Ppffffttttttt

ppffffttttttt

Not sure where to put this as it could go in a few categories.
Thought I would put it here and if them that knows better can move it if need be.

So anyway. Been on the Prednisolone since Friday. After a very shaky start am now on 30mg dose with a 5mg taper each week.
So no been feeling great, unable to stay awake for more than a few hours at a time. Feeling sick, dizzy, really shaky and unsteady, like i am coming down with an infection but have no temp and all my observations are ok.
Today had horrendous pain, sharp/stabbing, in my rrectum and hhad to rush to the loo. Quite a bbit of blood came out. After 18 months of rectal bleeding I am quite good at guessing how much blood I loose. Over the afternoon I estimate i have lost 1/2 a small cup full of blood.
Phone up emergency docs and go up and see someone. By now I am physically being sick, almost passing out in the office and so shaky I can't stand on my own.
He phones the colorectal surgical registrar to get advice on how best to treat/help me. The registrar didn't want to know. Told him to send me home and tell me to deal with it till August, when I can have my stump removed surgically.
The doc was not happy about it but his hands had been tied. He did an inr and a fbc on me. My inr had gone from 2.7-3.2 but nothing too bad. Fbc was normal, as i expected.


Just totally fed up and dejected and sseemingly unable to get any medical care. The doctor who very kindly dealt with me advised I go straight to a&e next time and 'ham it up'

I am up my gp's Wednesday for blood work up and will make a noise when there if need be.
Nothing I do seems to make a blind bit of difference. I am still in pain, bleeding and miserable.

You sometimes have to push hard - same issue here in Canada. I have posted what I did as a response to the same issue, so I won't repost it here. PM me if you would like details....

Am going back to a&e tomorrow.
Still bleeding. Its not gushing, so that's ok, but i am not happy about it.
Bright red blood and dak blood mixed in. Abdo pain is going up notch by notch as well.
Totally fed up.

Wow, Shazz....this is not good. You might practice with your kids on how much to ham it up. Get them to rate you like they do in the Olympics.

Hey, here's what I did to get the doctors to pay attention. (WARNING: Not for the squemish)... I'd been bleeding... a lot. I'd built a contraption that I had used in the past to collect stool (and separate it from everything else) because one of the tests called for me to do just that... collect all my stool, and send it to them in a bucket. Anyway, using that device, I estimated I was losing about 1 litre of blood every 2 - 3 days. The doctors said there was no way I could be losing that much... the scope they'd done just 2 months before didn't support that estimate. They absolutely refused to take another look or credit my estimates... what did I know, right? So, I dug out my digital camera and took photos... lots of photos... of how much blood red fluid was coming out of me. That persuaded them to go in for another look... and that look resulted in an emergency resection AND an apology from the chief big shot. He said he'd never seen disease spread so fast, and didn't think it was possible until my case... and my pics and scope.

Couple of things I figured out early in this disease.. a) if I was going to beat it, I had to fight it .. b) sometimes to fight it, you have to be prepared to do battle with the whole system. In my case, I knew that the 'experts' had it wrong.. and I had to find someway to get them to listen. The digital camera scenario may seem over the top, but, I figured they were already writing me off as a whack job, some nit wit who didn't want to listen to them (regardless of whether they were right or wrong), so what did I have to lose? It was drastic, but I literally shudder to think of how bad it might have been if I'd behaved like a good little patient and just went home and quietly bled to death. That's the really sad part. I wonder how many people are out there who are in worse state because they listened to the doctors despite what their bodies were telling them. Who knows???

Thanks toothy!
I might just cry!
There's a fab advert/commercial for cold remidy here where you see mum and toddler in the supermarket. Kid picks up sweets or crisps and mum shakes her head no. The kid puts his arm up to throw a hissy fit and mum comes up, snatches the packet from him and throws herself on the floor and has said hissy fit. Picked herself up and just looks at the kid as if to say there I did it first, deal with it!
That will be me.
I can ham it up but my obs never support it. Mind you, when i went in with my pe my obs were ok!
Go figure.
Why do docs insist on doing my obs anyway. They are always fine, never high Bp or temp, pulse always ok, sats were low when I had my pe but to be expected!
I even told the doc to within 10 points what my Bp would be. Its always the same.
Rant over.
Xxxxxxxxxxxxx

I really hope they do something for you soon! maybe the pred needs a couple more days to start helping?

Thinking of you, Shazz.

