Sooo angry and once again confused.com! contradiction! grrrr!!!

[stacenrach]

sooo angry and once again confused.com! contradiction! grrrr!!!

:ymad:
sorry for this rant but im sooooooooooooo angry!! i have just got from seeing my consultant,i have been weighed and have maintained my stone on,which is a good point.however he has called me in today which should have been to get my results from pill camera. when i got there he asked me if anything had changed which it hasnt other than chronic lower back pain seeping from my stomach..said take more codine and less paracetmol! also ask when i had my hydrogen breathe test which was nvember 8th this year,said he hadnt had the results back and rang fr them to be faxed to him!!! bit confused as he told me last time i went that i had passed it???? and said that my consultant was on holiday so he didnt have the pill camera results!!! gggrrrr!!! why call me in then? and why do they constantley contradict thereslves!!! does anyone else find this....

he examined my very destented stomach and said ohh its not as distented as last time i said yeah because ive only had half a slice of toast..(looking like ive been to a all u can eat buffet) probably lookin 6-7 months pregnant. he said that ive gotta now go back 9th january where all the test results would be back and hes also gna get another consultant whos working with him to see me...i know it looks like im being negative...but i was really down thinking there not gna be the results i want...but now i have to face im not getting any results untill well after christmas....as negative as i am and think about my illness...just wanted them to say yes this is the problem..come off these meds,go on to this and you can go back to work!!! guess im wishful thinking...

now i have to face all the text and phone calls on people awaiting my results= constantley talking about it... gets me really down but i understand some of the people i love it effects them as much as me..seeing me like this. sorry for ranting on im just sooo fed up feeling like im being fobbed off all the time. gutted gutted gutted! :frown:

 

[StarGirrrrl]

Stace, I am so sorry, we all know exactly how you are feeling. If you are not satisfied with any aspect of your care then I would urge you to contact your Hospitals PALS service and make a complaint. You are not being negative at all!

I found it hard when I knew family/friends were waiting on news, so now I don't tell them when I am going, so I don't have to deal with the pressure, and I can absorb the news as long as I want before I tell anyone. I either don't tell when I am going or am very vague when asked. Be honest you know, that you understand they want to know everything asap, but the pressure of that on top of your illness is just too much for you, and you will let them know stuff as soon as you can (after all they aren't to know a day or two has passed by).

I tidied your post a little, just to make it easier to read. I hope I got the smilies right

 

[stacenrach]

hey stargirl,awww thanks for tidying it up LOL!im all new to this its the first chat forum apart from facebook ive been on!ive stopped myself from writting on here as i dont really know what im doing!just write and click anywhere sorry!x thats a really good piece of advice about not letting people know. i find it hard not talking about it and it always on the tip of everyone tongue when they see me,its my life my illness at the mo,however im gna take ur advice!thanks hun.really nice of u.youll get fed up of having to tidy up after me! just hoping they sort me before my wedding...its getting real close!really want to eat the 3 course meal!and not be sat drinking milkshakes !!! roll on 9th jan!!!thanks again star girl.x

 

[StarGirrrrl]

Well after my own experiences with them I don't think I would be surprised. Sadly I hoped my PALS service were the exception rather than the rule!

There are ways of taking things further if you get no joy from them, you could contact your local MP or there is a Health Ombudsman http://www.ombudsman.org.uk/

It all takes precious energy I know :soledance:

 

[Angrybird]

Hi Stace, I would be pretty naffed off too. You build yourself up to get some results and and an action plan to get things sorted and instead get told you have to wait!! Why is it thought acceptable by some docs to do this? When was the pill cam test done? If it was a while ago I would agree about contacting PALS to look into why the results are taking so long to come through. Even if the were sent to you consultant only with this central system the NHS are bringing in the doc you saw today should have had access to them??

 

[stacenrach]

thanks stargirl,will deffo keep that link for future reference.think i could write a book whats gone on...thanks again.x

 

[stacenrach]

to be honest angry bird,i only had the pill cam last monday but he actually asked me come in for the results 2day! this is why i was confused with the situation...also i have that many unseen consultants aparently working with my case...he mentioned atleast 7 different doc names to me.said he couldnt get the results.im not suprised every time i go they lose my records and never know whats going on...im just fed up wanted a semi normal christmas.not a drinker but would love a few jack daniels!yum!its been so long!just want to feel like me again...and now the worst part waiting again....and im not even getting hopes up to have the results then!sorry for negativity! thankyu for ur help and advice and most of all concern.love this website.x

 

[Angrybird]

