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Waiting impatiently. NHS is so slow.

H

Harreh

Waiting to be admitted for IV steroids. In the mean time I get the full force of my Crohn's every day. Been over week since the date on the letter from doc to bed manager. Getting impatient now.

First went to my GP in January, then the endoscopy that officially diagnosed me with Crohn's was in September. What took so long?

Just wanted to moan about something. Just want to get into remission.
 
SarahBear

SarahBear

Moderator
Location
Charleston,
It does tend to be an annoyingly slow process! I'm sorry you're feeling badly. Do you have any idea how long of a wait it might be? Can you call and check?
 
robbo87

robbo87

Hope they get you sorted soon! they can be slow at times and frustrating but we are lucky to have it all for free I suppose. Which hospital are you treated at?
 
LondonSnow

LondonSnow

My sympathies. I first went to my GP about my issues mid July, but I didn't get to have the relevant tests done on me until last week.

And the Tories want to slash their budget?
 
hainman

hainman

I waited almost a year for DX and then most things went well.
I have had to wait the odd while for a scan or something but as Robbo87 has said.we are lucky its free....if i had to pay i would be rooked,all my meds dont come cheap,had 3 colonoscopys and an endoscopy this year alone so im looking on the bright side....
I hope you dont have to wait to much longer...
 
StaceyQ

StaceyQ

Phone the doctor and say nothign has happened yet, i do if i really need something then they get fed up and will bring you in, they cant treat you like this, its not as if it will just go away and calm down by itself.

Call them today and get it sorted.
 
Laura Dawn

Laura Dawn

Its good to vent and this is the perfect place, since most of us have been there.

Do they have you on self administered steroids while you wait for the IV? I've been on my share of steroid pills, never the IV. IV's get into the system so much faster. How does is work in the UK? Can you call and ask when they forsee this being approved? I'm curious how the system works. Hopefully you are on something to help in the meantime. Please keep us informed.
 
StaceyQ

StaceyQ

on the NHS it is all free, but you do sometimes have to wait a while. There is no approving at such just requests to be done.

You do have to badger them to get things done or they do it in there own stride x
 
StaceyQ

StaceyQ

on the NHS it is all free, but you do sometimes have to wait a while. There is no approving at such just requests to be done.

You do have to badger them to get things done or they do it in there own stride x

:heart::heart::kiss:
 
Kip1

Kip1

Hi Harreh

Are you on any medication at the moment? Do you have a GI you can contact or a Crohn's & Colitis nurse. I find the nurses help invaluable as they seem to get things done quicker.

I would have thought they could have given you steroids orally until they can get you in to hospital.
Perhaps you could complain to the patient liason service as they can sometimes get things moving.
 
H

Harreh

Yeah I've got oral steroids for now. Helps a bit but the docs want to try IV's.

To be honest I'm glad my diagnosis was successful.

I've been spending this time figuring out what foods influence my Crohn's and eating way more healthily. So far I've found that mince is a bad choice and fruit is a great choice.
 
Kip1

Kip1

Hi Harreh
Its great you are figuring out which food suits you. I am sorry about the answer phone for the bed manager. I always find its better to go through to the Crohns & Colitis nurses.
If you feel you really cannot cope at all then maybe A&E would be a better option for you. It may speed things up.
Let us know how you get on.
 
H

Harreh

Thanks, should be fine really. Just getting fed up of being woken up during the night to go toilet. Seriously messes with my dreams... very bizarre to wake up in a bathroom feeling terrible due to diarrhea.
 
highlandsrock

highlandsrock

Location
Surrey,UK
Getting treatment/consultations on the NHS doesn't have to take a long time but you do need to take control. I've taken to emailing my consultants when something needs actioning or co-ordinating. In the last 11 days I've had 5 appointments. From those I've ended up with needing a liver biopsy and another colonoscopy and they have both been booked before Christmas.
 
M

madferrit

Harreh said:
Thanks, should be fine really. Just getting fed up of being woken up during the night to go toilet. Seriously messes with my dreams... very bizarre to wake up in a bathroom feeling terrible due to diarrhea.
Click to expand...
Poor you! It can move very slow in hospitals i know how you feel. Which hospital do you go to? Im in Manchester to & i go to Wythenshawe hospital. They are great in some areas but very slow in others. Try to get your GI doc to chase these steroids for you, you have enough to deal with right now bless you
 
Laura Dawn

Laura Dawn

Do you feel comfortable that your GI is doing everything in his or her power to help you get the steroids as fast a possible? I had a GI that couldn't get anything approved for lack of trying . I changed GI's and he got more done in a month than the first one did in four. I had my first night of getting up mulitie tones and it was awful. I've been pretty stable for a bit over a week. It's life altering to be up so much. Hopefully you have a healthcare advocate that is helping you . Hugs
 
highlandsrock

highlandsrock

Location
Surrey,UK
When I was waiting for Infliximab to be approved by the local Primary Care Trust I got fed up with how long it was taking so rang the hospital's Chief Pharmacist. I apologised for contacting him directly, explained the situation and asked if he could help me. He approved the drug within ten minutes and a few days later I had my first infusion. It really is worth making a fuss if you don't think things are moving fast enough.
 
Laura Dawn

Laura Dawn

Nice! That's how I got after months and months. It sucks having to be that person but sometimes that person is the only only one who gets help unfortunately.
 