I am going to a&e tomorrow morning with a letter and a patient profile printed off by my gp.
He tried to get through to the surgical assessment unit but nobody was answering the phone.
The pain has gone up again and gets even worse when i eat or drink anything.
Will let you know how things go.
Xxxxxxxxxxxxx

So sorry to hear this, Shazz. Hopefully all of this will finally get you the attention that you need!!!!! *HUGS*

yeah, let us know, shazz. big big BIG hugs from me and Sadie bear.

Thanks guys.
Have just got them a lovely sample! Don't want to turn up empty handed!
I feel really rough now. Don't know what is hurting more anymore.
Might take an amitriptyline in a bit and see if I can get an hour or 2 sleep.
Xxxxxxxxxx

Hi Shazz
I cannot believe what is happening to you.
What on earth are these docs doing to you?
Could you not be referred to the GI system in Exeter? better still St Marks Hospital in London?
Sounds as if your docs need to re qualify.
Hope you soon get properly diagnosed and taken care of---nobody should suffer like this.
Feel better soon
Hugs and best wishes
Trysha

I can remember being in agony in a+e but no one was taking me seriously , the on call doc said look your gi will see you in a few weeks there's nothing we can do for you here it's just ibs. ( I didn't have a diagnosis then ).

I flatly refused to go home because I couldn't eat an was in slot of pain and getting scared , so they got me a bed on a ward with the oldies , hopeing I'd just go lol.
I cried coz I hated it there and pain meds were an issue every time I asked , one nurse said it's you period get over it !! ( I wasn't even on !)
My gi hated me an always told me it was ibs or in my head or youve ate too many crisps !
Idiot I couldn't eat !!
He eventually sent me for a ct scan and his face when he had to come and give me the results made my day !!! Lol I was finally taken seriously with a 99% diagnosis of crohns.
Then I had the fecal calprotectin test and it was 471 !
Straight away treated with pred , and lovely tramadol lol
I stayed there 3 weeks in total .
It just goes to show of u think something is wrong it most likely is so refuse to go home put on the tears say how scared you are anything for them to take you seriously or treat you .
Jen xx

I should take my own advice and get myself some proper treatment soon lol

Thanks jen.
I am now in surgical assessment unit. Had various blood test and chest and abdo xray. No results yet but not been here that long!
have seen a doc and they said I will be here for a few days at least.

I never thought I would be happy to be in here but I am glad I am here. In soooo much pain and keep urging but not actually been sick. Nothing going in so nothing coming out!!
have told them about every pain and ache I have had since my op so they know all thats going on.

will let you know how things are going with results and stuff as I know.
bear with me as ii am on my phone and cant see straight!

xxxxxxxxx

Thank goodness!! Hooray!!!!

I'm glad you are there too. I wish you well Shazz and do let us know how you are getting on!

Its about time they got working.
Hope you will soon be diagnosed , treated and up and running.
Feel better soon Shazz!
Hugs and best wishes
Trysha

Quick update:

saw a colorectal doc and he has prescribed me some different suppositoories to try. Am staying put though! He did try to send me home but I said no.
also saw another doc and when I mentioned the whole family history of bowel/stomach cancer and all the blood relatives who have either UC or Crohns he asked if I had been tested for Crohns. I. Gave him the quick history and he didnt look impressed.
so fingers crossed I might get an answer sometime in the future aboout Crohns.
still cant eat or drink and having more problems swwallowing still.

moree tomorrow my lovely peeps
xxxxxxxx

Past due time they look a bit more! What about the biopsies from when your colon was removed? Normally that would be looked at after the surgery. I'd like to know what the results were. If they didnt biopsy and look at it, I'd like to know why if I were you.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

A suppository may not do much if your bleeding is higher up. I was bleeding from my ileum bright red blood and I know you can get bright red blood from higher than that (I know David knows from where exactly). Glad you didn't go home when that doc suggested it. What's with those doctors in your area? Mine had no clue what to do with me when I was first in the hospital but they at least contacted specialists from around the country to get an idea of what tests to run and where to send me after. I thought the US had the worst health care. Hope you get some real help soon!

Crabby, Shazzy has an ileo and a stoma. Her rectal stump is bleeding now. And it doesnt want to stop (suspected crohns, not UC as she has been diagnosed with previously)

I see I may have confused her with someone else. So many people! Well the rest of the information still stands.

Easily done gorgeous!!! :heart:

I'm glad you're finally being cared for properly Shazz.
And good on you for refusing to be sent home yet again without having had a proper assessment and remedies for your situation.

Crabby said:

A suppository may not do much if your bleeding is higher up. I was bleeding from my ileum bright red blood and I know you can get bright red blood from higher than that (I know David knows from where exactly).

Click to expand...

The ligament of Treitz is the general cutoff which is basically between the duodenum and the jejunum.

