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Crohn's Disease Forum » Support Forum » Love that this won't gross you guys out...


04-12-2012, 01:02 AM   #1
Leebie3
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Ffs

FINALLY had success in the toilet.. after LOTS of movicol and pear juice and coloxyl with senna (all given by hosp) so they're sending it away for testing but there was a fair bit of blood in it :-s even I could see that. will that alter the results?

So, the general med team have been and are sending me home.. apparently the gastro consultant reckons that IF I had anything wrong it would have shown in the colonoscopy 6 years ago or the gastroscopy 4 years ago or during the laparoscopy 2 weeks ago.. don't worry that I am nauseous and vomiting, can't eat without extreme pain a half hour /1 hour later, that I can only JUST keep a small amount of liquids down, that I need morphine and endone to control the pain, that I have a bleeding bum, that I have a mouth full of ulcers, that all I want to do is sleep, that I am losing weight, that they have done NO tests other than bloods and now a stool sample to test for c diff which they reckon I won't have because I'd have other symtoms. :-(

WTF do I do now?? I can't go home like this??

Why is the gastro consultant being like this?? the registrar wanted me to have an MRI test where they put barium down tube to look at small bowel but consultant said no. not necessary.. HUH!??

what do I do???? :-(

Last edited by Leebie3; 04-12-2012 at 01:54 AM. Reason: addition/update
04-12-2012, 05:50 AM   #2
Catherine
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I think sarah had the mri test you referring to. It was done privately and cost $380, no medicare rebate or claim on health insurance. Maybe you could get someone to order it privately for you if that as option.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-13-2012, 09:30 PM   #3
Adam1971
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Sorry to hear that your docs still haven't figured out the cause of all the pain and manifestaions of what you have. I certainly hope that somone is helping advocate for you, maybe your hubby, so that they don't just send you home with no dx or treatment plan. What are the docs saying they think is wrong? Why are they relying on a colonoscopy that is 6 years old? Why so few tests? They sound f*#!ed in the head!

Hang n there.

Best wishes.
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04-14-2012, 04:13 AM   #4
Leebie3
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so now I still have D and it's very watery and an orangey red colour.. is that normal? I have no idea what to do.. sick of this pain.
04-14-2012, 04:17 AM   #5
Catherine
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Do you have a private gi?
04-14-2012, 04:24 AM   #6
Leebie3
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no :-(
04-14-2012, 04:47 AM   #7
Catherine
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maybe time you found one and had your doctor to refer you. After a trip to hospital on christmas eve, lefted with a letter asking our gp to refer sarah to a gi. I rang and got the first appointment available then got the appointment up due severe weight loss. She dx within a month.

It has cost us a lot to get sarah dx and treated but it has been money well spent.
04-14-2012, 05:56 AM   #8
Leebie3
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dial a doc been.. SHOCKED that they sent me home with IV. And disgusted that no tests have been done.. not even a scan. took it out and is sending me in to hosp because I am severely dehydrated or in her words "dry as a chip' lol

Her referral letter says

provisional diagnosis - colitis? gallstones? nausea/vomiting
treatment - needs IV fluid rehydration
clinical notes - 36 yo (she didn't believe I was 21 lol), cramping abdominal pain. not able to tolerate any oral intake 5/7. severe cramping abdominal pain, RUQ & periumbilicus + pr bleeding & mucousy stool
o/e febrile 37.7 not *something that I can't read* generally well.
plan hospital. BS ++

so.. long story short. I am to go into the hospital again and request the patient liason officer as well.
04-14-2012, 06:01 AM   #9
Leebie3
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oh for sure.. it's def well worth it.. but we have debt coming out our ears and have already spent $80 just on the faecal calprotectin test. They've said if that is positive then it's pretty sure that I have an IBD. so praying (in a weird kind of way) that it comes back positive.. I'll have their guts for garters if it is!
04-14-2012, 07:42 AM   #10
Catherine
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Sarah that test it only cost us $40.

