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09-08-2011, 04:49 PM   #1
crag
 
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Second breath test negative.

So I had my second breath test last week after my initial test was off the scale, which I've found out may have been as a result of the fact I was sick on the morning of the test!

I spent the latter half of the week trying to speed up my case which involved numerous phone calls and waiting. The plan now is to try and get a referral to a hospital which does the pill cam procedure and pray that it highlights the cause of all this. I'm told that if it's unsuccessful the remaining option would be keyhole exploratory surgery, which is certainly not something to look forward to. However, I'd happily consider performing the operation myself if I thought for one second it would bring me some relief and normality. (if it were physically possible also!)

Thats about it really, there's a wealth of other things going on in the meantime but those things have become my normality now so I won't bore you with it all again!

Hope everybody is all well as can be, thanks for taking the time to read this and take care.
09-08-2011, 05:04 PM   #2
Natalie38
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HI,

Can you tell me more about the pill cam procedure? I have to go in for another colonoscopy next month and a friend of mine said that I should as about the pill cam. Sounds much less ontrusive!!!

Thanks
09-08-2011, 05:19 PM   #3
crag
 
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To be honest I don't know a huge amount about it myself until I recieve some paperwork. I think the preperation for it is pretty minimal though, and I'm told it's simply a large capsule that you ingest. It captures about 50,000 images of your tract, and I think the batteries run out arond the large intestine which is where the colonoscopy can view anyway. I believe it starts taking images as soon as you swallow it, apparently it takes a GI 3-4 hours to go through all the data so it's quite a time consuming test for them.

Sorry I can't offer anymore insight but I'll be posting on here once I've made some progress and I'm sure others will post with their experiences of it in the meantime. I hope you get the result you're looking for if you decide to pursue the pill camera route and nice to meet you too.
09-08-2011, 06:16 PM   #4
StarGirrrrl
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Hi crag, just a warning about the Pill Cam. Not all Hopsitals in the UK can order it like a normal test, they often have to get funding approval from the PCT, and the PCT will have a quite narrow criteria. If you can't find a Hospital in your "catchment" area that does the procedure then it's even more unlikely you'll get funding for it since that PCT won't want to spend the money on someone who isn't local. Of course in the UK you can get NHS treatment anywhere, but that only applies to freely available treatment, not expensive stuff.

My useless ex-GI wanted me to have it but the PCT wouldn't fund; had to meet criteria which were: aneamic through suspected small bowel bleed or have biopsies positive for CD. Of course they all have different criteria and some will give the test to anyone without needing approval.

I looked into having it done privately but the quote was 2500 which is half my annual income so couldn't get it either way.

Sorry I can't be more positive but I think from your posts you are in a similar health position to me (normal or majority normal tests), and for most of the people like us the funding for a Pill Cam is not there. I do hope you get it though and your PCT is better than mine!

Out of interest how did the drink for the hydrogen breath test go, were you okay with it?
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
09-09-2011, 05:30 AM   #5
littlemissh
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Hi Craig,
It is likely you will go to addenbrooks for your pill cam. Dr Woodward does most of them there and I don't think funding tends to be too much of a problem.

You are nil by mouth from the night before and then go to a dingy little office where they put electrodes all over your stomach attach a belt and monitor and then you swallow a large tablet sized capsule..very space age.
They let you go out, I went to the cinema in cambridge! You return 4 hours later and they take the belt off...thats it.
The wait for results can be a while though. When I had mine Dr woodward was the only one who looked through the images and he went on holiday!
Is very easy and straight forward to have done though.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
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09-09-2011, 06:38 AM   #6
StarGirrrrl
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Hi Littlemish, do you know if anyone can go to Addenbrooks with a referral and get a Pill Cam funded? As didn't realise it might be that simple, wouldn't be too much bother for me to travel there. I'm not up on NHS funding procedure but I did think home PCT funded outside treatment in which case I would still be denied. I will look into the rules.
09-09-2011, 08:27 AM   #7
crag
 
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I've been on the phone again and they have now referred me to Kettering for the procedure, it's only a half hour drive so bumming a lift with somebody shouldn't be an issue! Its scheduled for the 3rd October so I got just about everything crossed that it finally gets me on the road to recovery!

Star: I appreciate your advice still and I know it can't be too pleasant to be reading this. I actually considered not posting anything about it as I was well aware of the hardships you've suffered, I don't want to be the cause of making you feel worse than you already are. On the barium note I found the drink ok, any prep like that I just think back to days of knocking back weird and wonderful (mostly nasty) shots and do the same with whatever is put in front of me! The nurse dissolved some glucose crystals into water and I just chugged it down, tasted a little like icing sugar! Also I hope things went better for you at the doctors today too?

Hi again LMH, thank you for the extra info about the procedure, how are things with you? The prep sounds really straight forward at least, as does the test for that matter! To be honest I'd suffer almost anything right now if I thought that it would be of benefit, this limbo state is not easy! The fact this procedure is straight forward is a nice little bonus, I'll take any I can get at the moment! Here's to optimism!!!
09-09-2011, 10:09 AM   #8
littlemissh
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3rd October, that's pretty good. Seems like they are looking after you.Hopefully they can get the results out sharpish and you'll be one step nearer feeling better.

@star , anyone can go to Addenbrooks as it is a tertiary referral centre but I don't know about the funding.
09-09-2011, 11:17 AM   #9
StarGirrrrl
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I know it can't be too pleasant to be reading this. I actually considered not posting anything about it as I was well aware of the hardships you've suffered, I don't want to be the cause of making you feel worse than you already are. On the barium note I found the drink ok, any prep like that I just think back to days of knocking back weird and wonderful (mostly nasty) shots and do the same with whatever is put in front of me! The nurse dissolved some glucose crystals into water and I just chugged it down, tasted a little like icing sugar! Also I hope things went better for you at the doctors today too?
Oh no no you mustn't think like that, that is so kind, I am so pleased you can get it

I am certainly going to look into the funding issue.

I found the drink okay but it had a prep like effect on me so glad you were okay with it. Yes thanks I got some anti-biotics today, very pleased been getting sinus/ear/neck/jaw and even tooth pain for nearly 2 weeks.
09-09-2011, 01:35 PM   #10
crag
 
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I'm glad you feel that way star, I didn't think you'd be unhappy for me but I can also understand it must be frustrating for you too, I wish the NHS were more uniform, it seems they improvise sometimes to say the least!

I really wish you luck with the funding for it, seems almost criminal that they're withholding a test that could well shed some light on your issue. On a plus note I'm glad you finally got some compassion and treatment from your GP, there are some silver linings left in the world! I saw your post in the undiagnosed section too, wanted to let you know that a good dentist could actually help your case. My girlfriend is also undergoing tests at the moment and has had a recent hospital admission too. It was at a checkup dentists appointment a week later where she was diagnosed as anaemic, the dentist saw it as soon as he looked in her mouth and was shocked the hospital missed it! Laura hasn't had her follow up yet but they've already found gastritis in her stomach, I want to make sure the anemia goes on record at the hospital as there could be a link there.

LMH: yeah they are being pretty good to me and they're finally doing my referrals and things as urgent so I'm being seen a little quicker. I'm still having to do the phone calls and chasing up bookings, my last two tests have come quicker by speaking directly to the endoscopy suite. I'm always asked by the secretary "are you sure you don't mind ringing yourself?". But it's only a small price to pay when it gets me somewhere, plus if I end up losing my job I've found a second alternative!!!
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