Just home from a week in hospital no answers still feeling awful any advice?

[Ihavenoideawhatmybodydoes]

I have been unwell for a month or so really upset stomach very weak and dizzy i cant even really walk around my own house without being exhausted. I have lost 30 pounds since november.

things came to a head a week or so ago and my gp sent me into hospital where i was for 8 days. They said i was extremely dehyrated so i had 48 hours of iv fluids, they also did various tests. The blood results were mostly fine the only one that came back out was a stool test for inflammation i think it was calrotectin which they said should have been under 250 but mine was 1200.

the consultant said he suspected something autoimmunes whichnis why ive posted here! I had various tests for this but they seemed to come back negative.

they did an endoscopy and sigmoidoscopy they found i have barrats esophagus and a hernia but that wouldnt explain my
symptoms . They took biospsies looking for microscopic colitis(?) but they take a long time to come back and seems like a small chance anyway.

they upped my bp meds as my blood prrssure was sky rocketing when i was standing. And doubled the lanzoprozole (i have been taking since havign an ulcer)

in the end i was discharged because they couldnt reallt do anything else but i still feel so shit.

still have diahrea , incredibly weak and shaky.

has anyone seen this pattern before im really not sure at all whats goign on now

It sounds like you may well have IBD. You may need a colonoscopy to see higher in the large bowel for inflammation, or a pill camera or small bowel MRI so that they have visualised your full intestines. Calprotectin is the stool test used to indicate levels of inflammation in the gut. Have they arranged a follow up appointment with a gastroenterologist? If not then please chase up an urgent referral from your gp. Sadly IBD can sometimes take a while before it’s diagnosed.

Have they ruled out IBD?

You need a GP appointment to get to explain what has happened so far and find out what the plan is next.

No they just said they coudlnt find a cause and asked cardiology to look into my blood pressure (i alresdy have diagnosis of inappropriate tachycardia and orthostatic intolerance - but this doesnt affect my stomach) . I have always had to be careful what i eat - no really greasy food etc. but now i cant seem to eat anything at all!

Sigmoidoscopy will rule out one type of IBD, ulcerative colitis, but its not able to rule out the most common variants of Crohn's disease (another type). Full colonoscopy, an MRI, and sometimes a small bowel capsule endoscopy (pill cam) are the tests that most often manage to detect it. I'd be chasing urgent referrals to gastro and for further investigations. Unfortunately they are often very slow to diagnose - you do need to push to make sure you don't drop through the cracks

Have you had an early morning cortisol blood test (must be done between 8-9am) to exclude adrenal insufficiency / Addisons? Have a google about it all. My main symptoms were chronic diarrhoea, weight loss etc. It’s very rare but worth ruling out.

I would perhaps pester the consultant or your gp about the barratts oesophagus as this can lead to cancer but there are treatments. One of my family had regular laser treatment and later specific medication and they celebrate their 90th this year.

That’s nuts. How can they see that test result (plus your symptoms) and not be doing all the tests to rule IBD in or out? Bizarre. Please do ask your gp to refer you to a gastro clinic. Take your discharge letter with you to the gps, as I know my surgery can sometimes take weeks to scan letters onto the system, so at least if you take yours they can read it when they see you if it’s not already accessible to them.

I’ll just add, your symptoms are very much like mine were when I first got really sick before being diagnosed with Crohns. I saw a gastro who sent me for a colonoscopy and they found inflammation just where the small and large bowel meet. It’s a fairly common place for it to be, though it can be anywhere from mouth to bum (hence scans and pill cams being needed sometimes). The sigmoidoscopy you had doesn’t go that far into the large bowel, so potentially the biopsies they took may not show anything, even though something somewhere is inflamed. I really hope you can get something arranged soon.

You also need to find out the extent of the Barrett’s oesophagus, as you should have this followed up at certain intervals which will depend on how large an area it covered (anything from annually to every 5 years I think from memory). Ask your gp if they or the hospital will be arranging your recall for that. Good luck op, I hope you can get some answers and a bit of relief soon💐

What is your weight and height now, OP?
What presciption medications do you use?

Like @Pepperedpickles I would suggest getting a 9 am cortisol blood test . I’ve got Addisons and my original symptoms were nausea , weight loss and fatigue

Hi yes this came back normal 400 i think

Have you tried putting everything into Chat GPT to see what it suggests? I think it would be worth a try and a chat with your GP about what it suggests.

I am still overweight which is why i think they are not worrying too much im now 190 pounds . I take lanzoprozole , ivabradine and fluoxitene.

This is still so awful i tried to go for a walk atound tesco yesterday and somehow this kicked off hours of pain and diahrea! Im sick of this now .

Something similar happened to a friend of mine. She dropped two stone in a year and was so weak, she had to walk with a stick.

She did the FODMAP diet. May be worth a look. https://www.gloshospitals.nhs.uk/media/documents/FODMAP_dietsheet_for_website.pdf

AFAIK, IBS can be triggered by stress and viral infections.

If you can stomach it, could you experiment with different types of foods that boost good bacteria in the gut: live yoghurt, Actimel, kefir, kimchi (absolutely stinks and very strong so may not be the right first thing to try), sauerkraut (less fierce than kimchi) kombucha drinks (these can be quite nice and gentle on the stomach). Find a couple that your body can tolerate and try to have some each day.

A sigmoidoscopy will only rule out UC if it's in that bit if the bowel. You need a colonoscopy to look at the rest of the colon to see if there is any IBD (UC) there.
Sadly you need to push for further tests.

UC by definition is continuous inflammation starting from the rectum. A sigmoidoscopy will always rule out UC. What it cannot rule out is the other main form of IBD, Crohn's disease, which tends to be patchy inflammation and is most commonly present in the terminal ileum. Colonoscopy is useful as it would show/rule out the most common variants of Crohn's disease present at TI. Sometimes other tests to look in small bowel are also needed.