H

Harreh

Just phoned up and I got an ambiguous "hmm, yes. Well there's nothing available I'm sorry." along with a "we'll call you back".
 
H

Harreh

madferrit said:
Poor you! It can move very slow in hospitals i know how you feel. Which hospital do you go to? Im in Manchester to & i go to Wythenshawe hospital. They are great in some areas but very slow in others. Try to get your GI doc to chase these steroids for you, you have enough to deal with right now bless you
Click to expand...
Stepping Hill in Stockport. The Christie Hospital in Didsbury is also nearby but never used it.
 
H

Harreh

I think it does. Don't know, feel really low on energy. Right now I feel malnourished rather than Crohn's. Been weighed at 40kg.. that was a scary moment. Pre-Crohn's I was 60kg.

Still in the ward, not sure when I'll be out though.
 
Laura Dawn

Laura Dawn

Hey there, have they said how long they will keep you there on the IV?
Have they checked your B12 levels? I'm sending positive energy your way! Hang in there!
 
H

Harreh

When I came in they said 'till Monday but I bet they keep me longer.

They're not checking my B12 levels, I don't think. Did my bloods when I came in and regularly do blood pressure.

Thanks Laura! :)

I know it may seem a bit rubbish to be stuck in a hospital... especially on the holidays! But this is progress for my treatment.
 
Laura Dawn

Laura Dawn

Nope, doesn't seem rubbish at all! In fact , sounds like you have a really positive attitude. It will be a great Xmas gift if they can help you feel better!
Keep us posted! Do you have friends and family there to support you as well?
 
H

Harreh

My parents come every day, bring me various things from home as I remember what items I could do with. Juice, too.

And yes! Positive attitude is essential. Really no need to make this worse for yourself.

Lost a fair amount of blood yesterday. What a nightmare. Low on energy today but eating and drinking well to keep up.
 
H

Harreh

Had an MRI scan not long ago. God the drink they gave me was vile. Utterly, utterly horrendous.

They should get back to me within 48hours so guessing I'll be out tomorrow most likely and I believe the plan is to move on to humira which looks cool.
 
highlandsrock

highlandsrock

Location
Surrey,UK
Hi Harreh

Sorry to hear you had a bad day yesterday. Sounds like you've been in the best place even though it was Christmas.

I know what you mean about losing weight with Crohn's, I dropped to 54kg at one point which isn't good when your a 6ft male. Once they get you sorted you'll soon get back to a comfortable weight. I'm pushing 90kg now!

Keep the positive attitude going.

Regards, Nigel
 
H

Harreh

Nice, how long did it take to see improvement?

They've been giving me supplements while I'm in hospital. They certainly give me more energy I reckon. Very glad to have been in hospital as the Crohns really has been at it worse, coincidentally.

Been keeping myself occupied with producing music but it's reached the point where I need to listen to it on speakers at home. Plus all the alarms intrude far too much.

So yeah I've got an infliximab infusion today and I believe the plan is to discharge me. Finally.
 
Kip1

Kip1

Harreh Im glad there are finally plans to discharge you. I do hope you have a quick follow up to check your progress after you leave hospital.
 
StaceyQ

StaceyQ

glad they are finally going to discharge you and sorr it has been such an ordeal, Hopefully the crohn stays at bay now x
 
H

Harreh

So I've been at home for some time now. Mostly at home and in bed.

Didn't have the infliximab and instead they discharged me and arranged for humira to be delivered to my home and for a health care nurse to turn up and show me what to do.
The nurse should be here on Wednesday.

I preferred the idea of humira over infliximab as I wasn't too keen on the idea of coming in to hospital for the transfusion. Self injection seems like the way forward. It also meant that I got to leave hospital sooner :p.

I've also got these proper energy drinks to help with my malnourishment. Damn these things are intense work on the digestive system! Can be rather unpleasant, especially trying to get three a day down.

So yes, doing ok despite being mostly incapacitated. Just gotta wait that little bit until Wednesday, right? No problem.
 
H

Harreh

Been loaded up with 4 shots of humira earlier today. Damn, that first shot was like being punched in the abs. Much preferred the legs.

Also stopped taking my supplements since they just put me in bed feeling at unease all day and make it really difficult to eat. My GP agreed that I could wait for the humira to kick in and then get back on it.

Feeling much better. Mostly from the lack of supplements but I'm just really satisfied now that I've reached this stage. This is where I've wanted to be in my treatment since my GI put me on the ward's waiting list.

Now to rest, try and sleep well and let the humira get to work!
 
H

Harreh

Gotta say, humira is one fantastic drug. Sorted me out completely. I basically don't have Crohn's anymore... and all I gotta do is inject myself fortnightly? Cool.

The Crohn's has left me underweight, however I'm putting weight on quite well. I've put on 5kg since I left hospital.
Spend most of my day feeling tired and hungry. I eat loads though and I'm still hungry.
Just need to put some weight on, get my energy levels and sleeping sorted.

So that's it!
 
H

Harreh

Yeah, started on 25mg/day, now on 15mg/day.
Didn't realise steroids made you hungry. Well, whatever. Gotta be a good thing when you're underweight. It's a nice change, since it can be so difficult to want to eat with Crohn's sometimes.
 
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