What’s wrong with me, hospital clueless

You're saying what they're saying though so how is that fobbing her off?

To be fair to them, they dont know whats wrong because nothing has been identified.

God op you’ve been through hell. It must be so frustrating. I have both coeliac and bowel disease (colitis) and I don’t recognise that level of pain at all! It’s not like you’ll have been eating much to set off an ‘attack’ anyway and I’m concerned they’re fobbing you off. I appreciate different people may experience different symptoms but in my peer support groups I’ve not heard of people being in such agony

You’re being treated appallingly, if your vital signs are so unstable during these episodes there is clearly something wrong. Just because they don’t know what it is they are making you out to be a liar. I’d be furious and I’m very glad your DH is advocating so strongly for you.

I have not read every single comment, so this may have been suggested already and I’m sure somebody will comment to say that this suggestion is overkill.

Can you get your DH to ask for the Martha rule point of contact? You’ve already raised it with PALS so I don’t see you’ve got anything to lose. I’m sure they will soon tell you if you are asking in the wrong place.
https://www.england.nhs.uk/patient-safety/marthas-rule/
I’m not entirely sure that your case falls within their remit in terms of deterioration levels , however it may make the hospital listen and the point of contact may be able to help you get a review with gastro?.

AI conditions are also a bit of a minefield to treat and diagnose.

I hope you can get this resolved soon.

Can you go private OP? For tests, obviously not for A+E

I hadnt even thought about pads, god knows why, thats a good idea

Another regular conoloscopee here. I know the feeling of "accidents" on the way to the hospital. I now use adult incontinence pants (Aldi do great ones) for that journey, and for the duration of the prep too, just in case! They are the absolute business, no worries about ahem, well you know yourself.

Yup. You have to literally live in your toilet. Ive had about 3, it might be 4.

I get terrible anxiety about the build up and also the journey to the hospital and 'accidents'.

@likelysuspect the prep is so horrendous and time consuming I can’t imagine doing that on a ward.

The other thing about flares of diverticulitis is that I was told that these will happen from time to time. Obviously look after your bowel health but they're not going to do anything about it. I suppose perhaps in very very severe cases they might operate, but I was in hospital for about 4 days, might have been more and once the flare went down and the pain went, it was just to be managed throughout my life, given a leaflet about a white diet when its bad and that was that.

This isnt particularly unusual to be honest, different clinicians come on at different times and take a different view, plus the other pressing needs of the department.

You mentioned you were diagnosed with diverticulitis hows that been since the diagnosis? I have had awful attacks of this in the past, I couldn't move with the pain.

OP hasn't confirmed if the fecal calprotectin test was high. If it wasn't, high then it's less likely to be a flare/exacerbation of diverticulitis.

Gosh, they prepped you for a colonoscopy and then changed their mind at the 11th hour? I’d be complaining about that as well. Awful.

If diverticulitis was present two years ago this could have developed further within two years. I would ask them directly if the pain could be as a result of this previous diagnosis and are they 100% certain it has not caused more extensive bowel disease? This could only accurately be diagnosed through a colonoscopy. Two years is a long time in my experience.

Sorry what a nightmare for you.

I am wondering if you are having stomach migraines - the vomiting, the pain. My daughter gets these unfortunately.

Also what was the last thing you ate before the pain? I am wondering if you do have Mcas and you ate something high in histamine. Leftovers in fridge are higher in histamine than fresh foods, these foods are naturally high in histamine:

Key High-Histamine Foods to Avoid/Limit

• Fermented and Aged Products: Aged cheeses (parmesan, blue cheese), sauerkraut, soy sauce, miso, vinegar.
• Alcohol: Red wine, champagne, and beer are high in histamine and can trigger release.
• Meat and Fish: Cured, smoked, or canned meat/fish (salami, bacon, ham, sardines, mackerel, tuna).
• Vegetables: Tomatoes, eggplant (aubergine), spinach, and mushrooms.
• Fruits: Citrus fruits (oranges, lemons), strawberries, papaya, and bananas.
• Other: Chocolate, cocoa, nuts (especially peanuts), and processed foods containing preservatives/additives.

I was about to say this too. My daughter just had a blood test Diamine Oxidase Activity which tests for histamine intolerance possible mast cell activation syndrome

1. Keep the photos and ensure they are dated. Take photos regularly, they speak 1000 words.
2. Keep diary of symptoms and track severity in terms of 1-5.
3. Request medical notes on discharge.
4. Try to have your husband there as he will be able to take in more right now than you.
5. Ask questions clearly they don't know what is going on but always remember you are living with this and you must be listened to and heard.

@elm26 I hope you get some answers soon. Please stand your ground and refuse discharge until there are some answers or you are stable on less pain relief than now.

Please make it very clear now that you find the assertion that the pain is imaginary 100% offensive.

He said he was told it was due to his clopidogral (sp). I don't believe that for a second

I know, it is ridiculous as it is such an easy test to do and so many gps miss it. People suffer for years with indigestion and ulcers and a simple test could solve it.

Have the doctors who are currently treating you asked much about your autoimmune issues. Many autoimmune disorders are multi systemic and mimic other diseases. My Dad had polyarteritis nodosa, a form of vasculitis and it manifested in a lot of diverse ways. It took a long time for the medical team to join up the dots. I think you have had a lot of investigations but the attitude towards you in not fully believing you is unacceptable.

So have you been told what the emergency operation the other night was for? Sorry if I've missed it.

Thanks for posting this this is my dad's symptoms not sure if they've tested for it