Thanks everyone.

have had to wait 5 hours for pain relief but it has finally got here.

they were not told about the possible Crohns complication when they did my op so did not biopsy for it. All down to the stupid consultant who kept telling me it was all in my head.
I am now looking at it as a new set of eyes looking after me.
trying to be positive.

will update you all more tomorrow. The staff are on the hunt for some of the meds that have been prescribed cause threy are not kept on this general ward I am on.
good job I brought some of my own meds in with me.
xxxxxxx

Ok. Meds update.
flagyl 500mg suppositories
metronidazole 500mg suppositories.
paracetamol
codeine
oramorph
plus all my other ones as well
good job they brought them all early cause it takes me a good 10 minutes to get a tiny codeine down!

Hi Shazz,

Flagyl and Metronidazole are the same thing. I just wanted to make sure you accidentally listed it twice and aren't taking the same thing twice.

Thanks David.
I have 2 to take and didnt realise they were the same thing until just now.

xxxxx

Shazz, way to go on standing your ground and not letting them send you home! Sending you healing vibes and hoping you get the care you need!

YaY!! Are they considering bumping up your surgery date at all?

I wish toothy!
Not a chance in hell!
I am still in between that old rock and the hard place but at least I have a nice comfy bed and room service!!

shazz said:

Thanks David.
I have 2 to take and didnt realise they were the same thing until just now.

Click to expand...

They do have 1g flagyl/metronidazole suppositories so I don't think you're overdosing, but I'd ask your doctor to be safe and make sure there wasn't a mixup of some sort.

Dang, Shazz.... well, I'm so glad you are finding a bit of relief at the moment. And yes, room service helps!!

Well, it was going quite well.
until not seen a doctor today, had no inr done. No warfarin yesterday or today. Its now 8.30pm and they have only just done my inr bloods to send them to the lab.
Have not eaten since being brought in here and no-one seems to mind much.
to be honest its not really worth me be even being here cause I receive no care.
I am going to ask them to phone the IBD nurse tomorrow and see if she can get me some sodding answers.
its making me really mad and I dont like being angry and upset.
That then pisses me off even more.
I am seriously loosing my patience and I cant even remember the last time that happened.
I just dont have the energy to deal with it right now.
ok, thats better.

Are you nil by mouth? What does the sign say above your head? No warfarin may not be a bad idea, if they are looking to do surgery on you. But what does the ward nurse have to say about no food, etc? You arent just laying there letting them do that are you?

I remember being in hospital, and damn glad I was mobile. Good thing because I had to be to help myself and others that werent. Glad I had a mouth too. But that was at xmas time, and they were very short staffed. Now they shouldnt be! (oh...thats right there were strikes going on today...hmmmm???)

Not nil by mouth but just cant swallow anything.
They are not plannng any op on me till august due to pe.
Ward nurse is trying to get a doc to come look at me about the swallowing. The nurse didnt know about the not swallowing cause the doc didnt pass it on and I am not on a food/fluid chart either.
colorectal docs have written in my notes that I can leave when my pain is under control. Followup appointment in outpatients to be arranged later.
thats why they have not been to see me cause they, as far as they are concerned, have discharged me.
its like a 3 ring circus here.
never a dull moment.

I was given both flagyl and metro as well.. one in the fluids bag, one IV..

Hope you're doing ok up there Shazz! Thinking of you xoxoxo

Not good. Pain really bad. No nurses for pain relief.

:-( That is RIDICULOUS! xoxo

Finally got some pain relief. All the drug charts are still down at the pharmacy. I had been having oramorph since beeing in here so demanded that.
Waiting to see another doctor. Wont hold my breath.

:ghug::ghug:Shazz real sorry to hear you are having such a bad time, sometimes this is sooo frustrating I get fed up fighting back . Sometimes I think Doctors forget that Crohns/IBD doesnt go home for the weekend.
Hope tomorrow is a better day.
Peter

I just posted a massive reply and lost it all lol !!!

What I said was when I was in hospital I went 5 days without food before anyone took me seriously , I ended up not able to eat the whole time I was in there 3 weeks !
But I did get to see a dietician who gave me ensure plus and build up soups .
U need to get across how hungry you are but how u physically cannot eat ! They might think your just not hungry etc so u need to tell them ASAP !
Tell your doc , a nurse anyone who you like .
Or get your husband / boyfriend , mum , sister to do it for you .

From my experience my doc just didn't listen and didn't care but the nurses did and if it wasn't for them telling him what was going on he wouldn't have known .
So get someone to realise you CANNOT EAT not you don't want to .
Hope you get better soon
Jen xx