Keep us posted mate, been following your posts recently and have been wondering how you were doing. Do your best to stay positive, this is just a blip.
Just a quick one to express my appreciation for your posts, I had read them through and considered them. Getting to talk to people about our condition is a fantastic outlet here and even though I wish the diseases didn't exist, I'm thankful this forum exists.
I've elimited caffeine from my diet for the last 9 days (had a blip over the weekend, oops), and processed sugar starting from a couple of days ago.
I'm obviously not an expert to treating my body as a project of sorts is fascinating. I only wish we could have more tests done at home, like inflammatory markers, accurate iron checks, etc.
Really chuffed that I’ve offered something to think about, thanks mate. I tend to go off on one so sorry they’re long. I totally agree though, having other people who actually understand can be really helpful, mentally, and sometimes, you can pick up something that helps you physically too.
Coffee and fizzy drinks were the first thing to go for me too, I miss caffeine, but I do
not miss what it does to me! Alcohol is a bad one too, at least for me, and I had to stop it anyways for my liver. Herbal teas are good for me, they help cramps, energy, mood and pain, and they hydrate well. If you’re drinking them, check you aren’t enjoying ones with sweeteners or flavourings of any kind. For me It’s nice to have something I can look forward to making and enjoying. I have a bunch of loose leaf / organic jobbies to choose from, my favourite cup and a dope infused. God how life has changed!
I really wish you well mate, and hope you feel better ASAP. If you do need any help or advice on diet, I can offer some general info for you if you need it. We can’t prescribe on here, but if you want to discuss anything at all, we’re all here.
Tests at home would be awesome. What’s your GP like? The reason I ask is that I feel quite lucky with mine, they appreciate we know our bodies best and if I want specific blood tests done, they will generally do them for me on request during a visit. Worth considering if you are worried about anemia, malabsorption etc.
I’m seeing the gastro team today to get the infliximab underway ASAP. I’m currently on intravenous steroids which have helped with cramps and pain but not yet the urgency or frequency but I only started yesterday so still early days. Also having an iron infusion today so hopefully that will help.
Bit bored in hospital but the staff are really nice and helping with the low moods.
Sorry to hear you’ve had to go in mate, best place for you though! Anemia is no fun at all, I’m sure you’ll feel ten times better when they get your iron up. I’m really happy and excited for you going on Infliximab. I didn’t try it, but the type of immunomodulator I eventually ended up on, similar to yours, was a game changer. I know several people for whom Infliximab returned their life almost to normal. It will take time though, as I’m sure they’ve explained. Wish you all the best with it, keep us posted.
Quick tip: prepare your entertainment kit
These days I have a gaming laptop always ready, charged headphones and xbones controller, and plenty of new series / films on my phone and an external drive; never know when an extended stay is on the cards
I have a small extension in there too, in case there’s only one socket I can pinch.
Quick update on me: Lots of liver tests incoming and seeing a new specialist in July. Had some terrible bouts of pancreatitis so I’ve had to go through the old starvation and pain killers protocol. My neck and back are a mess, so I’m on diazepam and codeine for that too. Colitis is still in check, although I’ve had some upsetting news, and like many of you, distress sets me off. But I feel happy. The Mrs makes sure I can’t be a miserable arse, and even though I’m in bed a lot, I have plenty of entertainment (not like that you filthy animals
)
Thanks for sharing your stories chaps, always good to know we’re not alone.
