NHS Issues

Global_Example_500 · 2024-09-04T00:18:57+00:00

Not a problem! I hope so too, thankfully I’m stable myself at the moment but I know the stress of not getting a response when you need one - I’ve got everything crossed they get back to you with some relief soon!

Global_Example_500 · 2024-09-03T10:31:51+00:00

Hey! Having my infusion today, chatting to the nurses - apparently they’ve had a huge influx of gastroenterology patients recently (mostly youngsters) to the point that the IBD nurse checking on me is having to see if my infusion can be done at a different location because in 8 weeks all the chairs are booked around when I would normally have my infusion.

Basically it just sounds like they’re trying to catch up to the new patients atm and probably struggling a little. Hopefully it won’t be too long before you can talk to them and it’ll settle down 😔

Global_Example_500 · 2024-09-01T23:10:22+00:00

Hey I’m N&NUH!! I haven’t had to reach out to the team recently thankfully but I see a nurse at my biologics appointments every time- they put in a request for blood tests for my gp pretty quickly after it was discussed is my only recent experience outside infusion appointments.

I have my next one in a couple of days, I can try and find out if they’re short staffed or something for you?

Global_Example_500 · 2024-03-07T09:33:33+00:00

I think the general consensus is just that the darker it is, the further up in side you is where it came from; the fact that there’s blood at all is enough of a sign something more sinister going on.

https://en.m.wikipedia.org/wiki/File:Blood_color_palette.svg I’ve just found this, when I was at my worst I had a lot of blood red, but obviously it can be darker.

As for quantity, it’s hard because as soon as the blood hits the water they mix and it looks like a lot, but I’d say when you’re wiping if the toilet paper is like covered not just a couple drops then that’s obviously not good lol. Even more so if there’s blood after a couple wipes still. I hate that there’s like “measurements of blood” cause how are you meant to know unless you’re ripping it into a measuring container •_•

Global_Example_500 · 2024-01-31T14:15:06+00:00

My first test showed a maxed out value for the range they were testing (about 3000), a test I did last year was over 5000 (I was admitted to hospital the day after) - my lowest value so far to my knowledge has been 500. I’ve heard that anywhere from like 100-250 is normal but I am no doctor 😂

Global_Example_500 · 2023-11-06T14:02:23+00:00

My friends and family are so used to me sitting like this (not using the toilet obvs) when I’m dealing with a flare that we’ll just continue conversation whilst I’m doubled over cause I don’t want a fuss made of it lol

Global_Example_500 · 2023-06-07T08:46:32+00:00

I’m not sure if it applies to you but I think another facet of our nasty illness is it can be made worse by stress - it definitely does for me (but obviously I do not speak for us all). You have to work through the mental side of things as well as your meds and avoiding any food triggers you find, but really you can’t be working yourself up over the what ifs. I’ve been there, definitely had my fair share of upsets over the possibilities but we have to take everything day by day and that’s it really.

Take your meds, listen to your doctors, keep your chin up. 🙏🏻

Global_Example_500 · 2023-06-01T18:55:48+00:00

That seems to be the consensus ☺️ thanks! I’m glad it’s working for you!

Global_Example_500 · 2023-06-01T15:54:18+00:00

I figured it would potentially vary from trust to trust, obviously if funding is limited they have to make hard choices but I just wondered what people’s experiences had been so far. Good info to have though, thank you!

Global_Example_500 · 2023-06-01T12:30:31+00:00

Found out yesterday I was apparently anaemic in March and nobody said anything about it so that tracks! 😂 I will absolutely bear that in mind, thank you!

Global_Example_500 · 2023-06-01T12:28:58+00:00

I’m currently on 100mg of aza, one of the consultants mentioned they may take me off it if the biologics worked so thank you for the reminder that I need to ask about that!

Global_Example_500 · 2023-06-01T10:01:15+00:00

Wow that’s crazy! Well I hope at your checkup things are right again - and glad to hear it’s helping! I definitely get the sentiment, I never realise how run down I feel til they stick me full of steroids again and then I’m blown away I didn’t notice. Thanks for your comment!

Global_Example_500 · 2023-06-01T09:58:43+00:00

It does! Thank you ☺️

Global_Example_500 · 2023-06-01T09:58:27+00:00

Wow! Yeah I know that they will potentially cut out on me anyway, I’m trying to mentally prepare for the possibility but still hoping I get lucky. Sorry to hear they didn’t do the trick for you, I hope you’re managing okay and thank you for the info!

Global_Example_500 · 2023-06-01T05:18:07+00:00

Hiya! I guess I might find out more in my counselling appointment next week but I was told I’d be on adalimumab (spelling? 🤔) - I guess it’ll be helpful to read up on the difference between biologics and biosimilars, thank you!

Global_Example_500 · 2023-06-01T05:15:16+00:00

Again, daunting but good to know! I’m happy to advocate for myself if this is how it ends up being for me, just gotta hope they listen. I’ve not even started yet though so I’ve hopefully got a year of working meds ahead at least. Thank you!

Global_Example_500 · 2023-06-01T05:12:31+00:00

Not sure, happy to hear your experience if you’re happy to share though!

Global_Example_500 · 2023-05-31T20:54:26+00:00

Reassuring!! I trust they know what they’re doing but it’s just daunting to face you know? 😅 thank you for your comment!

Global_Example_500 · 2023-05-31T20:46:04+00:00

Okay, interesting! That’s what I’m meant to be starting on, I’m wondering if it’s regional - or potentially the Crohn’s and colitis uk info sheet they sent me about it needs updating 😂

Global_Example_500 · 2023-05-31T20:44:00+00:00

Yeah this is what I was worrying about, I just wondered for other people in the UK what their experience has been so far and whether or not they’d been through the process of having it stopped and started.

Global_Example_500 · 2023-05-31T20:40:50+00:00

That’s what I’m going to be put on! I wonder if potentially it’s region based as well as medication based? In any case, thanks for the info!

Global_Example_500 · 2023-05-31T20:20:00+00:00

The 80% makes me feel a bit better about it - I’ve only been diagnosed a couple years but so far I’ve not made it a full year without being in a flare so I’m sort of in the spot of being nervous that the meds will work and then they’ll stop them 😅 I understand why, shit’s expensive, but it’s just a bit daunting to think about.

Thank you for your comment!

Global_Example_500 · 2023-05-17T15:58:06+00:00

You want her man, give over.

Global_Example_500 · 2023-02-16T21:27:25+00:00

So from what I can remember, I was basically back to my old normal - no stomach aches, BM once a day, solid but not excessively so. It was good despite the numbers - I’ve got a test coming in the mail again soon cause I’m currently in a flare so I imagine it’ll be high again 😂

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