To ask for help with a medical diagnosis?

[Nidan2Sandan]

Okay, not an actual diagnosis as I realise this is an internet forum blah blah blah. But I'm at my wits end and I hoped with the variety of people on here that someone, somewhere has the same issues and can point me in the right direction. So here goes.......sorry it'll be long

I have always suffered with stomach ache. Right in the middle where my solar plexus is. I remember as a child rolling in a ball, screaming in pain. My mum describes me as a baby doing the same, pulling my legs up and just being inconsolable. But it didnt happen often, once every few months and would last for a few hours at most.

As I've gotten older it's gotten worse, to the point the pain is almost permanent. To describe it, it feels like my stomach is being eaten from the inside. Most of the time it's there just as a dull ache, but I have what I call "episodes" where its debilitating agony and I will often feel sick, dizzy and just moving/talking hurts.

I'm an active person, karate instructor, I run, i have 3 kids and the stomach pains are really starting to affect my daily life more and more each year. I havent been able to teach at my karate club for the last 2 weeks and had to leave work early one day this week.

I've seen doctors and hospital consultants. I've had a camera down the throat (endoscopy??) and an ultrasound. All sorts of tests etc.

So far I had a week in 2010 where the hospital thought I had an infection, maybe gall bladder or pancreatitis and was kept in for a week. I showed infection markers but everything else was fine and I was sent home (I was 12 weeks pregnant with my second DC). Ultrasound was unremarkable and endoscopy showed no issues.

I've had lansoprazole, esoprazole, omeprazole (excuse spelling, I'm not 100% sure on how to spell these) and over the last few years given amitriptyline for what Drs now say is a chronic pain condition with no known cause.

I take rennies and sometimes they help, often they dont but it feels acidic, like I say, like my stomach is being eaten away. Oh and when in pain, I burp like you wouldnt believe!!! Again, makes me think stomach acid.

So, I have Drs saying unknown chronic pain condition. Medication does fuck all and my life is slowly being taken over by it. I'm worried about the next years.

Oh, should also say i have had allergy testing and avoid foods i cant eat. Have tried gluten free, FODMAP etc to no avail.

So, any bright MNetters have any ideas? Is there a Dr on here that may have a suggestion?

@WellLarDeDar

Have they asked you to do a potato diet? I was told to eat only potatoes for a week and then gradually introduce one new thing at a time until I had symptoms again. It's a pain in the arse to do but if you're reacting badly to a specific food or food group then it is effective in identifying what it is. You get very good at cooking potatoes in different ways!

On the other hand I knew some who used to drink pure aloe vera juice. Most disgusting thing ever but he swore by it.

Potatoe diet is a new one!

Another vote for mal rotation- an upper GI contrast study would be the test to rule it out. It can present with intermittent volvulus which is very painful!

@Nidan2Sandan

Endoscopy showed no signs of ulcers which I think the h pylorican cause?

Yes it can, but you don’t have to have ulcers to have pain. It can also take a good while to heal after an infection. I’d definitely get checked to make sure it has been eradicated.

@HappyHippoWhatAMess

Another vote for mal rotation- an upper GI contrast study would be the test to rule it out. It can present with intermittent volvulus which is very painful!

Just a quick google says patients often dont gain weight, I dont have an issue with this. If anything I'm a stone or two over weight, but otherwise a lot of symptoms do match up.

Yes it can, but you don’t have to have ulcers to have pain. It can also take a good while to heal after an infection. I’d definitely get checked to make sure it has been eradicated

I'll definitely get this checked again (once I can actually access a GP appointment ) as I wasnt aware it can continue after treatment.

What about gallbladder dyskinesia? I have this and was only diagnosed after a hida scan, which doctors were very reluctant to offer in the beginning. It presents like gallstones and causes episodes but basically the gallbladder isn't emptying as quickly as it should. It doesn't show up in ct or mri scans, it can only be confirmed in the hida scan.

