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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to crowdsource a diagnosis (getting desperate!)

36 replies

snappedandfarted123 · 09/07/2019 07:02

Ok I know this is the wrong place but stuck and getting nowhere with the NHS, just wondered if anyone has experienced similar and could suggest what might be wrong with my poor DH?
He's been ill for 9 weeks. Very bad dull abdominal pain. Originally suspected appendicitis but cleared on ultrasound and sent home. Since then pain pretty much constant, local to upper right abdomen. Plus feeling bloated all the time. he's on Max dose paracetamol and strong codeine to manage it. He's very weak and unable to work (tearing his hair out) or do anything really without being exhausted. But ultrasound, CT scan and all bloods come back clear so both gp and hospital convinced nothing wrong with him. He's lost upwards of 7kg since this started and he was a normal healthy weight before so he's thin now. We're really worried and not getting anywhere. I'm hoping someone might have experienced something similar?
Help!

OP posts:
Lockheart · 09/07/2019 07:04

In the kindest way possible, YABU. People on here could come up with 101 diagnoses based on their own experience, none of which may be correct.

You need to push with your real life medical professionals. Is there any way you could seek a private diagnosis?

Cantthinkofanythingrightnow · 09/07/2019 07:09

I'm sorry you're going through this Flowers

Sadly I don't think anyone here will be able to help if they can't see an answer on a CT scan.

Can he go back to the GP again and ask for another referral? They surely can't let him live like this.

RedSheep73 · 09/07/2019 07:11

Keep going back to the doctors and don't let them fob you off.

0nTheEdge · 09/07/2019 07:11

Ask to see another Dr, specialist or try a different hospital? You need another opinion but not from people without a medical background, although you could get that on here you might get a load of non helpful replies.
It certainly sounds like something is going on and if he's still in pain, losing weight, etc. Then you need to keep going back to the hospital. Hope he gets better soon OP.

Divgirl2 · 09/07/2019 07:15

No one on here can diagnose him but upper right would suggest liver or gall bladder rather than appendix.

Tell him to watch out for changes to his stools (colour, consistency), and any yellowing of his skin or eyes.

Saying that, I imagine based on his symptoms the GP would have done a full liver work up so it's probably already been ruled out. No chance you can pay for a private GP appointment? They can refer you on to NHS specialists so it would just be that initial consultation that you'd pay for.

ravenshope · 09/07/2019 07:15

could it be some sort of digestive problem, he could ask for endoscopy and colonoscopy?
I get similar pains when eating bread.
But I agree with others, he needs to go back to GP- different one if necessary- and explain that it's ongoing and affecting his life, including any ability to work, and he needs to know what is wrong.
As an aside, codeine commonly causes constipation so could that be worsening his pain and bloating?

JAPAB · 09/07/2019 07:17

I don't know the answer but some of it sounds similar to someone I knew who had a suspected parasite. Although they also had a loss of appetite and vomiting, in addition to the pain and feeling bloated. They took some sort of anti-biotic and it went away. Hope they find the answer.

Soontobe60 · 09/07/2019 16:58

OP, could it be psychosomatic? Is he stressed at work? Home?

groundanchochillipowder · 09/07/2019 17:03

YANBU

SnuggyBuggy · 09/07/2019 17:39

Food diary maybe

Wolfff · 09/07/2019 17:43

It will reveal itself. FWIW I had vague symptoms for years and it turned out to be my gall bladder which wasn’t picked up on ultrasounds initially.

mrsjoyfulprizeforraffiawork · 09/07/2019 17:50

Med sec here. He should have colonoscopy and, if that is normal, gastroscopy (or in reverse order). Gp should be able to refer for this I think. He really needs to be under cons gastroenterologist to oversee proper investigation. Any chance you could afford a private consultation with a cons gastroenterologist as a one off to see what further investigations they advise/opinion they have about possible causes? If you get them to give you med report with recommendations you can then show it to gp. If you do do this, see if you can get copies of scan reports and bloods to show consultant results so far when you see him.

LaurieFairyCake · 09/07/2019 17:51

He needs a colonoscopy. The lead story on the Daily Mail this morning was bowel cancer in young, fit individuals.