I do understand the cost issue. We have passed the medicare safet net and its april.
04-15-2012, 07:19 PM   #11
Adam1971
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Each day I check this thread to see how you are doing. I hope that you're feeling better and that your getting more robust effort to diagnose what's going.
04-15-2012, 07:27 PM   #12
Leebie3
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thanks for caring Adam

so just saw GP and despite faecal calprotectin being 'normal' he still wants me to urgently see the GI and have scopes. He thinks I still have an IBD.
I don't know what to do.. he wants me to go private so that it's done this week (having black D and severe pain, he says I look unwell and very pale) but it'll cost about $1000 after rebates from medicare and I don't know if I can afford that especially when the calprotectin has come back neg.. isn't that test pretty sure?

don't know what to do think or feel.. so over it all. would be so much easier to just not be here.
04-15-2012, 07:34 PM   #13
Adam1971
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Are still in the hospital, or back home?
04-15-2012, 07:46 PM   #14
Leebie3
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home.
04-15-2012, 10:02 PM   #15
Mountaingem
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Black D and pain still? Honey, go to ER-see if you can work out the financial aspects later. You need some answers and to get treatment, these are serious symptoms, don't want to scare you but you really need to go back to the hospital.

Keep us posted!
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04-15-2012, 10:17 PM   #16
Leebie3
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I've been at the hospital.. they admitted me twice for a week each time and still sent me home with no tests.. told me to make an appt with GI :-(
04-15-2012, 10:24 PM   #17
Catherine
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Ring the GI and see how much consultation will be. Our first appointment was $150 and got approx $60 back. Do you have private health insurance? Any health card from the goverment? Any goverment benefits at all?

I am calling Dusty into the thread. Hopefully she will have some suggests.

Are you only 21? If so Dusty has children around your age with IBD.
04-15-2012, 11:12 PM   #18
Leebie3
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me? nah, I'm 36 lol

I have healthcare card, no insurance.. rang up about some but they won't cover preexisting conditions.

have a GI appt on wed. will cost $185 - $285 depending how long he spends with me.. get $125.90 back from medicare.

private colonoscopy & gastroscopy is $987.20 get approx $300 - $400 back from medicare and the anaethetist is approx $400 and get about $200 back from medicare
04-16-2012, 02:21 AM   #19
Catherine
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I know difficult it just change of health insurance as we had a $400 excess, will have wait 12 months to claim without the excess for me or Sarah.

Did ask whether he would bulk bill due the the healthcard? Our GI does bulk bill healthcard care holders.

Must have you confused with someone else. I know you ask about taking pred on a another thread, wouldn't before you GI appointment because is you go head with colonscropy & gastroscopy pred may make it harder to get a dx.
04-16-2012, 02:26 AM   #20
Leebie3
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probably was me lol.. It was suggested that I trial it but at that point I was expecting to wait 9 or so months for appt.

I'm stopping the sulfasalazine too..
04-16-2012, 02:26 AM   #21
Leebie3
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are you serious! they're making you wait a year when you already had insurance with them. money hungry!
04-16-2012, 02:37 AM   #22
DustyKat
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Hey Leebie,

Do you have anyone that can advocate for you or just basically be there when you go to hospital or for appointments? Partner, Mum/Dad, another family member or close friend? Having some one else with you can change the attitude of doctors and nurses and you can often make things happen that otherwise wouldn't.

I assume you aren't in Brisbane??? If you are or you can get there I would present to Casualty at a large teaching/university hospital with a colorectal unit. That way you will get all the necessary testing under the public health system plus the top GI's and surgeons.

Scoping is only ever going to show a portion of your bowel. That being the large bowel and the the end of the small bowel with colonoscopy and the start of the small bowel with a gastroscope. That leaves a lot of uncharted territory inbetween. CT/MRI enterography is very accurate at visualising the small bowel and they should be able to do that in a large hospital as it is only the contrast that differentiates it from a standard CT/MRI.

Dusty. xxx
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04-16-2012, 02:51 AM   #23
Leebie3
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thanks Dusty :-)

nah, I'm in Cairns. My partner will come with me :-) He's been so lovely.. even called me during the day today just to check I was ok because i was looking after the bubba today alone.
04-16-2012, 04:42 AM   #24
Catherine
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Not so bad with upgrade, we have cover for pre existing conditions, just have to paid the current excess of 400.
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