Frustrated!

[Kers]

Went to my practice nurse to get bloods taken this morning and she could see I'm in agony and looking a lot sicker than the last time I was in.

She knows I'm still waiting for the hospital to tell me what's happening so she decided enough was enough and called my consultants secretary. I'm still on no treatment and in agony. Back and forth to the toilet up to 20 times a day.

I called the secretary in October and she said my notes were on his desk and I would hear from him soon. It's now December and not even an appointment lined up for me. All I want is information on whatever Drug Trial he was thinking about so I can make an informed choice. The other option was the ASTIC trial in Edinburgh but he's been talking about that for a year.

He has said Surgery would be complicated but I'm really at the point where I will consider complicated. I just want to be able to be able to function and be a mum and wife let alone finish my studies.

The secretary told the nurse that she would speak to the consultant after his ward round today and they would look at my blood results this afternoon. But no guarantee someone would get back to me today. If I start throwing up again like when I was admitted in September/October then I will go straight to A & E! I just don't want to be in hospital over Xmas.

Sorry Rant over.

 

[Nica]

Wow. Can you see a Different G.I. Doctor? That is insane. If you are having that much D I am positive you are seriously dehydrated along with other things. If they don't get a hold of you soon I would get to the E.R (A&E??).

I have been at the end of the treatment scale without a surgical option before, my docs put me on pain meds (opiates) which treated the pain and D. Made me able to function at some level. I hope you find some relief soon. Have you looked into stem cell treatment? I think there are a few places doing it in the states now, maybe one will be able to help you?

 

[Kers]

Wow. Can you see a Different G.I. Doctor? That is insane. If you are having that much D I am positive you are seriously dehydrated along with other things. If they don't get a hold of you soon I would get to the E.R (A&E??).

I have been at the end of the treatment scale without a surgical option before, my docs put me on pain meds (opiates) which treated the pain and D. Made me able to function at some level. I hope you find some relief soon. Have you looked into stem cell treatment? I think there are a few places doing it in the states now, maybe one will be able to help you?

Unfortunately I can't as I don't have private health care and he is the best there is as I have already dealt with other G.I. Docs. He is the best and I do trust him but the pressures of Funding cuts and clinic hours being cut I understand that he might be busy and I'm not the only person on his case load but to wait so long for some answers and to be fobbed off all the time is so frustrating.

To get on to Stem Cell Treatment here he has to refer me and the patients he referred in January this year have still not started treatment yet which is crazy. He also has to get agreement from the Hospital board to fund the treatment at £64,000 a go. I personally think if it works it would safe them so much as I am on average in and out of hospital 6 times a year over the last 5 years.

I have tried Opiates but I am allergic to most painkillers and the reactions out weigh the pain. I'm resting up today and if it gets worse I will be turning up to the Emergency Department over the weekend. hopefully it won't come to that.

Thanks for your support, I really appreciate it.

 

[Kazters]

i had the same problem i saw my consultant (i assume at the same hospital) in April she orderd more tests which i had first week in May and was left all summer - kept phoning both me and my GP to chase it up and was told letter was in the post, took me colapsing and being in agony and having to get emergancy gastroscopy for her to pull her finger out. because hte tests in may had only shown mild inflamation in several spots she thought it best to wait and see - but that was no good with no treatment, pain and symptoms. but thankfully because of this last flair i have new treatment.

I agree if you are no better still being as ill as you are go to casualty of nothing else its better now than being in over christmas! and it will force them do pull there finger out and help you! xxxx

 

[Kers]

i had the same problem i saw my consultant (i assume at the same hospital) in April she orderd more tests which i had first week in May and was left all summer - kept phoning both me and my GP to chase it up and was told letter was in the post, took me colapsing and being in agony and having to get emergancy gastroscopy for her to pull her finger out. because hte tests in may had only shown mild inflamation in several spots she thought it best to wait and see - but that was no good with no treatment, pain and symptoms. but thankfully because of this last flair i have new treatment.

I agree if you are no better still being as ill as you are go to casualty of nothing else its better now than being in over christmas! and it will force them do pull there finger out and help you! xxxx

It just seems you have to be at deaths door to get anywhere. I see Dr Potts but I have seen the other two. Don't think much of the registrar tbh. IBD Nurse is lovely though but he can only do so much.

Well if I get any worse I will go straight to Casualty or wait till Monday and get my GP to refer me straight to 6A. I'm just fed up.

What treatment are you on just now?

Nice to talk to someone who knows what that place is like.

