I was adjusting my own treatment, by feel
If you have ulcerative colitis or Crohn's disease and you're searching for this, you're probably doing the same thing: raising the dose when it's bad, lowering it when it's better, without really talking to your gastroenterologist. I did exactly that for years.
My way of handling flares was improvisation: two to four sachets a day depending on how chaotic things felt, without really knowing how many grams I was taking. Pure guesswork, hoping it would settle things down. Sometimes it worked. Sometimes it didn't.
It looked like control. It was avoidance.
At the time, I felt like I was managing my illness "my way", like I was in charge. In reality, I was putting a bandage on a gaping wound without ever asking why it was bleeding.
That's the trap of "I've got this": you get so good at putting out fires that you stop asking where they start. I was stuck in that mindset of replaying the same move and expecting a different result, without ever changing what I actually did.
There's a huge difference between managing a flare in an emergency and understanding what triggers it. Improvising gets you through one night. It doesn't move you forward an inch.
Where I'm at today
I eventually stopped medication altogether — and I say this clearly in the book: I did it without the medical supervision I'd recommend to anyone else today. It was a leap into the unknown, not a protocol.
What really changed wasn't the dose. It was that I stopped doing everything in secret and at random. I started noting what I ate, my fatigue level, the state of my gut — the kind of unglamorous journal hospitals make you fill in. It's by looking at those lines that the causes "adjusting by feel" had always hidden from me started to show up.
Looking back…
Pushing a problem aside is not solving it. Firefighting saves you one night; finding the cause changes a life. If you change nothing, nothing changes.
Important: this is my personal experience, not medical advice, and definitely not an invitation to change or stop a treatment. Adjusting doses on your own or stopping a UC treatment can be dangerous. Talk to your gastroenterologist — that's where these decisions belong.
The full story — the denial, the hospital stays, then ten years to take my health back — is on my journey page and in the book UC: Living Without Medication.