Thanks I hope it's not that

groundanchochillipowder · 09/07/2019 17:53

No one should be left like this, tbh. 7kg is a lot in 9 weeks in a fit, healthy person who isn't trying to lose weight.

mrsjoyfulprizeforraffiawork · 09/07/2019 17:55

In my opinion (working in private sector for 30years so far, don't bother with private gp, just go see private cons gastroenterologist as I suggested above. Most would see you without a referral from gp. No need to waste your dosh!

Chartreuser · 09/07/2019 17:59

I get my pain from gastritis/ulcer upper right, was exactly the same as your DH and referred for appendix and gall bladder before being given all clear.

Codeine can exacerbate symptoms.

Is he burping a lot? Feeling sick? Getting full v quickly

SimplySteveRedux · 09/07/2019 18:04

Since then pain pretty much constant, local to upper right abdomen

Any jaundice? Nausea? Dark urine? Right Upper Quadrant pain could very much be gallstones, the pain can ramp up to excruciating, and if it is gallstones there are likely more in the gallbladder which can because inflamed and rupture, which isn't very nice whatsoever.

He needs to go to GP, OOH docs, or A&E. If you rang 111, they would want to send an ambowhambo.

MrsMozartMkII · 09/07/2019 18:08

My sister went through something similar. Here's turned out to be sphincter of oddi dysfunction.

SimplySteveRedux · 09/07/2019 18:09

I imagine based on his symptoms the GP would have done a full liver work up so it's probably already been ruled ou

I had severe cholecystitis, bloods were all normal for liver. 12 hours later I was in surgery having a gallbladder that was very inflamed and about to rupture removed.

You need to push OP, I was fobbed off by the hospital four times before a senior doctor requested imaging studies that showed the above.

TenDays · 09/07/2019 18:31

Get a second (or whatever) opinion. He shouldn't be in pain like that.

Original poster
snappedandfarted123 · 09/07/2019 21:34

Thanks everyone! Sorry for disappearing, manic day. This is all really useful. Interesting so many people say gall bladder as several people IRL said that too. Good news: we have a private gastro appt this week!
Bad news.. the NHS one we were supposed to get was called off (and he referred instead to a dietitian) because the GP had not written a referral (he was referred from a&e). Turns out despite promising a letter the GP hadn't sent it for two weeks because of staff annual leave...! :'(
But fingers very much crossed for the private appt, just the scope, if needed might bankrupt us!
Those who had mystery gall bladder things... how were you eventually diagnosed? Cos obvs a scope would be clear if it was that I guess?
Thanks for such great comments!

OP posts:
groundanchochillipowder · 09/07/2019 23:01

FFS, they referred a person who is in pain and losing weight to a dietician? The NHS is hopeless.

Floatyboat · 10/07/2019 00:41

How old is he?

TheNanny23 · 10/07/2019 00:54

Most gall bladder problems would show up on CT...
That’s an awful lot of weight to lose. It’s really difficult to say without knowing about his stool, urine, vomiting, appetite, and more of a history but it doesn’t sound unreasonable to ask for an urgent colonoscopy as the next step. When I did a surgical job after CT if there was no cause found for pain many people would have a ‘top & tail’ gastroscope and Colonoscopy. Someone mentioned psychosomatic and certainly it’s a very common cause of abdominal pain but somatoform pain is a diagnosis of exclusion- he needs more tests and review.

Original poster
snappedandfarted123 · 10/07/2019 06:09

The hospital won't give him a colonoscopy, we already waited five weeks from initial a&e referral and then only with much chasing found out it had been changed to dietitian. It's a nightmare you have to ring different people every day to chase things and hardly anyone ever knows what's going on. Gp similar, requires constant chasing and basically said to me "what do you expect me to do when ask the tests are clear?"
His appetite is reduced plus feeling "full"all the time plus often nauseous doesn't help, but he's getting two meals a day currently (no dairy or meat)
Has had two (presumably normal) still samples and one urine sample with a trace of blood. But liver kidney function OK on bloods.
It could be stress related. We're at a tricky stage of life but no more so than a year or two or three years ago really. He tends towards anxiety and his usual response to stress would be to get the runs basically, so different to this. Plus this is very consistent, no "good days" which makes me think not stress.
As an example he's a runner who would think nothing of a fifteen plus mile trail run before this. Most he's managed since is a one mile dog walk. That is his "good day"!

OP posts:
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