 

[gmm]

heya folks, ive been back and fore to raigmore over the last 10 years, seeing dr potts and david armour,, if your really in a bad way get to the a&e,as this will bring you to your dr's attention, plus its best to bee seen anyway just in case,, theres always your so called evil friend, prednisolone, it is a quick fix, esp when your throwing up and getting the real severe stomach pains, at least ask about it if your not already taking it, must say raigmore has been pretty good to me and hope you get some relief from the symptoms soon

 

[Kers]

heya folks, ive been back and fore to raigmore over the last 10 years, seeing dr potts and david armour,, if your really in a bad way get to the a&e,as this will bring you to your dr's attention, plus its best to bee seen anyway just in case,, theres always your so called evil friend, prednisolone, it is a quick fix, esp when your throwing up and getting the real severe stomach pains, at least ask about it if your not already taking it, must say raigmore has been pretty good to me and hope you get some relief from the symptoms soon

Hi thanks for that.

Feeling a bit better today. Just resting and see what the bloods are like on Monday. Not been sick today which is good.

Dr Potts is great but I think the delay now is the fact he doesn't know what to do with me. I can't take prednisolone any more as I'm having severe reactions to it and it's too risky. So I'm totally therapy resistant. Hopefully Monday will bring some news and a little push in the right direction to getting treatment of some kind.

I will definitely be hitting A & E if it gets much worse. It just gets you down when you can't really function and back and forth to the loo. You all know what that's like lol. Just frustrating to be waiting since Summer 2009 for these answers and really at the end of the day it comes down to how much money they can spend which at the moment is not huge amounts.

Fingers crossed I get some kind of answer on Monday. Thanks for the support

 

[Kazters]

David is a proper star! really dont know what id do with out him i see him more than Dr Dela Heras who is my consultant, im on Humera at the moment started about a month ago but no change so far ;( not expecting it to be honest this early more steroids to come as well apparently.

i was meant to be dr potts but well he went on holiday the day i was admited and got swapped ;( raigmores problem seems to be one david and 3 drs and far to many patients

i hope you start feeling better soon or that he can do something ;( there must be something he can try he cant leave you like this.

 

[Echoes]

Hi Kers, I hope you are now felling a little better and they have been able to relieve your symptoms.

I have been attending Raigmore for over 20 years and would say for the majority of the time the treatment I have received has been 1st class. I do get the impression though that at times they struggle to cope with the sheer volume of patients coming through the door.

Having an IBD nurse has made a big difference and I would agree he is a top bloke, but yes he can only do so much.

I would be interested what your thoughts are on the ASTIC trial as this has also been suggested as a possible treatment for me.

Best wishes:hang:

 

[Neilfisk]

Hey all,

At last I find a thread where they are talking about my local hospital, well so called hospital!!!
I have had crohns for about 10 years now, got diagnosed then went on Pred for about 2 years(under Zentler-Munro) he then told me nothing wrong with me!! Went to GP and got referred to ARI. In there 2 weeks and had an emergancy RH Hemicolectomy. That was bout 5 years ago, since had a resection last June where Raigmore told me theres nothing wroing with me. That was Potts!! Do not like that person nad he dont like me. Anyway I have been turned away from there so many time due to flare ups!! Its mad.
How does everyone else feel about the treatment they get. David is great!!

interested to find out

 

[peaceandsmile]

Kers, I am sorry you are having such trouble with your doctors and your symptoms, I really do hope things will get better for you. ;/

Neilfisk, I am sorry you are have such problems too! I personally have wondrous doctors, my surgeon is a sweetheart and my GI is an angel, so I cannot complain, they really try to do all they can for me.

best of wishes to you, kisses, Aya

:hang:

 

[Neilfisk]

Peaceandsmile,

I wish I had the kind of doctors who WANT to look after you, not the ones who fob!!
I have been having a bad flare for the last 3 weeks and my GP has told me not to go into Raigmore as they wont touch me, what does that say????

 

[peaceandsmile]

Wow, that is unbelievable!I cannot believe they do not want to help you, isn't that their job?:O I am so sorry, is there any other doctor around who can assist you?Best of luck to you!

kisses, Aya

 

[Neilfisk]

You can see my frustration.... Bloody annoying because I am having a bad flare up at the minutes. The other hospital where I had my operations is 200 miles away!!! Nitemare

 

[Kazters]

i find the main problem with raigmore is there are what 4 GI doctors and they all fob all the work onto david and he is only one person - he has to force the doctors to do other tests. im there weekley at the moment for medication and i have to get a capsuel endescopy and things but really they need to have better communication.

sometimes wheni go to my GP and im flairing he phones the hospital and they want to admit me straight away (if it isnt my own consultant he gets) if its mine she just says she will see me in clinic (she dosnt i see david)

they need to get there act together there are so many people up here suffering with this disease

 

[Nettypet]

waiting again!

It is so nice (or not so) so see people having similar problems to me at Raigmore Hospital!

I was diagnosed with Crohn's in Sep 10 but really should have been diagnosed 10 years earlier if the old consultant (Zentler Munro) had listened to me!

I have been very very ill for the last year, it has taken a fistula (crohn's eating through all the layers of my bowel and leaving an un-natrual track between my back and front passage) I am practically housebound now, fitgue, exhaustion, dizzyness, weakness

New consultant diagnosed it.

