Hopefully you are handling the UC okay - I was misdiagnosed until I was 18 and was in a pretty critical condition by that stage and didn't respond to any of the drugs available at the time. Handled it by myself through diet (but it was not ideal) until a few years ago and now get Infliximab IVs every two months to control it.
From a diet perspective, cutting out as much carb as possible helped me a lot.
Ya it's well controlled now thankfully, similar to yourself, infusions every 6 weeks. Thankfully I haven't had to do a round of steroids in a good while... those are awful things! Impossible to sleep on the initial high dose 🙈
I tried the specific carbohydrate diet which was a book I was recommended and it worked well, but found it unsustainable long term, as you want to live too..
Good to hear. I have mine this week - do you get a handful of days of tiredness, headaches and thinking issues after?
"Life without bread" ?
It worked for me, but the carb level I needed was so low, I couldn't maintain it either. But, it did give me the chance to improve it and then control it better. I gave that book to a few people over the last two decades with milder symptoms, and after a couple months of low carb, they could introduce again and it was okay. I think in my case, too much damage has been done for too long.
The steroids almost killed me. It gave me pancreatitis 6 times in a year and on top of that, it was eating through my hipbones due to the high dosage I was given.
I never thought I would make it this far in life. :D
No, I actually dont get any side effects luckily, although I did get sunburnt today which is a bit stupid and irresponsible as too much sun is a no no on the infusions, but I love the pool and beach while on holidays with my three sons..
That's nasty as man... Hate those Pred little devil tablets with a passion, but have not had near the hardship you've had with them hearing that.. They basically blitz your entire gut microbiome... kill all the good and the bad bacteria... fair enough they stop the inflammation, but the collateral damage is horrendous... The Infleximab was a god-send for me..
I didn't know about the sun! Luckily, I have a natural tan ;D
I was resistant to it at the beginning, but it has made life much easier for me and now I am able to travel far more freely than before.
Enjoy the holidays! :)
It's like readinf my own thoughts... I argued the thing with my consultant foe over six months before I'd agree to it, as I was trying to use combination of milder drugs and diet... When I eventually came around to his way of thinking, I wished I'd done it sooner as the change was unbelievable... 🤞🤞 it will last a long time for both of us....
🤣🤣🤣