The blink of an eye…
It’s been a while… I feel like we’ve been here before.
I’ve been writing this, or a version of this blog for 20 years.
Firstly, how am I that old? Secondly, fuuuuuck.
I’ve had a chronic disease all this time.
Over the years I’ve gone louder and quieter about colitis and health. The pattern is clear: I go quiet when it gets too much — when there’s no hope to share. Because what help am I if not sharing hope?
The last year has flashed by in some ways — a reminder of how quickly life goes. But in others, it’s been a long, painful rollercoaster of mental and physical suffering with very little hope.
You might’ve seen my life and thought, “oh, she looks fine.” That’s the hardest part of all this. I look and sound fine. Inside — mentally and physically — I’m very much not fine. A lesson to us all in how we care for one another.
But — spoiler — hope is back with a bang.
And I’m here to tell you how and why, because it hasn’t been easy. And fuck, do I want other people who’ve lost hope to find it again.
2025 So Far
This year has been… something. A time of being very, very sick — but not “sick enough” to get help. Of being gaslit by various medical teams, and inevitably, by myself.
It’s been heavy with grief — for what I’ve lost by being sick, what I’ll never have because of being sick, and what I see myself losing every single day. What I can’t do. Who I can’t be.
My identity has shifted. I’ve become obsessive about my symptoms, developed health and hospital anxiety, and basically got pretty fucked up (not in a fun way).
But I had to go through this year to find my way out.
With grief came acceptance.
With control came systems — healthy ways to cope and to heal.
And while I may still be working my way through these things, there has been a very healthy shift and acceptance.
If you know me, you know I’ve got a lot to say. So, many more blogs (and eventually a podcast!) are coming. But today, let’s focus on where I find myself now: hopeful and healthy-ish.
Let’s Rewind
Colitis diagnosis: 2009
Remission: for yeeeears
2023: started to feel a bit off — tired, achy, something wasn’t right.
GP didn’t give a shit and told me I was “just getting old” (no joke). Couldn’t get to see a consultant at Guy’s and St Thomas’ — wasn’t “sick enough.” Sacked my hospital. Moved to Royal Surrey.
2024: drastically changed my diet. Fell off a cliff with symptoms.
Royal Surrey didn’t do much to help — tried the cheap drugs that didn’t work. Finally ready for one that would, but didn’t get it in time. Got so sick and malnourished I was hospitalised. Heart went mad. Three weeks in hospital.
Due to Royal Surrey’s complete incompetence, I was admitted again in November.
Tried a new drug and spent the year having terrible side effects. It worked just enough to keep me out of hospital — so they could ignore me — but not enough to let me actually live my life.
2025: A heart ablation in February to stop arrhythmia (which triggered PTSD after my brother’s stroke and heart transplant)… it’s been a lot.
A lot of asking for help and not getting it quite right.
The Cast of Characters
Dr A — the evil doctor who gaslit me and kept me sick.
Dr S — the angel doctor who saves me every time. I see him privately every six months to sense-check everything and steer me back on track.
In September, I was sitting in the garden of a beautiful villa in Tuscany, on the phone with Dr A, going over the same symptoms: fatigue, constant abdominal pain (sometimes so bad I yelp), blood in stool, brain fog, joint pain, urgency after eating… you name it.
The conversation went something like this:
Me: “Surely this isn’t right. What else can be done?”
Dr A: “We can increase the frequency of your medicine, but not till February. Tell us if symptoms get worse.”
Me: “I am telling you they’re worse. They’re horrendous. I can’t sleep, work, sometimes leave the house or eat properly. I’ve got no social life.”
Dr A: “Okay, well, we’ll increase the meds in February.”
Me: “You’re happy for me to live like this? This isn’t how I’m meant to feel? Why can’t I have the meds sooner”
Dr A: “Well, the only option is hospital admission and steroids, really.”
We went round in circles. Hospital or home as I am. No more options. I gave up. My heart sank. I cried — in a 1600th century chapel, no less.
The phone rings.
Dr S: “Hi Lucy, it’s Dr S.”
Me: “Oh… hi.”
Dr S: “Did you forget we had this call booked in?”
Me: “I might have.”
Dr S: “If you’ve got time, let’s chat?”
Me: “Hell yes.”
I told him everything.
Dr S said, “No. Absolutely not. This is not good enough. You’re completely right to question it. There is much more available to you. We have so many more medicines. Let’s move you back to Guy’s and St Thomas’. I’m going to fix this. You deserve better.”
You can imagine the emotion. We wrapped the call — and then I walked straight out to deliver a wedding rehearsal dinner.
Back at St Thomas’
Yesterday, I saw a consultant there. Since being back with them for a month, I’ve had all the baseline tests — bloods, CT, stool — and a mega-dose of my drug to see if upping the amount helps.
The measures will be calprotectin and colonoscopy — to see if inflammation’s going down. The goal: remission.
I’m on Ustekinumab (Uste) — it’s reduced inflammation enough to get by, but it’s still too high. So, I’m left with symptoms and inflammation running wild in my body, which is dangerous — especially while my immune system’s suppressed and can’t fight nasties (like cancer, which chronic inflammation can cause).
You get the health anxiety bit?
Hope, Again
Hope is back. But to get here, I’ve had to spend a lot — emotionally, financially, physically.
I’ve had to track everything.
And I had to make a decision:
Hell fucking no. I’m not living my one life like this.
I had to learn the science. I had to dig myself out of the bad days and keep up with all the admin, the appointments of which right now there are approx 4 a week.
I had to believe:
I’m right when doctors aren’t — even when that’s hard to hold.
I’m worth helping — even when they made me feel I wasn’t.
I can get better — when I’m being told this is ‘better enough’.
My private team — Dr S, Nikki and my dietician plus a few close friends and fam — have been everything.
They educated me, validated me, and reminded me I don’t have to suffer.
They made me feel seen and gave me the strength to push for more.
Priceless. Wonderful, wonderful humans.
My Support System
GP - for regular bloods, exploring other things that may be wrong alongside the UC (this was not easy to get in place but is now flowing)
NHS consultant (and nurses) - the right version of this team, don’t settle for a bad team, I did for too long
Private consultant (every 6 months) - worth every single penny and not as expensive as you’d think
Private tests - shortcuts when things take too long elsewhere and we’re not here to mess around, we need stats and science and that’s all the docs will listen to
Dietician - for help creating a diet that fuels healing and reducing fear around food
Psychologist
Business and Life coach (all round best human you could ever meet)
My own self-education and healing: nutrition, ulcerative colitis, nervous system, stress
Where I Am Now
Life is full. A lot of weekly survival plans, hospital appointments, constant diet tweaks, trying to give my poor brain a break.
I’m struggling every day — to maintain all this, to climb out of the hole, to avoid getting worse, to keep work going, and still be a good mum and friend.
But i have support and I have hope. And I hope you do too. Never settle for less than you know you deserve and always have your own back. On the harder days, be graceful and kind to yourself, they are part of healing.
Love to all,
L x
Next up: The Cost of Being Well — because it’s seriously expensive.