Intense stomach pain PLEASE HELP

[Rose559]

My fiancé has been ill for as long as we remember, probably the last 5-6 years. He has had so many tests and they cannot find a cause, we have another doctor’s appointment today and I was wondering if anyone had experienced similar and if there’s anything specific to ask for. He can’t go on like this much longer, it’s obviously getting to him and affecting us as a couple/family too because he’s snappy and angry because he’s in pain.

He has intense pain in his stomach constantly, he cannot have any weight put on his stomach and he’s in excruciating pain, he feels sick from the moment he wakes up in the morning, he’s gassy/bloated, has a really low immune system and catches everything so constantly has coughs/colds.

He’s had gullbladder scans, camera into his stomach, various blood tests (although not testing for anything specifically). Toilet habits are completely normal so they haven’t tested anything related to bowels.

He had appendicitis a year ago and had his appendix out and ended up with blood clots on both lungs a year ago. Hasn’t really recovered from that.

I’m hoping there’s someone that’s experienced similar, just an idea of what to ask for as the doctors today? I’m going with him just to help advocate as he feels he’s not being taken seriously.

Have you heard of MALS? My SIL was diagnosed after years of stomach pain. She didn't have the weight loss associated with it. She did have IBS type symptoms though.

It’s so hard bless him!

He’s not on any meds and tried to watch what he eats. He doesn’t eat awful but could be better. He’s 6 foot 1 and 72-75kg, he’s lost weight recently and a lot of his muscle.

I will check if they tested for celiac. Not sure on manomerty, he’s really bad at actually finding out what tests are for which is why I’m going with him today to find out what they have and haven’t tested for.

I think that is probably the reason he is in so much pain. Untreated reflux is horrific. Do his doctors know he isn't taking his medication? He really should take it regularly and consistently. What is it called?

He was tested for it, had it and was given antibiotics but he didn’t feel much different after due to the other stomach/gut issues unfortunately.

Because they made absolutely zero difference and was advised by the doctor not to take because of the effect of long term meds on his vulnerable gut/stomach.

I haven’t, I’ll research thank you!

Yes they advised not to and no longer prescribe it as it wasn’t making any difference to symptoms. He’s been on Omeprazole and Lansoprazole (although I think these are the same thing?).

Given his diagnoses this is quite frankly ridiculous.

What dietary changes has he tried? If he's eating crap like Pot Noodles, he's not really taking care of his gut tbh which seems very strange with this much pain.

Has he tried a FODMAP diet? It's best to do this under a proper dietician (NOT a nutritionist) - if NHS referrals can't help soon, I'd look at the cost of seeing someone yourselves. He'll only need a couple of appointments, it can probably be done remotely and it'll take him a few months of effort to work through the exclusions and reintroduction process.

The doctor advised to stop taking them after 30 days of no changes due to a “vulnerable gut”. He’s no longer prescribed them.

OK, so what did they suggest next?

If he has the diagnoses you have mentioned and the doctor has advised no medication, he needs to see another doctor.

This is where it’s coming between us because I can only help him as much as he helps himself. I cook from scratch every day and eat really healthy. He’s tried a vegan diet, 16:8 fasting and a 48 hour fast, vegan diet and early morning fasting helped, the full fast didn’t. I know he feels better when eating healthy but he doesn’t stick to it. It takes him getting lowest of lows to do something about it and then it’s too late because he’s horrible to be around and I feel so guilty saying that.

The only things he’s had since is a gallbladder scan which found small polyps which apparently aren’t a worry and a tube in his stomach for 24 hours which found nothing.

This is the 4th doctor we’re seeing today, he’s asked for a different doctor specifically and this one is the manager of the practice.

I should say 4th GP, we’ve seen many other doctors/nurses/medical professionals throughout this.

Disclaimer - Not a doctor lol!

Omeprazole and lanzoprezole are pretty much the same thing. The latter being slightly better and more expensive to prescribe.

I don't know about being told not to take them though. They are gently on the stomach and help stop acid which burns holes (ulcers) in the stomach so I don't know if you've misunderstood that?

You can also get similar meds which mean less acid. Im on famotidine. Perhaps that would be worth a go.

If he has silent reflux it creeps up the throat and can eventually cause cancer etc so he really needs to take the meds.
Ask the gp about what I'm saying to make sure it's appropriate for him though.

He needs more tests to get to the bottom of it all. And he needs to stop eating crap. A basic bland diet for at least three days of just chicken and white rice or white bread and tea or water to drink is a good starting point. No fizzy drinks. No acidic fruit and veg at all. No wholemeal anything. Bland.

Google fodmap foods.

If symptoms improve introduce one other fodmap food and see how it goes for three days, then introduce another food and see how it goes for three days.

If symptoms don't initially improve switch to gluten free white bread.

Keep a food diary. He can't go on like this. He needs a camera up inside him to see what's happening if diet makes no difference.

He has a hiatus hernia and severe reflux, he has had a stomach ulcer and this is all untreated/he also eats rubbish.

I don't understand why you are seeking a further diagnosis?

See the thing with reflux you have to do your part. You can't just carry on with the diet and habits you've been doing. Or it just gets worse and you suffer.

He needs to follow the GERD diet for a month, sleep with the head of the bed propped up and stay completely off caffeine and alcohol. It's bland, tasteless and it sucks but symptoms do improve a lot. Then it's re introduce to see what triggers are, look after your diet and stay off triggers for good.

If he's not willing to put the work in then he needs to be told to stop complaining about it.

@Rose559 He has significant diagnoses already to explain his pain but how does he know the h.pylori has actually cleared? He needs to be clearer about how the gp is asking him to manage his condition, if that needs you to go with him and he have a full discussion with the GP with you there, so be it. But ultimately ,if he’s eating pasties and pot noodle, that sort of diet / eating pattern is awful for digestive issues…he has to take the steps himself to change his diet. Would he consider working with a naturopath, he may need some advice on rebuilding his gut biome as treatment for h.pylori will have wiped out all his good bacteria.

Not the same but same group. Omeprazole is usually tried first, then lanzoprazole. Lanzoprazole has to be taken at least an hour before any food, so not quite so easy to manage. They both take at least a couple of weeks to kick in. MALS is a good shout. It is incredibly rare so most doctors won't have heard of it. The pain with MALS is intense and comes on after eating. With reflux and ulcers the pain is helped a bit by eating.

Thank you. Will ask about these today. I think it was because he was having intense “flare ups” he was told to stop taking them whilst they did further tests but have now drawn a blank and aren’t sure what to do.

I do tell him again and again about diet. He tried a 2 day fast and that didn’t do anything. He’s always Googling/watching videos on things to do to help but I know he doesn’t stick to many of them. He’s yet to find anything that’s really helped though.

Will try a food diary again. Thank you.

Intense pain sounds like gastritis.

H. pylori can be a bitch to get rid of.

@Rose559 p.s. you’ve mentioned fasting a few times…this is NOT advised for people with significant stomach acid issues.

His diet isn’t awful, I just know he could eat better. Doctor advised to stop taking meds whilst they were doing further testing but this has drawn blanks. He just doesn’t want to be in pain every day. The doctor said reflux wouldn’t be causing the intense pain he’s in which is why they’ve done further tests.