Jess🐾

A sufferer daily with fowlers syndrome and painful bladder syndrome! chronic pain! Mitrofanoff 18.11.19 UAT 🦋 & CFS PoTS

[Jess🐾 @bladdercrap]

@Charter_UK
Please can you confirm if the actual bag is changing or the adapter for a night bag. This is for the Sensuramio bags urostomy.
There seems to be mixed information as to what’s changing and no one seems to know.

[Jess🐾 @bladdercrap]

@DPDUK___ No need to follow back thanks.

[Jess🐾 @bladdercrap]

@DPD____UK__ Then do deliver my parcel and the box is ripped down the side and opened?

[Jess🐾 @bladdercrap]

@DPDUK___
Your driver was supposed to deliver my medical supplies yesterday but failed to do so.
You need to prioritise medical supplies not let the driver just go home. I could see him on the map locally then heading back to the local depo!

[Jess🐾 @bladdercrap]

@DPDUK___ is this actually acceptable to deliver medical supplies like this??
Yet failed to deliver yesterday and the deliver it like this today 🙄least have some respect!

[Jess🐾 @bladdercrap]

@DPDUK___ what is going on??
Your driver was supposed to deliver medical supplies but 7hrs later decided as he’s running later he’s heading home.
Considering this is medical supplies I rely on daily I am not impressed.

[Jess🐾 @bladdercrap]

@Charter_UK

Erm I don’t think these bags should be doing this right?

[Jess🐾 @bladdercrap]

Thanks stoma for the 5am wake up call to a super leaky bag and wet bedding 😩
Have to be up in an hour and half no point going back to sleep 😩😩

[Jess🐾 @bladdercrap]

Nooo my stoma has shrunk in size and my current pre cut bags are not fitting properly damn it!
I can’t get samples as I’m so new post op! But I have 30 bags pre cut to size 🙄any advice 🙈

[Jess🐾 @bladdercrap]

Stents and stitches removed from my stoma! Was expecting it to be painful and it wasn’t!

[Jess🐾 @bladdercrap]

In all my years of being in and out of hospital I have never known this ward to be so noisy!!! It’s like trying to rest but in a kids park!

[Jess🐾 @bladdercrap]

Having my bladder removed tomorrow! Doesn’t feel real yet. Laying in hospital wondering if I should cancel the op 😂
1: lights on the ward don’t go out till 1am back on at 6am
2: it’s so stuffy in here my nose is blocked!
3: smokers coughing their guts up at all hours!

[Jess🐾 @bladdercrap]

The NHS have seriously failed and let me down! Urgent surgery which should have been done many months ago won’t happen now till mid next year! That’s over a year of waiting now! If UCLH weren’t such idiots and let me choose the other hospital it would be done by now.

[Jess🐾 @bladdercrap]

Let’s hope I have a better night and no sickness! There’s nothing left in me!

[Jess🐾 @bladdercrap]

The past 24hr have been brutal! From camping in the bathroom to spending it in A&E.

[Jess🐾 @bladdercrap]

I feel so unwell it’s awful! Awful tummy pains dehydrated for sure and I can’t stand up right! I know I need the hospital for fluids and pain meds but I can’t physically leave my bed right now! 😢my body hates being ill

[Jess🐾 @bladdercrap]

This fractured wrist is very painful 😭

[Jess🐾 @bladdercrap]

Possibility I could be saying good bye to my bladder in December.. but I’m not hopeful till I get that phone call and letter saying it’s happening… 🙄

[Jess🐾 @bladdercrap]

@DanielleMusiak I’ll get the job and they’ll have an op date meaning I’ll be let go from the job. :/ and it’s so expensive getting to London for another pre op! X

[Jess🐾 @bladdercrap]

What is wrong with the NHS!! Get me in for a pre op! Which runs out in 7 weeks 🙄
Then told I will have to have it re done and the op won’t be this year at all and some time next year.
Don’t waste my time and money coming up for appointments if you can’t get me in!

[Jess🐾 @bladdercrap]

@DanielleMusiak No back logs apparently, but they said it’s going to be September and now saying next year.
I’ve recently lost my job and was hoping it would be soon then I could recover.. then apply for jobs. Now I’m in limbo I can apply for jobs but then it’s going to be my pure luck..