Not sure where to post....

[misspeeps]

I spoke to the hospital again today and said I don't think I can handle feeling this way for another two weeks till the eua on Christmas eve. The ibd nurse said they are no longer sure I'm under the right care or section and until the test they won't know. I asked what section might I be under and she replied 'the surgeon talked to you the other day didn't she' and that was it!! She said I no longer need to talk to the ibd and gastro doctors atm but the surgeon. So confused as to what this all means.

They Have left her a message to call me

I don't know what I expect anyone to say. I just wish I knew what they are thinking x

 

[muppet]

It sounds like that nurse is a real piece of.... work. I'd file a complaint if you have any channel for that. Her dismissive attitude and insensitivity is inexcusable.

Definitely call the surgeon and try to get a straight answer there. Is there any chance your primary doc could shed any light or help advocate for you with these specialists?

 

[Clash]

I don't have any advice I just wanted to send you some hugs and support! I hope you get answers soon and maybe you could contact your GP and see if he give you a straight answer about what the surgeon is thinking with the deeper biopsies. Hugs and double hugs!

 

[misspeeps]

My regular gp is awful. Whenever I see them about my bowel issues I get told they can't do anything and I Have to call the hospital. I have had real bad luck in regards to help with a diagnosis..it's been going on for 11 years and they are only just taking it seriously because they have finally seen what they have seen.

Muppet- I think the ibd nurses are getting fed up of me as I'm constantly calling but I'm in so much pain and loosing so much weight xxx

 

[muppet]

Too bad for them, it's their job to take your call.

 

[Earnellzwifey]

I am sorry that you are in so much pain and that you are not getting the help you need. I hope that the surgeon calls you very soon and give you some answers. I do not know why so many health professionals are so ready to dismiss off people when they are in so much pain. I would put in a complaint about how that nurse treated you also if you have that option available. ((((((HUGS))))))

 

[highlandsrock]

Hi Misspeeps

Sorry to hear you've had a bad experience dealing with your GP and the IBD nurses. GP's can be a bit variable but IBD nurses (and stoma nurses) usually choose to do their jobs because they are extra sympathetic to patients going through the sort of uncertainty and pain our particular disease involves. Have you thought of being treated by another hospital. I know it's easier to talk about doing it than making the change but it might be worth it. I moved from my local hospital to one of the top London hospitals and the care is excellent.

Good luck in getting sorted out before Christmas, eleven years is too long

Regards, Nigel

 

[Danico85]

Try taking 4 teaspoonfulls of manuka honey for the pain. I had the same and it pretty much soothed it and it never returned.

im not some creepy honey salesman btw. just telling you what worked for me.

give it a bash!

Nicky

 

[Astra]

Hiya

Nigel's took the words right outa my mouth!
You need to move hospitals, 11 years getting nowhere is appalling!
As a UK citizen it's your right to choose where you are treated, this new initiative came into force in 2009.
http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx
speak to your GP, he may be horrible but he has to comply. If you don't get anywhere phone PALS
http://www.pals.nhs.uk/
you are the captain of your own ship, don't take any crap off anyone!
good luck
Joan xxx

 

[highlandsrock]

Right on sister! Patient empowerment! In the States they have e-patients to help fight the cause but I haven't found anything over in the UK that mirrors it. Any thoughts?

I certainly agree with "you're the captain of your own ship". Over the past 3 years I've changed from a passive patient to an active one, and it makes a big difference. I think a lot of it comes with age and confidence as I would never have said boo to a doctor when I was younger. Nowadays I treat my consultants as equals, not superiors, just professionals who have a greater expertise in their particular area. If I want clarification of something I'll email them directly. So far I've met with a good, positive response, hopefully one of mutual respect.

When I did feel let down by a consultant I let them know and moved on. Unfortunately I had reason to encounter them again this summer (5th June) when rushed into our local hospital there was no backing down. A very frosty atmosphere - and guess what - I recorded it for posterity - http://goo.gl/IcdBl

 

[Astra]

Well done Nigel!
These people are not Gods and what they say is not Gospel, years and years of listening to verbal diarrhea from some doctors gave me the confidence to be my own health advocate ; the day I finally woke up and thought I'm not taking it anymore.
I'm certainly not doctor bashing, my consultants are awesome, so is the hospital staff.
But when some 2 bit nurse has the audacity to to undermine a doctor, I see red! I have the same contempt with GP receptionists, unless they've had 5 years training in the medical field, I tell em to frig orf! But then I also know they're only doing as they are told!
Dunno about e patients, but I'm part of a patients forum here in my town, which seems very similar, advocating for better care and awareness of IBD especially.
I enjoyed your blog Nigel xx

 

[motheroftwins]

I hope you get this worked out. Feel better soon!

 

[LisaL]

I hope you get answers soon. What concerns me is that someone has concerns about your health that they are not sharing with you. It is not acceptable to withhold legitimate medical concerns for a patient... You have the right to know. Please make sure you follow up with the surgeon who should have sais something to you (at least according to the nurse).

Good luck!
Lisa

 

[misspeeps]

Thanks for all your replies <3
I have spoken to people left, right and centre today. I couldn't speak directly to the surgeon but I HAVE got my surgery moved from christmas eve to next wednesday (which is something!)
Ive also been put on morphine for the pain and a anti spasmodic medication beginning with B- cant remember the name of it but I have had it before. They are hoping this keeps me till I see them next week.

The IBD nurses I have spoken to this morning have said they cant help me really as their area is 'medical' and im under 'surgery' LOL sounds ridiculous doesnt it xx

 

[highlandsrock]

Good luck with the surgery. If the IBD nurses can't help is there someone like an Enhanced Recovery Nurse who can take you through what happens pre and post op? When I had surgery it was the ERN who co-ordinated everything (or rather would have done if she hadn't been on holiday)

 

[misspeeps]

I have a pre-op assesment on friday so Im going to hound them into telling me just exactly what they think is going on. Even if its 'it could be this or this or this' atleast then I will have an idea of what they are looking for!xxx