I hate it when you have so many docs looking at your case and the right arm doesn't know what the left is doing. It's horrible at any time to have this waiting but there is something worse about it at xmas tme. I have a colonoscopy tomorrow and I am not leaving the hospital until they give me something that will stop me from throwing up me turkey!! Glad you like the forum, the people here are great and very supportive

 

[stacenrach]

yeah it wasnt until recentley i had a big blow out at them,said was sick to death of having to explain the last few years and how bad the last year has been,without forgetting anything,and to be honest im sick of hearing the story over and over again! i said not even my doctor knows my case,dont feel like anyone does...thats when they started taking me seriously,and started putting in for all these tests.oooooo angry bird a colonoscopy!not very nice they cant do this procedure anymore on me as ive had it dne 3 times in total.twice was not nice but ok but last one!omg!they couldnt get round at all...had to tell them to stop was screaming...they wont put me to sleep either for one.you only get a forget me drug,however it desnt make u forget or make it painless.ave you had one before?hope it all goes well for u. are you on any medication for anti sickness?i take one will have to get back to you what it is..i have noticed a difference...still feel really sick but im not actually sick...im just gna go for it xmas day.whether i eat 3 mouthfulls or a plate full im in the same situation.so gna try and enjoy and deal with the pain when it comes...silly but desperate for some pudding!hehehe! and your right very new here but sooo much support already,cant believe the difference its made to me..thanks everyone.x

 

[Angrybird]

Hi, this will be my 7th colonoscopy in total and the 2nd one this year. The first one showed a stricture and this one is to see if my crohns is flaring (which I think it is) or of I am still experiencing post op settling down. Always awake now but find it facinating to watch the little tv screen, hurts something awful at times though. Not on anything for the sickness so any suggestions would be appreciated.

 

[stacenrach]

7th colonoscopy!u poor woman! bless you.im with you found it intresting watching it on the tv screen,just had a look my anti sickness are called cyclizine 50mg 3x a day.xgood luck for 2moro hun.x

 

[fosterschick]

stacenrach , i notice u are a uk girly , i had same issue with notes not been back ect ... so i rang the radiology ( i asume pill came come under the same ) and asked them nicely to send a copy of all my xrays scan s to my gp to read , that way you can get an idea of wats on them , usually they are sitting on a radiographers desk waiting for the consultant to request them , hope this helps also you can request to see your medical notes within two weeks and this costs nothing or for 50 pound you can have a copy of everything within t month xx i have done the ringing radiology thing then actually given my consultant the copy which my gp kindly gave me for the consultant to look at on the day ... our time is precious xx good luck xx

 

[stacenrach]

test results

hi guys,

hope everyones ok, ive just got back from seeing my consultant to have all my results from pill cam and hyroden breathe test.he didnt have the results for hydrogen test but i already know its come back clear as they told me at the other hospital where i had it done,and they told me there and then!
all the results for my pill cam have come back CLEAR!!!!!!!! really thought this would be the end to it all and id finally get some answers!OV NOT!!!(wishful thinking)
he asked me anything had changed i said yeah ive been getting chronic back ache,where it puts me in bed for two days if i do even something simple like showering...i also said im getting strange feelings in my legs on a night which i wasnt getting before,he now wants me to have a mri on my back?dont know what all thats about??? so a year on and still no answers.... (((( fed up to the max. how do some of you guys goes years and years undiagnosed!!! its been a year and ive more or less had enough...do i just have to get used to the fact ...this is how my lifes gna be from now on?grrrrr....so angry,upset,fed up and just really really tired of it all .x

 

[Angrybird]

Oh hun, that really sucks :hug: I am so sorry you still haven't got any answers. One thing I say for my tummy - it always makes it more than obvious about what is going on. My colonosopy showed very active crohns so I am back on the pred - this was a god send that has gotten me through xmas and new year without throwing up everytime I ate. Being optimistic here but perhaps the MRI will sort this out once and for all.....

 

[stacenrach]

hey angry bird,
thanks for your reply!hug!xxx glad with ur pred u had a gud well non sicky christmas and new year!!!yay!!! makes u feel much better when ur not being violently sick as well as other symptoms!i am completely gutted that yet another test has come back clear!already had mris but not on my back....hmmm i dont even know what hes looking for...he said again the worst thing he could say again today,rome wasnt built in a day.... and maybe after all this we might have to put it down to severve ibs!!! I DONT THINK SO!!!im not having that...i already suffer with ibs i know the symptoms/signs...this is more.do ya know when u just know ur own body!!!my stomach is never a happy chappy!!! so got a mri on my back and had about 6 bottles of blood taken.said he wants to see me again in 3months,also i was gobsmacked to only find ive only put two pound over xmas...ive been literally trying to stuff my face,i need to put weight on!!(got my wedding in 6months and have a dress thats now 4times to big!! ) so been in pain for nothing!!! also told him what thew pyschic said o me ...his reply is she a doctor then..grrrrr!!! so another successful trip to the hospital!not! thanks for being here angry bird...appriecate it.thanks chick. hug!

