Been dealing with an issue for 14 months and c... - IBS Network

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Been dealing with an issue for 14 months and can’t get diagnosed!! Opinions and thoughts needed!

jmoose profile image
6 Replies

Hi all, thought I’d reach out and share what I assume is a gastro-related issue that I’ve been dealing with for a while (approx 2 years), in hope to get some ideas and direction on how to get this diagnosed and treated within the NHS - because so far, with all the visits to the GP, trips to the hospital and all the tests that have been done...nothing is coming up conclusive and I am getting nowhere in terms of receiving proactive efforts in getting this properly looked into. Unfortunately, with no health insurance willing to cover me for an 'existing issue', despite being undiagnosed with anything, I can't even get covered to go private.

Desperately asking for advice to get dedicated, professional support on what I'm experiencing as it is affecting all aspects of my life.

————

I’ve had 7 'episodes' over the past 2 years, consisting of:

1) Out of nowhere, within a matter of 30 seconds I get a sudden feeling of a tennis ball stuck in my stomach (just below my ribs). Sometimes can be after a meal (however no consistent dietary triggers identified), or after exercise - but generally I haven't been able to spot a trigger pattern.

2) this is then followed by 12-24 straight hours of constant vomiting and nausea, literally constant, heaving every 10-15 mins. Vomit will go from orange/recently consumed food to green acidic bile, and in bad cases, dark green bile (but not brown, no blood).

3) once I’ve emptied, this is followed by 6-12 days of extreme nausea, tightness, cramps in my entire stomach area, and the inability of eating or drinking (no appetite whatsoever and if I try to eat, I would shorty later throw up), and major difficulty with things such as sleeping, can't watch tv, walking, and even talking. Only thing going through my mind is the constant nausea.

4) After What seems to be a 10-14 day cycle per episode, I would eventually but suddenly come back to normal, almost feels like something has switched back to normal in my stomach, and start to recover my appetite, and needing to mainly replenish my dehydration via dioralyte, high nutrient drinks, beige foods, drinking the occasional Esure drink, and in some cases requiring to go to hospital to have an IV drip. As quickly as the episode 'turns on', it just as quickly 'turns off' and I can feel the energy throughout my body from head to toe being recirculated back to normal.

Notes for consideration:

- I cannot naturally burp, never have been able to. I have to self induce it to relieve any discomfort. Happens a lot after meals, having drinks. I tend to get “gurgling” rumbling noises a lot coming up my windpipe and hits the back of my throat, but the air doesn’t come out, just stops there and assumingly goes back down.

- there doesn’t seem to be any obvious trigger or pattern causing the episodes. Have tried a variety of diets but nothing has proved conclusive.

- Update June 2022: have done a variety of tests, including various blood/stool/urine tests, Heliobacter, liver, kidney, CT scan of the stomach area, barium swallow, but nothing has shown any issue. I had an endoscopy early this year, which potentially raised Barretts Oesophagus in my foodpipe, which may be a contributing factor but doesn't explain the episodes.

- no anti-sickness works to stop the sickness during the episode, even Ondansetron.

- a private gastro consultant reckons it could be something “mechanical”, such as a twist of some sort, due to how quickly the episodes switch on and off. And could be due to a combination of the non burping + the Barrett's Oesophagus, but he said it's just a guess and he's never experienced a patient experiencing these episodic symtoms.

- during an episode, I have lost up to 2.5 stone in just 2 weeks.

- no diarrhoea or urinary issues.

Think that’s all I’ve got to mention. If anyone has experienced anything similar, or has any advice in terms of getting this looked into within the NHS - please reach out!

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jmoose
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6 Replies
b1b1b1 profile image
b1b1b1

Are you seeing a gastroenterologist. If not, you should.

3443Ness profile image
3443Ness

Sounds horrible hope you get sorted soon

xjrs profile image
xjrs

What you describe are not typical symptoms of IBS.

The most sensible thing I think you've been told is:

- a private gastro consultant has recommended that I take a barium swallow test plus an endoscopy as soon as possible. He reckons it could be something “mechanical”, such as a twist of some sort, due to how quickly the episodes switch on and off.

Have you had, asked for or been offered this? If you are in the UK and not getting the support you need you could make a complaint to PALs:

nhs.uk/nhs-services/hospita...

Reflux1 profile image
Reflux1

Hi sorry to hear of your problems, how old are you? I'm sure the NICE recommendations for people aged 55 and over who present with problems of reflux and have lost weight, should be referred for an endoscopy. I have recently been referred for an endoscopy after meeting these recommendations. If you are 55 or older ask your doctor in UK for referral. Hope you start to feel better.

jmoose profile image
jmoose in reply toReflux1

Hi! Thanks for responding, I’m 30 years old!

Reflux1 profile image
Reflux1

Oh ok, tell your GP what the gastroenterologist recommended and ask to be referred for a barium swallow test or an endoscopy, hope you get some answers

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