Sorry op, what a nightmare situation for you. I'd probably seek further investigations to rule out all forms of IBD again.

Have they done a barium xray? MRI? CT?
Checked for coeliac?

@PlatinumDollFace

What about gallbladder dyskinesia? I have this and was only diagnosed after a hida scan, which doctors were very reluctant to offer in the beginning. It presents like gallstones and causes episodes but basically the gallbladder isn't emptying as quickly as it should. It doesn't show up in ct or mri scans, it can only be confirmed in the hida scan.

Off to Google this one!

I've had so many issues of GPs just throwing tablets at me, and the last one asking me if I was depressed making me feel like he thought I was making it up.

I just cant seem to get them to understand how much this rules my life!

Have they done a barium xray? MRI? CT?
Checked for coeliac?

Coeliac has been ruled out, only scan has been an ultrasound.

Bile acid malabsorption?

Doing FODMAP that way is really unreliable - most info on the Internet is bollocks about FODMAP, it should really only be done under proper guidance with proper support, especially with the reintroducing phase. Definitely worth speaking to a nutritionist in that case. They can also talk through other things that could be relevant.

I have acid indigestion which I take omeprazole for. Sometimes it's just not quite enough. I then top it up with own brand gaviscon (generally bought from the online pharmacies) which really does fix it.

For pain Inc burping it's also worth trying simethicone (brand name windeze) as this can help settle trapped wind which can be very painful.

The other pain problem I have is basically the idea that the muscles in your intestines can get "confused" for want of a better word, and be pushing against each other/in spasm - for that I used to take mebeverine which can be prescribed if you need it regularly or is available over the counter so could be worth a try.

OP

I’m a doctor, though not a gastroenterologist. I suspect that you have had most of the investigations that are sensible by the sound of things. As far as I can tell from your posts you’ve had coeliac/other allergies tested for and/or ruled out by dietary exclusions. You’ve had a scope to rule out reflux/gastritis/ulcers etc excluded and also no structural abnormalities were found. An ultrasound has shown no evidence of pancreatic/gall-bladder or liver problems. Bloods are not showing anything obvious in terms of a genuine inflammatory bowel disease. I am not clear if you’ve had a colonoscopy as you say you’ve had Crohn’s disease excluded (usually try to exclude ulcerative colitis too- usually needs colonoscopy too- but may not be deemed necessary in your case). Sometimes faecal calproctin is used, though I think this is more commonly used in paediatric cases/suspected paediatric cases and for monitoring IBD activity (caveat- not my area of expertise).

You have also been treated for both reflux (by use of PPI medication, such as lansoprazole) and by eradication of h pylori- though honestly for it to be the cause of pain of this duration and severity I would expect to see some changes on endoscopy- e.g. gastritis/ oesophagitis/ duodenitis (inflammation of the stomach lining/small bowel mucosa/oesophageal mucosa- caused by excess acid). It’s not impossible for it to be causing this degree of pain for such a long time, I suppose, it’s just that I would expect to see evidence of inflammation or ulceration. You could ask your gp to do a test of cure with regards to H. Pylori if you wanted to.

As to what it could be- well, once you’ve excluded the common things you are left with the uncommon things and “diagnosis of exclusion” things- I.e. chronic pain and IBS (no tests to prove it is either of these, diagnosis is made on basis of history and tests for differential diagnoses have ruled them out). It could be a variant of IBS or it may well be a chronic pain syndrome- sometimes these chronic pain syndromes are termed “functional” which means they don’t have a physical cause that we can diagnose (I’m not arrogant enough to assume that there will not be new conditions which we identify in the future).

A lot of patients think when we say “functional” that we mean “in your head” or “you are making it up”- what we are actually saying is more nuanced than that. What we are saying is that there is no physical pathology that we can identify but we do accept that the symptoms/pain you experience are genuinely being felt- your nervous system/brain has gone a bit haywire in some way causing you to feel pain without an actual physical trigger. It can be somatisation (physical expression of mental anguish/stress/low mood/anxiety) in some cases- there is a well documented link. But not in all cases.

