15 years of IBD — my shitty story

For fifteen years I have known where every toilet is. Every road trip, every restaurant, four different countries. That is what IBD does. In most cases it won't kill you. It just quietly takes your normality.

The medical route

Things started for me when I was in my early 20s. Something was not quite right. Shitting blood is not normal, so got some tests, first colonoscopy but no diagnosis. By the time I revisited my GP with exam results in hand, it was not definitive enough and only hinting. No meds given and I made nothing of it. Honestly, by the time I had a check-up there was nothing to report. Everything was back to normal.

It wasn't until a few years later (2010) when I was already living in Beijing that things started to flare up again. This time it was uncontrollable abdominal pain, running for the toilet, sweats and fever, not speaking the language well (at the time) I did little about it. It wasn't until I met my then girlfriend to be wife that she insisted I go see a gastroenterologist. Here again another colonoscopy but this time I went hardcore with no anesthetic. Horrible, not recommended. Again the diagnosis was inconclusive and hinted towards 溃疡性结肠炎 (Ulcerative Colitis). China was open but medical care was somewhat limited, I had gone to a local hospital not an international one. They gave me some anti-inflammatory medication and some Traditional Chinese Medicine.

Again it was an episode, come and went but I started noticing a pattern. The time between flares was getting shorter and shorter and the pain more and more severe.

I was in and out of hospitals in Beijing and Shanghai (in China you don't have a family doctor - you just go to the hospital and see which ever doctor is available unless you get a specialist appointment). This was the first time I was told that the medicine I should take was mesalamine but that it was not readily available and I would need to order it myself. I was buying RMB 1000 ($150) worth a month in granular format but I was not really taking it seriously. I was still very ignorant to disease, its severity and just about anything related to it. Maybe it was a blessing in disguise as I tried to adapt to it without ever letting it take over my life.

The true spiral out of control started in maybe 2018-2019. My body just started to weaken, symptoms became daily, the running-to-the-bathroom urge was constant. Any roadtrips were peppered with gas station pit stops!!! My kids were born in 2020 and 2021-2022 were my low years. I lost maybe 20% of my weight, at my lowest I weighed 67kg and looked like a drug addict. Shitting blood and the yellow stuff was daily, knife cutting pain was constant, functioning normally would only happen around lunch onwards. Mornings were set aside to fight the pain, and go to the bathroom. Luckily these were also the COVID years in China so movement was somewhat restricted.

We moved to Italy at the end of 2022. In early 2023 I was seeing a specialist doctor and being observed; my flares during the period were not getting any better, but at least I had ready access to mesalamine and corticosteroids to fight the worst of the inflammation. After 2 more colonoscopies came the formal diagnosis of IBD and a pathway to biologics. I started treatment in March 2025 on infliximab with a constant intake of mesalamine to act as secondary defence.

I have to date (touch wood) taken well to infliximab. My body weight is back to normal and am in near total remission. All markers are back to normal and symptoms are under control. I had one flare for about 1 month and I have put it down to either stopping smoking for good this time or a bad infusion. The nurses were all sick that day. I don't care as long as the meds keep working.

The shitty part

Everyone's experience of the disease is different and everyone's symptoms are slightly different. Maybe because I was living in China I took a very different view of the disease (in my own ignorance at the time) and I always tried to work with and around it.

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

The worst is the feeling of isolation. Who do you speak to? What do you tell them? For a long time, no one. It is part of why I built ibd.wtf, somewhere to go when that is the honest answer. I remember one family trip I was constantly looking for a toilet. I became the butt of jokes that lasted for years. It wasn't until I was formally diagnosed that the pattern was associated to the disease.

How many arguments I had with my wife for bathroom use. "You always need the bathroom", "Control yourself" etc.... again all of this evaporated with formal diagnosis.

The feeling I got was akin to the boy who cried wolf. It was only when it was given a name and diagnosis that it became "real" for those around me. Honestly it was also a relief for me.

The fight

As much as I would like to say I didn't let it affect me. It absolutely did, where I held control was not letting it take over. I didn't change my habits. I am of the philosophy that you either "Live to Eat or Eat to Live". I never changed my diet of spicy chinese food and 白酒. Thinking about it rationally and this also came from a discussion with a TCM doctor. Why? Your stomach acid should break down pretty much everything and anything that does pass is more or less at the molecular level, it will NOT create the flare for IBD that is underlying but it may aggravate it. That was a price I was willing to pay.

I tried as much as possible to work with and around it. I would maybe leave a little later but I can count the times I changed plans for it. That is also a character trait... it's a disease, it's not an option so wallowing away in my own "shit" was not something I was going to do without a fight.

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

But that was my gamble, on my own body, with my own stakes. I would never hand it to anyone else as advice. Everyone's IBD is different. What I got away with might put you in a hospital bed.

Where now

My appreciation and knowledge of the disease has grown tremendously but I also remain a sceptic of a lot of advice in forums and even my doctor. Don't get me wrong the medical literature and studies are not what I discount. Where I draw the line is simple. How can you (my doctor or stranger) know more about it than me? I live it every day. Your knowledge is limited by your own experience and perspective and for IBD everyone's body, habits and lifestyles are different. For me I have taken their opinions, teachings and suggestions and adapted them to my life and lifestyle.

There are two facets to this disease:

1. The clinical aspect. The diagnosis, the drugs, the treatment and ongoing care.
2. The lifestyle aspect. The symptoms, the habits and the choices that affect you physically and emotionally.

The lifestyle aspect is yours and only yours to discover and forge.

Coming full circle I am working with Mirae Health to try to bring agency to IBD patients. Giving them the companion support to keep them sane and a tool to manage the disease.