 

[stacenrach]

hey, hope everyone is ok.
just thought id post an update. i have just come off the phone to my consultants secuatary i was asking about all my blood results which they took 2weeks ago...everytime before when its been clear,shes told me over the phone.she said she couldnt discuss the results with me over the phone,she said she has to type a letter report up from my consultant to my doctor,she said this letter should get to my doc this week sometime and will have all the results and info in it.if it hasnt i should ring my docs for results... im just hoping and praying unlike every other timer of clear blood and test results shes told me...hoping theyve got some answers for me this time. fingers xd!!! will keep u posted!xxx
still awaiting mri on my back.

 

[Angrybird]

Thanks for the update, lets hope these results will finally have the answers you need. How are you feeling at the mo? It is too early to start bugging the doc about the MRI appt?

 

[stacenrach]

hey angry bird,
thanks for your reply.hug!yer im hoping for answers.i rung my doctors yesturday and played blind mans bluff with them,told a lil white lie...see where it would take me?and glad i did..i said my consultant sec has asked me to ring you to see if uve recieved my blood result report from my consultant,they said yes we have!!!! yay!thank god!!! said i need to see a doc to discuss my results...i am in to see my doc 2moro at 9.50 (hes new and totally lovely)ya know the kind of doc that shakes ur hand when u go in and also when u leave and i had the impression i was gna get a lolly pop at the end!lol so just hpoing this is first time ive had to see doc about results!!! every other time been told clear over the phone.
how do i feel angry bird?... feel very emotional and sick to the stomach,i have been struggling to get my lil girl to school in the morning because how weak and ill i feel.so keep having lil emotional breakdowns. i will be ok as i am normally a strong person but sumtimes lose that fight and do what we all do when tryed everything else i go into flight mode. still looking 6-7months pregnant and very tender tummy.everything i eat or drink upsets my tumnmy,even water blows me up. feel like im also getting alot blockages on a regular basis.... just hoping all these are gna ave anwsers why tomorrow!fingers totally crossed...but im really scared that there just gna say clear to me..think i will breakdown before his eyes! dont know about the mri ive been garanuteed within 3months so dont know.just keeping ma fingers crossed chick. how are you doing?thanks for your support.take care.xxx

 

[Angrybird]

:hug: Well done you for getting an appt sorted! I can't see how they can say things are clear when you have a tummy that is 'out here'. I am glad the doc you are seeing tomorrow seems a nice chap, these little things can help. Keeping fingers crossed and let us know how you get on.

 

[stacenrach]

i know angry bird!its ov to look at that my stomach is constantly distended!(have u seen pics i put on my profile?)...more results back all clear!!!AGAIN!( except my vit d level was 22 and said should be 74?didnt do or perscribe anything for that.gotta now go for mri in scunthorpe on 5th feb...expecting nothing to show..not getting my hopes up! how are u angry bird...will keep u posted...xxx hug.

 

[Angrybird]

Oh that is sooo not fair Can they not got ANY thoughts on why your tummy is like it is? I suppose it's something that they are doing an MRI, best not to get too hopeful at this stage, perhaps then you wll get a nice surprise..... When will you be due back roughly to see the doc for the result of this?

I am not too bad, now on 50mg of Aza and just have a few odd grumbles, another blood test tomorrow (yawn).

:hang: xxxx

 

[Catherine]

After one result which supposely clear,only to find out 6 months later it was not. Now try to get copy of everything for our records. these copies can also be used for second opinion

 

[stacenrach]

hey there,
sorry its been a while ive been in my little shell! sigh!....no further on!!! mri on my back came back clear!again!sick of hearing it!rung my consultants sec again...in tears..basically begging for a earlier appointment then april 30th!!!! shes gave me 12 march!alot better.i just really fed up with it all..always swollen always in pain,no matter what i eat or drink..been on sleeping tablets too since september and im taking them at 8pm every night and most nights still awake well after midnight and even some nights 5am!dont even know if its worth taken them anymore?had enough.when i go see him im gna ask him to admit me and observe me for a couple of days and scan me empty tummy then scan me when ive eaten and bloated...surely something must show...getting really stressed with it all as still dont know if im gna be able to eat and drink on my wedding day which is now 4 months away!!! gna ave to stop myself from rrrrrrringing his neck!!!grrrrr!sick to death of it all... how are u guys?...hope all is well.x