What’s wrong with me, hospital clueless

[elm26]

Yesterday at 1pm, I put my 6 month old on the rug with his toys and went for a wee.

As I was walking back I had a sudden severe pain in my right side radiating into my lower back and up to my shoulder, I was in agony.

I called DH who was luckily only on a job 15 mins away, he came straight home and took one look at me and called ambulance, I was shouting out in pain they gave me gas and air and morphine.

I had an emergency CT when dye last night and also have a catheter as lost the ability to wee. Nothing showed on CT, they got me settled on morphine and today I’ve had a transvaginal scan which shows ovaries and womb look normal.

Gynae can’t find a reason so they’ve stopped painkillers and just giving me paracetamol but somethings wrong I feel like somebody’s twisting my insides. The gynae consultant was horrible and said the surgical team will come see me if they think it’s worth it?? So I’m waiting for that if they come.

I’m in so much pain and genuinely scared they’ll send me home not knowing what is wrong with me.

Has anyone has anything similar?

I'd ask them for a referral to Addenbrooks if they can't diagnose you. My dad had an undiagnosed autoimmune illness and was really ill as an inpatient for six months! Hospital had no clue what it was and I eventually pushed for a referral to Addenbrooks.

Lupus and vasculitis service | CUH

“Their doctors don’t bother to investigate properly” - this is not true though is it. I feel
for the op as she is clearly in pain and scared but she had a CT scan, two ultrasound scans and blood tests that showed no cause for her pain. She then had a collapse and further pain so had a laparoscopy which also showed no cause for her pain. She’s had a colonoscopy two years ago which showed diverticulitis (IBS is not diagnosed by colonoscopy) and she’s had stool sent for calprotectin which has presumably come back normal which is why they are not performing a colonoscopy, because this invasive test is not indicated.

This woman has had a lot of investigations and yet people are still running with this idea she’s not being taken seriously. Sometimes we need to live with uncertainty and unknowns.

My daughter has had a similar experience, they called it angioedema, but don’t know why it happens. They’ve advised chewing a couple of ceterizine tablets if and when it happens again (antihistamines). She’s unrecognisable when it does happen.

No, I doubt it.

H pylori causes stomach ulcers if it is not treated. I am not a doctor, but from what I have read about it, you are unlikely to have it so I was surprised that the pp said that their relative had the same symptoms as you, but I suppose that it can if it has been left untreated for a long time.

Are you having any of the following:

Serious Complications (Seek Medical Care)
If H. pylori leads to a peptic ulcer or gastritis, symptoms can escalate, requiring immediate medical attention:
Cleveland Clinic +3

• Severe, Sharp Stomach Pain: Intense pain that does not go away.
• Bloody or Black Stools: Sign of internal bleeding.
• Vomiting Blood: Or vomiting material that looks like coffee grounds.
• Anemia and Fatigue: Extreme tiredness caused by internal bleeding.

This popped into my head too when I read your latest updates OP.
I hope you find some answers soon

https://my.clevelandclinic.org/health/diseases/mast-cell-activation-syndrome

'Their doctors' was referring to whoever is deciding that some women just have extreme pain that cannot be diagnosed, the OP herself has had plenty of investigations I agree (though she had to go home and collapse in pain before they would do anything more), but I still think refusing to do a colonoscopy when she is having such extreme acute symptoms just because she had one two years ago (which showed an issue that can develop complications) is not great.

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

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

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.

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

@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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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

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'.

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.