I am a longtime lurker who is so, so grateful for this community and all the advice and resources that can be found here.
I was diagnosed with Ulcerative Colitis (seems to be limited to Proctitis, for now) in May 2017, a year or so after the first flare up that happened in May 2016. When that first happened, I had no idea what was happening to me and, truth be told, put off going to the doctor than I should have.
Flare no. 2 came in January 2017 (not great, and lasted three months or so but on balance not as bad as Flare no. 1)
Flare no. 3 happened in January 2018 and stayed for about a month - this time I knew what it was and what to do (and what NOT to do/eat), which helped. I also happened to have a checkup appointment in February. Whilst it was the easiest to deal with physically, I found this by far the hardest mentally: with it came the realisation that this is now part of my life - it’s not going away. I’ve been struggling with that in recent weeks, though a bit better about it now, as I decided to stop hiding it and actually tell more people about it.
The thing that’s getting me down today: fatigue.
I actually went to the doctor a while before the first flare “fireworks”, shall we say, got going because I was just SO tired. Not tired, but utterly fatigued. She tested for underachieve thyroid but it came up fine. Now, looking back, I think I see it was part of the dormant UC.
I have felt drained and fatigued during the flares (because UGH. And my best wishes and solidarity to everyone reading this who is currently flaring).
But I also have had it between flares. I had a very bad month or so of fatigue in the autumn, which got me down as I had managed to ringfence of some time for me (I am a freelancer who in recent years has often worked from home) and then just could not use it. It was a good lesson in realising that one shouldn’t always use all the energy in the tank.
The past few days, whilst the flare is seemingly “gone” (well, it never goes, does it) I have been utterly wiped out. I set my alarm early today to go to the library - and then I spent the morning in bed. This was possible today but it won’t be soon, as I have a new office-based project starting. And whilst it was possible, I still feel upset and ashamed and frustrated at not achieving what I wanted to do.
So I guess I wanted to ask about people’s experiences during flares, in between flares, how you deal. And also say hello!
I live abroad (British living in Berlin) and treatment has been good here and I have a good gastrologist but nonetheless, doing all this in German can be isolating sometimes (I can get by but am not fluent) so, again, I am really grateful that I found this place.
As for medication: I used Cortifoam (DE brand name: Claversal) for a couple of months last year and then had 9+ of nothing. Turns out that was a misunderstanding and the doctor never intended this. So he has now advised using every 3 days. I am doing it but, meh, don’t feel great about it.
Anyway. That’s a lot of words. Here’s the main one: Hello!