[James Malloch]

Obviously very difficult to do much online, but my dad has been ill for the past 8 weeks.

It started when he had his covid and flu jab together. He got ill and has been rough ever since (jabs may obviously just be a coincidence).

He is 72 and pretty fit but has lost a stone in weight in the last 5 weeks (12.5 to 11.5 stone). He cant stomach food (managed 2 roast potatoes on Christmas Day, but is mainly eating yoghurt/liquids and prunes.

He also gets pain in his side from lying down so he is getting up about 1am and sitting on the sofa as being upright seems to get rid of the pain.

He has had loads of blood tests, chest xray, and most recently an ultrasound checking organs. Everything is coming up fine other than the ultrasound suggested there was a lot more gas in his system than usual.

His GP has said to give it a few weeks to see if it sorts itself out which seems like a crazy plan of action to me when nothing has improved for so long.

He has just started going for a few runs and swing again which feel fine, but his mood is very low and he is clearly in a lot of discomfort.

He is the stoic, won’t phone to complain kind of person.

I don't know all the symptoms but does anything jump our from the pain when lying, complete loss of appetite, feeling sick if trying to eat, pain in side from lying and probably build up of gas?

I think he needs to keep pressing the GP to try and work out what’s up….

I assume anyone would need more information than this, but I thought I’d ask just in case!

Edit- we wondered about sending probiotic tablets to try get his gut health up, in case it is something to do with digestion. But no idea if that’s worth it.

[slab_happy]

Obligatory disclaimer that I am not a doctor, but it's ringing possible bells for something like SIBO, maybe? Or IBS, or Crohn's, or any of that bunch of GI tract nasties.

e.g. https://www.mayoclinic.org/diseases-conditions/small-intestinal-bacterial-overgrowth/symptoms-causes/syc-20370168

Has he been seen by a gastroenterologist?

Someone dropping weight that fast and being in pain that's stopping him from sleeping doesn't seem like "give it a few weeks and see if it goes away" territory to me (unless it seems to be getting better on its own, which you don't mention).

[spidermonkey09]

The only thing I would say is that if he's a stoic is it possible that he hasn't explained to the GP the extent or severity? I have older relatives who are dreadful for this.

[dunnyg]

As someone who took a while to get something abdominal diagnosed, keep kicking off. Everyone is too busy and the only person you can rely to fight for you is you. Get more things tested etc etc.. Worth remembering diagnosis doesn't mean you will instantly be treated!

Good luck!

[stone]

I've been told by hospital doctors to bring my other half along to hospital appointments before. I've asked friends who are doctors why that is. They've told me that, more often than not, it is the partner who provides vital information when they are taking a history. And it is the partner who is in a state of mind to then better understand what the doctor is saying.

A GP has to first get a handle as to what is going on before ever getting to the stage of having such hospital appointments. I don't know how normal it is to take someone else with you to a GP appointment, but my guess is that the GP would welcome it for just the same reasons as with hospital doctors (I'm happy to be corrected).

My n=1 personal experience is that it can be crucial to be very persistent to get a diagnosis.

[SA Chris]

Based on my recent experience, sounds like it could possibly be https://www.nhs.uk/conditions/gastroparesis/ which is what the doctors think I have.

I was given metaclopraminde for it, which seems to help, but still no appetite. Push for as much tests as you can get; there is the possibility it could be something nasty..

[slab_happy]

I've been told by hospital doctors to bring my other half along to hospital appointments before. I've asked friends who are doctors why that is. They've told me that, more often than not, it is the partner who provides vital information when they are taking a history. And it is the partner who is in a state of mind to then better understand what the doctor is saying.

I have various friends with chronic medical conditions (which often took a while to get a correct diagnosis) who also recommend bringing a partner/friend/relative along to appointments, for a different reason -- unfortunately, certain doctors may be prone to dismiss symptoms which are hard to measure (like pain or loss of appetite) if they don't fit into an obvious diagnosis, and just write them off as stress or hypochondria or aging or whatever. 

For a few, if you persist in having something they can't easily diagnose and fix, that's a wilful challenge to their authority, and pushing for more testing can be a quick way to get labelled as a Problem Patient.

Having someone who is not the patient along to reiterate the problem and keep pushing can be a way to get around that.

[seankenny]

I’m not at all anti-vax but vaccine injury definitely seems to be a thing that leads to long covid type symptoms (which is why I’ve heard of it). Your dad’s symptoms don’t sound like typical long covid/vaccine injury though so perhaps it’s just a coincidence?

