Share Facebook


 
05-07-2012, 03:03 PM   #1
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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.
__________________
DX: September 2011 UC now possible Crohns Feb 2012
Have tried: Pentasa(all forms),Prednisolone,Aza, 6MP, Infliximab,colifoam,metronizadole
Allergic/sensitive to: Penicillin, medical adhesives, tramadol
Am on: Citalopram,warfarin, paracetamol
Ozzie was born on 2/2/12
23/2/12 p.e in both lungs.
Now the gallbladder decides to say hello!!
05-07-2012, 03:18 PM   #2
shamrock15
Forum Monitor
 
Join Date: Apr 2011
Location: ottawa, Ontario

My Support Groups:
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....
05-07-2012, 03:41 PM   #3
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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.
05-07-2012, 03:47 PM   #4
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
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.
__________________
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
05-07-2012, 04:03 PM   #5
Kev
Senior Member
 
Join Date: Jun 2006
Location: Halifax, NS, Canada

My Support Groups:
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???
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
05-07-2012, 04:04 PM   #6
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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
05-08-2012, 08:20 AM   #7
Manzyb
Forum Monitor
 
Manzyb's Avatar
 
Join Date: Nov 2009
Location: San Diego, California

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

Thinking of you, Shazz.
__________________
Diagnosed with CD in 1999 at 15.
http://www.facebook.com/profile.php?...14&ref=tn_tnmn


Sadie turns 2, 4/5/13!
05-08-2012, 01:33 PM   #8
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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
05-08-2012, 01:40 PM   #9
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
So sorry to hear this, Shazz. Hopefully all of this will finally get you the attention that you need!!!!! *HUGS*
05-08-2012, 01:41 PM   #10
Manzyb
Forum Monitor
 
Manzyb's Avatar
 
Join Date: Nov 2009
Location: San Diego, California

My Support Groups:
yeah, let us know, shazz. big big BIG hugs from me and Sadie bear.
05-08-2012, 02:20 PM   #11
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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
05-08-2012, 06:46 PM   #12
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
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
05-09-2012, 03:40 AM   #13
Jenny06xx
Senior Member
 
Join Date: Oct 2010
Location: Cwmbran , gwent, United Kingdom
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
__________________
diagnosed with crohn's disease September 2010 symptoms since 2003
Acute pancreatitis 2003
gallbladder removed laprascopic 2003

Meds

Budesonide finished again !!
Pentasa 2g 2x a day
Pred 40mg
Ensure plus ( no longer needed)
Dihydrocodeine 120mg slow release 3 a day
Dihydrocodeine 30mg 2.. 4x day
Tramadol 50 mg 2 ...4x a day ( stopped coz it's not helping )

Waiting for fist appointment at pain clinc I hope it helps !
05-09-2012, 08:53 AM   #14
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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
05-09-2012, 08:58 AM   #15
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Thank goodness!! Hooray!!!!
05-09-2012, 12:30 PM   #16
Manzyb
Forum Monitor
 
Manzyb's Avatar
 
Join Date: Nov 2009
Location: San Diego, California

My Support Groups:
I'm glad you are there too. I wish you well Shazz and do let us know how you are getting on!
05-09-2012, 12:50 PM   #17
Trysha
Senior Member
 
Trysha's Avatar
 
Join Date: Aug 2009

My Support Groups:
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
05-09-2012, 02:01 PM   #18
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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
05-09-2012, 02:07 PM   #19
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
05-09-2012, 02:14 PM   #20
Jennifer
Adminstrator
 
Jennifer's Avatar
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!
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-09-2012, 02:18 PM   #21
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
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)
05-09-2012, 02:24 PM   #22
Jennifer
Adminstrator
 
Jennifer's Avatar
I see I may have confused her with someone else. So many people! Well the rest of the information still stands. :P
05-09-2012, 02:39 PM   #23
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Easily done gorgeous!!!
05-09-2012, 03:49 PM   #24
Samboi
Senior Member
 
Samboi's Avatar
 
Join Date: Jan 2012
Location: Australia

My Support Groups:
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.
__________________
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Trying Vedoluzimab - running out of options
Neupogen
05-09-2012, 03:51 PM   #25
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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).
The ligament of Treitz is the general cutoff which is basically between the duodenum and the jejunum.
05-09-2012, 05:14 PM   #26
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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
05-09-2012, 11:23 PM   #27
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
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!
05-09-2012, 11:47 PM   #28
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
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.
05-10-2012, 12:42 AM   #29
shazz
Senior Member
 
shazz's Avatar
 
Join Date: Nov 2011
Location: Plymouth, United Kingdom
Thanks David.
I have 2 to take and didnt realise they were the same thing until just now.

xxxxx
05-10-2012, 04:14 AM   #30
carolhew
Senior Member
 
carolhew's Avatar
 
Join Date: Jun 2011
Location: Phoenix, Arizona

My Support Groups:
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!
__________________
Currently on: Remicade 10mg/kg every 8 weeks and azathioprine 150 mg daily
Previously on: Entocort (budesonide), prednisone, Pentasa and Humira
Diagnosed: June of 2011 with Crohn's in the terminal ileum.
January 2012: stricture found in terminal ileum, balloon dilation
Remission as of January 2014!
Reply

Thread Tools


All times are GMT -5. The time now is 09:41 AM.
Copyright 2006-2017 Crohnsforum.com