Re: Xmas ruined by chronic condition. Pls help!

[LemonysSnicket]

Okay so my Xmas had been ruined by poor DPs chronic condition... we’ve been trying to find a diagnosis for 3YEARS. We’ve had no luck. A lot of the tests we ask for ( for certain cancers, scans w/e - my DSis is a doc) they say we don’t need or that he’s very young so it’s unlikely ( he’s 23).

Symptoms:
At min every 2-3 weeks ( occasionally more) DP wakes up in agony. He says upper stomach just below his sternum feels like it’s ‘burning’ and tight and something’s almost vibrating but 100% worse than heartburn or reflux type pain.
Throughout the day of this pain he will violently vomit, not be able to sit up straight and can’t eat.
He has lost so much weight that at 6 ft he now weighs 9st 7 ... just a stone more than me and he is 10 inches taller than me!!
We cut out dairy and that seemed to help for a bit and now it’s gotten worse.
He’s had an endoscopy and biopsy ( clear),
We’re trying to cut out gluten in jan to see if it’s that.
Stress, eating too quickly or too much can prompt it he thinks.

He’s so unwell ... it’s ruining every holiday we go on, every festive season, birthdays... stress from exams and he has to take days off work every month.
Doctors just say it’s IBS but offer no more ,no painkillers, no note, no treatment.

Please ... any ideas?

Has he been checked for gallstones?

Has he been checked for h pylori or a stomach ulcer?

Surely if the likely things have been ruled out, it could be something unlikely. Has he had his stomach acid monitored for levels of acidity? I don't know if that's available on NHS, though.

Sounds like his gallbladder to me also.

Stomach migraines

They’ve checked for stomach ulcer and h pylori and both negative , they haven’t checked for gallstones and I’ve never heard of stomach migraines!!
I’m trying to just find some things it could be so he can ask for tests ( we will get Bupa or go private if need be ) so all of these are very helpful!

Stomach migraines are also known as cyclical vomiting. Could be that?

They have suggested cyclical vomiting syndrome before! But the antidepressants used to treat really disagreed with him! Will maybe see if there are any other angles of treatment for this. Thanks!

Sounds like stomach migraine to me too. I’d never heard of them until I had a head injury which resulted in a very serious migraine of the more traditional type and realised that that was what my ‘IBS’ was. I’d had a clear endoscopy and gastroeoscophy too.

Wow okay, the general consensus seems to be SM then!
@whitershadeofpale how were you treated for this and did it help, are you less affected now?
I’d literally do anything at this point for the bloody thing to fuck off and stop making me thing my DP is going to waste away ( everyone keeps commenting that he looks gaunt - his waist is at 24”, :( and I could play his ribs like a piano)

Have you considered Porphyria? Some of your symptoms match but others you haven’t mentioned.

www.mayoclinic.org/diseases-conditions/porphyria/symptoms-causes/syc-20356066

I had nortriptoline (sp?) at first. But it made me too drowsy. I then got migraleve a nose spray that I take as soon as I feel it coming on which is great, but you do have to have one to hand. There were other one a day tablets but when I started low carbing an unexpected side effect was that the attacks were much less frequent so I prefer the take the spray if needed.

Sounds like gallstones or sphincter of oddi dysfunction. Hope you get things sorted

Oh gosh the poor thing. I had similar symptoms throughout most of last year. The pain just below the sternum was unbearable at times to the point I couldn't stand up straight. I would vomit quite violently too. I was fobbed off for months and told it was indigestion or maybe an ulcer and prescribed lansoprazole. I was told it couldn't possibly be gallstones as I didn't have the 'classic' symptoms of pain in the right shoulder or upper right side of my back. I was eventually sent for an ultrasound scan in the November (to appease my anxiety apparently) and was instantly diagnosed with multiple gallstones and my gallbladder had actually collapsed around them. I had to follow a very low fat diet (which didn't really improve matters). Christmas last year was ruined . I got a cancellation appointment in February this year and had my gallbladder removed and have felt great ever since. It may not be his gallbladder but it's certainly worth asking for an ultrasound to rule it out.

Sounds like gallstones to me too

Gallbladder. Kept a food diary?

Thanks everyone, he’s booked in for an ultrasound on Jan 8th!

Had he spoken to a nutritionist? He may want to try the FODMAP exclusion diet, but also think about how to put a little weight back on. A proper nutritionist would help with that.

Keep us posted

Sympathies op. Christmas with on going illness is pretty crap. Is he on any on going medication that could have caused an ulcer??

Don’t cut out gluten before having the proper blood tests for coeliac disease as if you do the tests won’t show anything. I would be asking for those (coeliac blood tests) if you haven’t had those.

However, just for reference, I had the WORST ibs ever as a young twenty something. I would literally come home from wherever I’d been and lie on the floor in agony for hours. I’d have completely random episodes of torrential diarrhoea and have to literally run to the nearest toilet. It was awful and it got to the point I didn’t want to go out at all. Every time I went anywhere I had to plan it around if there was a nearby toilet! Nothing worked, no meds helped and I tried everything.

Then all of a sudden - when I was 25 ish- it just suddenly stopped! I hadn’t changed anything, it just suddenly went away. And I haven’t had anything like it since - I’m now 37.

So bodies are very strange things indeed!

Has he been checked for IBD (crohns, colitis etc)? Has he has a colonoscopy? I would push for a referral to see a gastroenterologist if not.

I would think gallstones too

IME...sounds like gallbladder/gallstones.

This is a bit of a strange question, but when he can feel an episode building does he get sulphur-y foul burps?

A couple of times a year I have an episode like you described and the first clue it's starting are awful sulphur burps, this builds into agonising cramping pains exactly in the same spot as your dp and then eventually d&v for around a day, followed by a day of exhaustion where I sleep almost solidly and then I'm fine again til the next time.

The only thing I have found that helps is alka seltzer and then it only helps by accelerating me to the vomiting and exhaustion and cutting out the hours of pain.