My experience is that yes, you will have to push doctors for a diagnosis even when it seems quite serious and life-affecting, and some of them can be quite unpleasant in the process. Remember, a doctor isn’t just for treating ill health, but also for perpetuating existing systems of social inequality and hierarchy!

Anyhow, rant over, someone accompanying your dad would probably be a very good idea.

[andy popp]

I'm only repeating what others have said, but having twice been the partner of someone struggling to get a diagnosis and then eventually hearing bad news, I can't over emphasise the importance of someone being there with your dad at any meeting with a doctor, whenever possible.

[Duma]

Remember, a doctor isn’t just for treating ill health, but also for perpetuating existing systems of social inequality and hierarchy!

what?

[seankenny]

Remember, a doctor isn’t just for treating ill health, but also for perpetuating existing systems of social inequality and hierarchy!

what?

General poorer outcomes for women, ethnic minorities, lower income people. Diseases which mostly affect women get much worse treatment (I know, I have one!). Women’s pain getting taken less seriously or symptoms being psychologised rather than treated. Sometimes presenting a doctor with a thing they don’t understand is dangerous for the patient, as it upsets the authority and hence social standing of the doctor.

If this sounds weird or extreme then you are lucky, bask in it.

[nik at work]

I’m not disagreeing with your poorer outcomes statement, but to summary that as:
“Doctors are there to perpetuate inequality”
Is perhaps a bit of a leap?

[seankenny]

All this stuff is well known and shown in research; if they were entirely about evidence and patient health then they’d take it on board, surely? See also the sorry history of post viral illness, which is also not particularly evidence based, and pits patient outcomes against medical preference.

It’s worth highlighting the difference between their intention (which isn’t this) and their overall role (which might be, and perhaps because of incentives whose setting is outside the purview of individual doctors).

Anyhow, this is derailing James’ original and urgent question.

[spidermonkey09]

I'm sure lots of us know doctors in a personal capacity. The idea that the vast majority don't take poorer outcomes seriously is really wrong. (edited to be less confrontational!) I know you've had a different experience Sean and I fully respect that but I dont think it's fair to tar all with the same brush. Agree it's derailing the thread but I thought that was important to say.

[seankenny]

There are plenty of people who would say exactly the same about the police as SM says about doctors. But this forum is probably less likely to be used by people of a similar social class and outlook to police officers, and more likely to be sceptical of police work (whilst agreeing that many individual police officers are dedicated to their jobs.) “People like us” is a powerful blinder.

I’m not tarring all with the same brush, but in my view and experience poor behaviour is way more common than you’d expect. It’s also a bit more than personal behaviour, institutional norms surely play a role and also general political and social settings are important. Note also that I made a distinction between individual intention and social role.

I would obviously have written exactly what you wrote a few years ago, but now I wouldn’t. White, healthy(ish), middle class, educated men have traditionally in our societies been the slowest to pick up on systemic injustice. Intellectually we all know this, but the prospect of very poor treatment from the people tasked with our care is scary, and it’s easy to retreat to comfort zones. This is not just personal experience but very widely shared amongst some patient groups. We just don’t tell others that often because it’s not worth our effort. (You don’t believe us anyhow!  ) But… UKB is a pretty respectful forum so it’s all cool.

[spidermonkey09]

The police comparison did actually occur to me as I was writing the post, and I take the point. I think I would write the same sentence about police; I think the vast majority of police are decent people who take their responsibilities seriously. I would also say that, broadly speaking, there are more problems with the police force in the UK (specifically the Met, really) than there are with the medical profession. Maybe this is unconscious bias, I don't know.

In both examples structural /institutional issues are the real problem rather than individuals. Bad actors are enabled by poor systems. At root, a lot of these issues are caused by decades of underfunding. Obviously that's not an excuse in the slightest for poor behaviour experienced by anyone at the hands of police or doctors.

I dont actually think we disagree all that much re social injustice and I understand why your tone is perhaps sharper than mine would be given your experience. I just see first hand how hard doctors work and the shit they have to deal with so thought I would reply. 

 

[seankenny]

Fwiw two close relatives had cancer and survived thanks to the skills of their doctors, so I’m pretty grateful for them in that respect. I also visited a covid ward (not as a patient) in 2020 so saw how professional the staff there were under intense pressure and real risk to themselves.

