IBD sucks. It may not kill you, but it can and will fuck your life.

My first colonoscopy did not give me a diagnosis. By the time I went back to my GP with the results, they were only hinting at something. No meds, no firm label, and by then there was almost nothing to report. Everything had gone back to normal, so I made nothing of it.

A few years later, around 2010, I was living in Beijing and things flared again. This time it was abdominal pain I could not control, running for the toilet, sweats, and fever. I did not speak the language well then, so I did very little about it until my then girlfriend, now wife, insisted I see a gastroenterologist.

That meant another colonoscopy, this time with no anesthetic. Horrible. Not recommended. Again, the diagnosis was inconclusive, but it pointed toward ulcerative colitis. I went to a local hospital, not an international one. They gave me anti-inflammatory medication and Traditional Chinese Medicine.

For a while it still felt episodic: it came, it went, and I moved on. But a pattern started to appear. The time between flares got shorter, and the pain became more severe.

I was in and out of hospitals in Beijing and Shanghai. In China, you usually go directly to a hospital rather than a family doctor, unless you have a specialist appointment. At one point I was told the medicine I should take was mesalamine, but it was not readily available and I would need to order it myself. I was paying around RMB 1000 a month for granules, but I still was not taking the disease seriously. I was ignorant about what I had and how severe it could become.

Maybe that ignorance was partly a blessing. I adapted around it without letting it fully take over my life.

Road trips were peppered with gas-station pit stops. My kids were born in 2020, and 2021 to 2022 were my low years. I lost about 20 percent of my body weight. At my lowest I was 67kg and looked seriously unwell.

Blood and yellow mucus were daily. Knife-cutting pain was constant. Functioning normally only really happened from lunch onwards. Mornings were for fighting pain and going to the bathroom. The COVID years in China restricted movement, which, in a strange way, made that easier to hide.

We moved to Italy at the end of 2022. In early 2023 I was seeing a specialist and being observed. The flares were not getting better, but I finally had ready access to mesalamine and corticosteroids to fight the worst of the inflammation.

After two more colonoscopies, I received a formal diagnosis: severe proctosigmoiditis. That opened the pathway to biologics. I started infliximab in March 2025, with mesalamine as a second line of defense.

So far, touch wood, I have responded well to infliximab. My body weight is back to normal, my markers are normal, and my symptoms are under control. I had one flare for about a month. I put it down to either finally stopping smoking or a bad infusion day. I care less about which one it was than I care about the meds continuing to work.

The disease takes it out on you. You rush to the toilet uncontrollably, often for very little. The abdominal pain can be excruciating. The fatigue is constant.

The worst part is isolation. Who do you speak to? What do you tell them? I remember one family trip where I was constantly looking for a toilet. It became a joke that lasted for years. It was only after formal diagnosis that the pattern was connected to the disease.

The same thing happened at home. I had arguments with my wife over bathroom use: "You always need the bathroom," "control yourself," and all the usual things people say when they do not understand urgency. Those arguments changed once the disease had a name.

It felt like the boy who cried wolf. The symptoms only became real to other people once a diagnosis made them official. Honestly, the diagnosis was also a relief for me.

I did not change my habits much. I am a "live to eat" person more than an "eat to live" person. I kept eating spicy Chinese food and drinking baijiu. Rationally, I understood that food was not creating the underlying IBD flare, though it could aggravate symptoms. That was a price I was willing to pay.

I tried to work with and around the disease. I might leave a little later, but I can count the times I changed plans because of it. That is a character trait, for better and worse. It is a disease, not an option, and wallowing in my own shit was not something I was going to do without a fight.

When I came to Italy, my doctor was shocked by my resistance and unwillingness to change. He said people are often hospitalized for much less. Maybe the spicy diet, smoking, and alcohol were beneficial. More likely, I was stubborn.

The line for me is simple: nobody lives in my body every day. A doctor knows the clinical model. A stranger knows their own experience. Both can be useful. Neither can fully know my body, habits, tolerance, choices, or life.

For me, IBD has two sides. The clinical side is diagnosis, drugs, treatment, monitoring, and ongoing care. Trust the experts, but ask questions. Do your own research because it helps you more than anyone else.

The lifestyle side is symptoms, habits, bathroom logistics, food choices, work, family, fear, isolation, and the daily compromises that only you can map. That side is yours to discover and forge.

I wish I knew ten years ago what I know now. Even five years ago would have helped. I cannot change that. I can only share the story and hope it helps someone else take their symptoms seriously sooner.