I was at Raigmore and had a Sigmo today was to start antibody injections but my tempreture was up so my system is fighting something. David took blood tests and an MRI scan was mentioned, David made a few phone calls but said just to go home until I hear from them

I just want my life back again!

 

[Kazters]

OMG netty i had him to his awner was bloody fiber and fybergel! i met him last year he did an emergancy scop and actualy said to me oh crohns that makes sense!

im back tomorow (was htere today as well for injections and bloods) ive been bleeding when i go so have to get an ermergancy scope of bowel but not a colonocpy all depends on consultant

he mentiones MRI to me all the time and never happens LOL!

i want mine back to ;( ive been two years like this and ive just had enough!

 

[Nettypet]

Yeah Kazters, I know how you feel, when I told Zenltler I had thought I had an abcess (I knew I did) and an extra hole somewhere I shouldn't! He told me it was 'perfectly natural to have a hole there!' made me feel really stupid and doubt myself! The abcess he said was a pile and he banded a pile! I just kept quiet after that - I was begining to doubt myself so much that when a friend told me her cat has a sore smelly bum and a glad was blocked, I even thought - maybe humans have these glands too LOL!

This time last year I was put on a very high dose of oral steroids and after the first couple of weeks I felt awful (flared up the abcess) then I was given an infusion of infliximab which made me worse, I have just now found out that, that lowers your immune system, I was then started on meticapapurine which lowered my immune system further, I felt really awful - on the loo and projectile vomiting into the sink beside me in the bathroom and hardly able to get off the couch - I even got a neighbour to check my blood sugar felt so bad! Anyway came off that and have felt slightly better.

I have an OT she referred me to a dietician (my late mother had coliacs so even thought of that) and I have been on Liquid replacement meals for the last 4 weeks, that has made a difference, at least I am not throwing up anymore and not stuck to the loo as much and have a little more energy which differs from day to day! I am going to be intoduced back to food in 2 weeks time but I really think I will keep some drinks aside for emergencies, when I can't eat!

Getting about is a nightmare, I just can't as I have to get taxis everywhere, my social life is now ziltch too - even if I do manage to get out, I need a seat and I only last a couple of hours - last time was between xmas and new year
I have an appointment with the skin specialist on Thurs (rashes go with crohn's too) but now after my taxis on Monday, a public holiday, I can't afford anymore taxis, I am aiming for the bus but as I can only stand for 2 - 5 mins before I need to sit not sure if I will make it.

I have just applied for DLA for the 3rd time, fingers crossed this time. I had a really good job which I was in for 8 years but my attendance record was awful, and I think my employers doubted me! All that time off for sickness and diorea! and due to an incident at work where I was threated by a customer I was off work for a year and then transfered to Alness doing the same job but behind a phone but just before I started my dad died. I was ok for a few months but felt I was holding on by my fingernails, just leaving Inverness and having to stop at tesco's for the loo, then getting to work and rushing to the loo and retching.. my job ended

Then my mum died - I cleared her housing association house and then my car was re-possessed! Can things get any worse? Still got my flat for the mo, just getting the interest paid on my morgage so arrears are going up each month, looking to sell to a housing association and rent back but I need my place deep cleaned before I let a surveyor in the door - really need DLA.

An MRI, this is the second time it has been mentioned but didn't happen last time - I got an untrasound scan instead - which showed that I also have an overian cyst, what next!

Sorry Kazters for the long message but I am just frustrated and going round in circles

Annette x

 

[Kers]

Update

I have not had the time due to problems with my son who is autistic and then general Crohn's problems. Really annoyed. Got results from all my tests and I have widespread ulceration throughout my small bowel. My consultant confirmed this on 25th March 2011 and said he would refer me to ASTIC (Stem Cell Transplant Trial) as a matter of urgency. I am still waiting. The last couple of weeks have seen me go downhill again and in a lot of pain so phoned up and he cannot refer me as NHS Highland will not fund it! Yet they will fund other treatments for people who have abused their bodies for many years. I am not as important! This sucks in my opinion. 12 years I have gone through 2 surgeries and all the drugs imaginable. I have no other option! So I emailed the trial direct to find out exact costs and then writing a rather interesting letter to NHS Highland and my local MSP and MP. Or some serious fundraising I suppose

 

[Nettypet]

thats awful!

Kers! I can't believe that, who is your consultant? Have you had infliximab transfusions or adlimamab injections to dampen you immune system? I have just started adlimamab. What about the IBD nurse, his is very good and can chase things up! I feel so sorry for you. I am at Raigmore every day just now for my skin. Also waiting for an eye appointment as it has affected both my retina's

Take care A x

 

[Kers]

Hi Annette,

I have been seeing Dr Potts for over 12 years. I have tried Imuran, Methotrexate, Infliximab, Adulimumab and finally Thalidomide. All without success. Banned from Steroids now as they cause other major problems. Can't have more surgery so this would be my last hope at the moment. Gathering all my info together now though to write to NHS Highland direct, MSP and MP now.

Kers.x