My own view is that underfunding is very serious but that these issues existed way before 2010, and in other much better funded healthcare systems.

Taking the police as an example, I’m sure the officers in the Rochdale child abuse scandal took their duties towards the victims of crime extremely seriously. But if you read the Casey report it shows that those officers simply did not consider the girls in the case as victims. By excluding them from the “circle of victims” the police officers could act professionally and treat the girls terribly with no dissonance on their part. Obviously this is wrong to those of us on the outside, but it went on for a long time so it perhaps wasn’t as clear to those caught up in it (apart from the pesky local women’s group mentioned in the report, but we were talking about entrenched hierarchies).

I think some doctors want the best for their patients whilst simultaneously excluding some people from the circle of patients. Minimising pain or psychologising physical illness effectively do just this, allowing the doctor to treat “real” patients and ignore others quite easily. The new NICE guidelines on ME quite clearly tell doctors that some of their patients may have previously experienced disbelief and prejudice (their exact words, not mine) from healthcare professionals. Think about that for a moment - prejudice against someone with a disease. It’s as logical as prejudice over skin colour. But if you pretend the disease doesn’t exist you can exclude a difficult case from being a patient and go back to treating real patients like the good person one surely is. And no one’s authority is thrown into question or doubt.

As for prevalence, I am not confident to say whether these issues are more or less than in the police, or even how one would go about measuring this.

Also - sorry James.

[stone]

I think some doctors want the best for their patients whilst simultaneously excluding some people from the circle of patients. Minimising pain or psychologising physical illness effectively do just this, allowing the doctor to treat “real” patients and ignore others quite easily.

I can only imagine how tough it must be to be suffering from a severe illness that falls outside what the medical profession adequately comprehends. I realise that in many such cases, the disease has no more psychological component than do typical well-understood diseases.

However, perhaps the most stigmatised patients, who are most in need of more solidarity, are those who are incapacitated by actual psychosomatic disease. In some such cases, they are as severely ill as people with extreme physical or "classic" mental illness. This was brought home to me by this Radio interview with someone in that field of medicine https://www.bbc.co.uk/programmes/m000112j

[stone]

General poorer outcomes for women, ethnic minorities, lower income people.

All this stuff is well known and shown in research; if they were entirely about evidence and patient health then they’d take it on board, surely?

Like you say, this is a huge problem. I heard about an initiative to try and improve GI cancer outcomes in South Yorkshire. Apparently less privileged people go to the doctors far less often. They attend pharmacies at least as often as privileged people though. The initiative was to analyse sales by pharmacists to alert when someone was buying over-the-counter medicines in a pattern that indicated they might have GI cancer. The pharmacist could then speak to the patient about it.

The GI cancer specialist doctor who set this up and who was talking about it seemed to view the whole situation as being an issue for the medical profession to sort itself out over. Issues such as what discouraged less privileged people from accessing their rightful healthcare provision seemed to be a central consideration for him at least.

[James Malloch]

Thank you for all of the advice, and it’s been interesting reading the tangential stuff too!

I’ve sent on some things to him over the last few days and will give him a call later too. I was about to message my step-mum and she got in there first.

She managed to persuade him to book into the GP sooner and has managed to get an urgent (within 2 weeks) referral for a gastrointestinal specialist appointment.

A lot of things in here seem to have been along those lines, so hopefully it’s something they can diagnose quickly and he can get back to full health!

Thanks again for all of the responses, and hopefully I can update with a positive outcome soon!

[PeteHukb]

Hi James.
I'm an anaesthetic/intensive care doctor, so not at all a specialist in this area, and also in ICU we tend to see the worst-case scenarios rather than more common outcomes/presentations, so my view on things may be somewhat skewed.

It sounds like you and your step-mum have taken some really sensible steps in persuading him to push for further investigations, and I do think that the 2-week referral is appropriate at this stage.

For what it's worth, 8 weeks is not that long in terms of your body's recovery from a nasty bout of anything... Depending on the nature of his initial illness it may have been reasonable for the GP to give it a bit longer to see if it settled. (For example, after severe gastroenteritis it is not uncommon to get a degree of malabsorption for a few weeks which can give similar symptoms to what your dad has had.) Having said that, 8-12 weeks is definitely a bit of a turning point for symptoms being defined as "chronic" (ie longer lasting), and it's harder to put continued weight loss down to something that happened a couple of months ago.

