t imagine the extra mental load of having to catch a bus and travel for longer while experiencing worse symptoms.
Unlike Councillor Jeffery, I haven’t been advised to avoid large gatherings or recirculated air. I’m free to carry on as I was before, except with regular shingles, pneumococcal, flu and Covid vaccinations.
Since beginning immunosuppression I haven’t found out if my future involves ridiculously long recovery periods for simple colds, or if I will win the biological lottery and my body ends up not responding in any way to simple viruses.
But I have two young children, so it’s only a matter of time before I find out.
Leigh is the editor of The Teesside Lead, our sister title up in the North East. If you’re able to support his investigative journalistic efforts by subscribing for free, or taking a paid supporter option, it’ll ensure he keeps the fire burning to keep writing alongside his health issues.
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