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

So I’ve had another “episode” and gynae were called again despite my DH speaking to PALS and the head of the nursing team and asking for gastro to be sent instead as they confirmed that my coeliac test has come back high and likely to be the case. Gynae consultant kept lifting my arm up and dropping it onto the side of the hospital bed hurting me whilst I was screaming in pain with my stomach and tutting at me, the nurse put a painkiller up my bottom (diclofenec I think?)

after it had all calmed down and my stomach had stopped the twisting/spasming my DH said he is making a formal complaint against the gynae consultant as I was being re cannulated (accidentally pulled it out in the night) and given oxygen as my sats dropped to 88 and my blood pressure dropped to 87/55 and heart rate was 146, he was telling DH that I was lying abouts this and coeliac does not appear in attacks which I’ve since learned is not true and can come in extreme bouts of pain. He asked DH if I have stopped taking my antidepressants by this point my DH walked away and back to me in my bed whilst they put cold packs on my cheeks and chest to cool me down. I’m now petrified that this dr thinks I’m making it up and I just want to get out of here now and home to my babies despite whatever this diagnosis is, I don’t want to be at this hospital any more 😢

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

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.

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.

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 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.

Agreed: they are missing something really important. Not for me to say what.

I was thinking same, unlikely to be linked to coeliac, except where have come fully off gluten for a period of several months, and then ingested a lot of gluten.

OP I would query the coeliac diagnosis, that test usually takes around 2 weeks to come back due to the nature of the test and equipment only being in specific locations. We have to schedule my daughters blood tests 3 weeks before she sees her paediatrician to ensure he has results available, and even then there have been times where he still doesn't have it. I think you only had the blood test maybe 3 days ago? So possibly a mix up.

@Bushmillsbabei think the test was called an IGA test? Does that sound right?

The IGA test can be back in just a few days if you’re an inpatient.

The IgA blood test can be back within 24 hours. If you read the post the medics have said the pain is not consistent with being caused by coeliac (hence them
not calling a gastroenterologist when she had a flare up) but the OP says she’s read it can cause the symptoms she’s experiencing.

Clearly there is much much more to this than is being shared on MN (and that’s fine).

Given the swelling you’ve mentioned along with the severe abdominal attacks and the BP/heart rate drops, it might be worth asking whether something like mast cell activation syndrome (MCAS) or some form of angioedema has been considered. Those can cause episodic abdominal pain plus swelling and can be hard to pick up on standard scans and blood tests.

Everyone consults Dr Google these days! Not necessarily beneficially.

Iga is an immunoglobin that protects mucousy places. A very high iga can mean your body is fighting an infection in any of the places that involve mucous, so sinus, throat, lungs and gut. It can be raised with celiac, but also with Crohns, IBD or liver issues.

Yep, I pity the doctors having to deal with patients who think they know more than them because their cousins hairdressers neighbour had similar symptoms and it turned out to be parvovirus

IGA isn't specific to coeliac, it just indicates a level of inflammation/infection in the digestive tract or other mucous areas.

There is a more specific IGA TTG for coeliac but this isn't completely reliable. EMA is the most specific test for coeliac

TTG is an IgA antibody - the coeliac test that’s usually requested is TTG-IgA

I've just read your post of 18.46 this evening and am horrified and appalled at your treatment. I'm so sorry that you're going through this.

Is there another hospital in the area you can transfer to? It doesn't sound like you are getting on with the gynae consultant there and if you are getting no joy then it's fresh eyes?

We have a Dr friend who himself uses Dr Google whilst at work 😳

Presumably, they have medical training as well

Yeah true, suppose it was low then. But still having severe episodes of pain and now high iga so further investigations are indicated.

Smart! I had to have a colonoscopy when DD was a baby and didn't think of those, I ended up spreading out one of her nappies in my pants!

He’s fully qualified but still uses Google, To be honest when I broke my arm I complained to him that it still hurt like hell after a year, he told me that can be normal. After 18 months of pain and taking painkillers constantly I visited my own Dr. He was quite dismissive but sent me for an X-ray for my peace of mind. Low and behold it was still broken 🤦‍♀️ . He called me the next day and apologised profusely. I’d been kicked by my daughters horse, ouchy 🥴