[lobe]

I have Crohn's disease. First symptoms 5 years ago, just before I was about to enter my final year of uni. For the first 3 months I was pretty much bed/bathroom bound, lost so much weight and looked so weak that a few friends / family at first thought I had cancer. Next 6 months after I took off uni, drugs were only semi effective and side effects meant I couldn't do any thinking without getting a headache (i.e. I could watch a movie, but I couldn't play video games). Things then got gradually better up until now where normally I don't notice it, but it does flare up occasionally (every 6 months or so).

What I do:

1. Identify what triggers it.

Doctors don't know what to tell me apart from "take these pills / shots" as it is unique to every individual. However from trial and error I have found these key triggers: lack of sleep, lack of exercise, certain food choices, excessive alcohol, stress. Small slip ups on any off these are fine, but continual abuse over periods of days / weeks and it will flare up again. Nearly every flareup since I worked these things out can be traced back to a change in life patterns. Moving house, going on holidays, start of Covid (and closure of the gyms) etc. I've worked out the triggers and now I need to address them, which is easier said than done over a timespan of years.

Note for anyone who has a friend / family member with it: Initially, I tried everything under the sun with a possibility of working, and the only thing to fix things up were the drugs. Now I can manage drug free, but all those methods did sweet F-all until it was controlled with drugs (but every case is different). Send them a link to whatever method you want, and then never bring it up again. It shocked me how many people who thought they were doctors came out of the woodworks offering me crackpot theories and then were offended when either I didn't do it or it didn't work (oh you weren't strict enough, you didn't give it long enough). For everyone's sake, provide the information then shut up.

2. Address the triggers.

Food: Avoid overconsumption of dairy, wheat, sugar, alcohol (wine / beer are a lot worse than spirits, white spirits are the go to although I don't like them). A bit here and there is fine and in a normal week I'll have all of them, but it is when you are chaining days of them and they dominate your diet it becomes bad. Also avoid overeating in one sitting, as putting your stomach at max capacity seems to also be a trigger.

Sleep is obvious. Min of 8 hours, 8.5-9 daily is best

Exercise frequently, at least 3x a week. Cardio is ok, but it seems weight training helps the most. Of the list I feel this is the most infrequently mentioned by others, but has helped me a ton.

Stress: I deliberately took a job with a company that had a reputation of respecting work life balance. It is still a demanding environment, but you can choose how hard to push yourself. I try to keep to an 8 hour day but maximise how much I do in that time, and completely switch off after. I turned down a FAANG offer to work here, assuming I would be trading career / financial success for lower stress, but it has turned out better on all fronts (career, pay, stress) which was a nice bonus.

3. Plan ahead

Although I have it under control, I definitely feel like I have a lot less energy than my friends. I just feel my body using my energy reserves to constantly fight this thing and it is fatiguing, and is getting slightly worse every year. I don't want to be working when I'm 60, and have no idea if disaster will strike earlier.

Financially I'm focused on getting to a point where I can retire in around 10 years time, FIRE style. I love my work and plan to keep doing it whilst I still love it, but I need that backup plan covered. Previously I have had to take long periods off to rest up and heal, and during that time I did nothing remotely work related, didn't write a single line of code. I need to be prepared for that happening again.

Plan B is company stock options paying off which is looking more probably than not in ~4 years or so, and would make retirement more comfortable, but I'm not banking on a plan B.

4. Give up control

Control everything you can, and be indifferent to everything you can't. I wasted so much energy early on being angry about how things were, rather than using that energy to fix what I could. Easier said than done however.

5. (Bonus point) Get off the internet

Back when I was diagnosed I found various different groups online that I thought would be good to get some answers and see what other peoples experiences are like. Bad move. They are like news channels, reporting mainly the bad side of the experiences. Don't let your disease consume your life, let alone other people's experience of it.

That's all the advice I have. Bit late in the thread to be commenting, but hopefully a braindump will help someone.