Not sure if any of that helps, but that would be my take. With the caveat, as I say, that I am not a gastroenterologist or surgeon so not my area of expertise.

I was the exact same, they told me it presented like gallstones but couldn't see anything so prescribed painkillers and that was it. I refused and pushed for more treatment because the episodes are so debilitating and I was referred for this scan by a surgeon. Once I was diagnosed, they prescribed me Amitriptyline too so there's lots of similarities!

@Nidan2Sandan

Yes it can, but you don’t have to have ulcers to have pain. It can also take a good while to heal after an infection. I’d definitely get checked to make sure it has been eradicated

I'll definitely get this checked again (once I can actually access a GP appointment ) as I wasnt aware it can continue after treatment.

Unfortunately yes, which is why they have several different antibiotic protocols for it. Might not be, but at least then you can exclude it. I have had eradication confirmed but still have some issues. Probiotics seem to help a bit though.

If they have an e-consult form just ask them to arrange a test for you.

Have a look at sphincter off oddi dysfunction.

Have you had a colonoscopy? Could it be referred pain? I too suffered for years but it was only when I started having other issues that I had a colonoscopy to be informed I had crohns disease.

When you have an attack, does bringing your knees to your chest and putting your arms above your head help?

I have a long history of GI problems. I would really urge you to go back Re: H pylori to ensure it's gone.

I had it about 7 years ago, did the triple therapy, symptoms improved and it was assumed that it had gone. 5 years later I had a gnawing pain that came on slowly, lots of burping and stool test showed H.Plyori. It had not gone from the first treatment. Had differ triple therapy treatment. Endoscopy showed no inflammation, ulcers etc. Pain continued and was unlike anything I'd had before. Felt like my stomach was being eaten. Had every PPI going with little relief. I then changed my diet, cut out all sugar, increased fruit, veg, nuts & seeds & all symptoms resolved.

Diet slipped (as they do!) And 10 months later GI issues reappear but this time, after much farting around I was diagnosed with stage 3 oesophageal cancer. Untreated H.P is a factor.

The massive red flag that was missed was PPI's gave no relief, endoscopy was fine, yet a CT, barium swallow etc were not done. I was fobbed off because I am young and it was assumed by some that it was anxiety, in my head, as endoscopy was fine.

You know when there is something wrong. I saw 8 doctors, including 4 gastroenterologists before I finally got a diagnosis (privately). It is not normal to live with pain like this.

As an aside I had similar issues getting my Coeliac diagnosis. Went to GP's every month for a year with pain & several told me to do Pilates and CBT!

Could it be an ulcer

@SickofCovid

Have you had a colonoscopy? Could it be referred pain? I too suffered for years but it was only when I started having other issues that I had a colonoscopy to be informed I had crohns disease.

I am also wondering if you may need this investigation.

When you say Coeliac disease has been ruled out, have you had a genetic test and biopsies? Mine was missed for years because the antibody test was negative, finally diagnosed with biopsies
My son was diagnosed with no gut symptoms apart from pain, he also had negative antibody test

Abdominal adhesions?

I agree about getting tested for H pylori again.

You say milk soothes it, which does suggest an acid problem - milk can help in the short-term but make things worse longer term. Personally I would exclude all gluten and dairy again for at least a month and go with a wholefood diet as much as possible.

Also worth looking for any random food which might be a trigger for you. I had years of indigestion, heartburn and terrible burping (nothing like the pain you're obviously in, but I lived on gaviscon) and only recently realised both cheddar and chilli are my big triggers - now I've completely eliminated them (so many things have chilli added!) I'm better than I ever thought I would be.

I would add I've had GI issues in my solar plexus for as long as I can remember. It's where I hold all my tension. A bit woo but energy therapy has really helped with this. I'm a nurse but really wish I'd looked at alternative therapies earlier, as they offer a lot with GI stuff.