u/Outside-Issue6896

My body can take some serious punishment, but this disease has pushed me to my limits. In the last 6 years I've been diagnosed with various diseases, iron overload, lyme disease, severe covid that needed a hospital stay, I even had pneumonia for the first time ever last year, 5 months later I was diagnosed with severe pan colitis and nothing even comes close to being as bad as this. Nearly 12 months now since diagnosis, and my body is telling me I can't take any more.

It's not just the UC though....

It's the medication, it's also making me sick.

It's the lack of sleep.

It's the worry, about numerous things, but number 1 is how quick can I get to the toilet.

It's the cabin fever because you are confined to the house.

It's the constant harassment from my employer for not attending the office whilst flaring

It's the unsolicited suggestions for treatments and diets

It's the comparisons with IBS or just some food that doesn't agree with someone

It's the battling with the NHS for the right care

It's the feeling vulnerable when you are seriously ill. Something I have never felt before having UC.

It's the feeling alone, because no matter how much support you have, this is only something you can deal with and no one can actually begin to comprehend the effect it has on you.

Anyway, I will continue to fight on, I have a family to look after, so let's f'ing go 💪✊😁

OK, I was going to ignore this, but family have been saying to let my IBD team know.

1 hour after having my first dose of adilumumab I started to feel dizzy, I had headache, and was generally feeling strange. I then walked downstairs, got to the bottom, then did a 180 turn in to the hall, completely lost my balance was hit the deck. Got up, carried on, got a drink from the kitchen then sat down, everything was spinning, balance was off, I had some minor tension in my neck. Slowly recovered over the next hour or two, but was not worried. For 2 days I've just had bad fatigue and increased UC symptoms, which can be expected.

Is it anything to worry about when considering I had an adverse reaction from Infliximab on my third dose, that was more severe in every way, and had headache, everything spinning, head dropping, extreme tension in my neck and back, heart palpitaions 😬 The more I type the more I think I do need to feed it back to my IBD team.

Has anyone been granted full time working from home whilst on biologics, or at least during peak flu season in the UK?

Anyone else's IBD nurse piss them off or speak to you like a naughty kid? She really doesn't like me being in control of my treatment. I control the timeline, what I take and when, and I don't like knee jerk reactions to any symptoms, so I'm not one to jump straight for steroids, but she's always pissed off when I ask for help. I really don't know why she does the job.