I don't wish to alarm you, and the combination of symptoms your dad has could be due to any of a very long list of diseases, but the reason he's been referred within a 2-week window is because some of his symptoms can be signs of cancer. In fact - and this is for everyone else - given that one in three of us will get cancer at some point in our lives, if anyone over 60 develops new/unusual symptoms which last more than 4-6 weeks, cancer will almost often be somewhere near the top of the list of possibilities. I've just turned 40 and am increasingly considering myself as an "older adult" from this point of view, not least because my cousin recently got diagnosed (and successfully treated) with kidney cancer after a single episode of blood in his urine, having never in his life had that before, and being fit as a fiddle.

Cancer is a scary word, but that shouldn't prevent us from talking about it and raising awareness, because awareness genuinely saves lives.

I really hope your dad gets the answers and treatment he needs. Good luck and well done for advocating for him.

[slab_happy]

She managed to persuade him to book into the GP sooner and has managed to get an urgent (within 2 weeks) referral for a gastrointestinal specialist appointment.

Brilliant, that's great to hear! Hopefully he gets a diagnosis soon and it's something easily fixable -- and if not, I hope it's at least something manageable.

I've got a friend who's had ulcerative colitis (one of the cluster of GI nasties like IBS and Crohn's and so forth) for many years, and it's not a bundle of laughs to have, but it can be treated and managed and he can get on with his life fine.

[James Malloch]

Hi James.
I'm an anaesthetic/intensive care doctor, so not at all a specialist in this area, and also in ICU we tend to see the worst-case scenarios rather than more common outcomes/presentations, so my view on things may be somewhat skewed.

It sounds like you and your step-mum have taken some really sensible steps in persuading him to push for further investigations, and I do think that the 2-week referral is appropriate at this stage.

For what it's worth, 8 weeks is not that long in terms of your body's recovery from a nasty bout of anything... Depending on the nature of his initial illness it may have been reasonable for the GP to give it a bit longer to see if it settled. (For example, after severe gastroenteritis it is not uncommon to get a degree of malabsorption for a few weeks which can give similar symptoms to what your dad has had.) Having said that, 8-12 weeks is definitely a bit of a turning point for symptoms being defined as "chronic" (ie longer lasting), and it's harder to put continued weight loss down to something that happened a couple of months ago.

I don't wish to alarm you, and the combination of symptoms your dad has could be due to any of a very long list of diseases, but the reason he's been referred within a 2-week window is because some of his symptoms can be signs of cancer. In fact - and this is for everyone else - given that one in three of us will get cancer at some point in our lives, if anyone over 60 develops new/unusual symptoms which last more than 4-6 weeks, cancer will almost often be somewhere near the top of the list of possibilities. I've just turned 40 and am increasingly considering myself as an "older adult" from this point of view, not least because my cousin recently got diagnosed (and successfully treated) with kidney cancer after a single episode of blood in his urine, having never in his life had that before, and being fit as a fiddle.

Cancer is a scary word, but that shouldn't prevent us from talking about it and raising awareness, because awareness genuinely saves lives.

I really hope your dad gets the answers and treatment he needs. Good luck and well done for advocating for him.

Thanks for the post, Pete.

My dad mentioned it was a cancer referral after i posted, i hadn’t thought about that as an option before then (I’m a massive optimist and probably a bit head in the sand). You’re right that it’s good to talk about it though - and it was useful reading your post for more context.

Just had a good cry and I’ll call him tomorrow. Hopefully it’s nothing that serious…

[SA Chris]

I don't wish to alarm you, and the combination of symptoms your dad has could be due to any of a very long list of diseases, but the reason he's been referred within a 2-week window is because some of his symptoms can be signs of cancer. In fact - and this is for everyone else - given that one in three of us will get cancer at some point in our lives, if anyone over 60 develops new/unusual symptoms which last more than 4-6 weeks, cancer will almost often be somewhere near the top of the list of possibilities. I've just turned 40 and am increasingly considering myself as an "older adult" from this point of view, not least because my cousin recently got diagnosed (and successfully treated) with kidney cancer after a single episode of blood in his urine, having never in his life had that before, and being fit as a fiddle.

Cancer is a scary word, but that shouldn't prevent us from talking about it and raising awareness, because awareness genuinely saves lives.

A timely post. As per the "one for the runners" post a while back about my sudden weight loss, looks like it might not be the gastroparesis the doc initially though. Had a CT scan which has shown a small lesion on my pancreas. Awaiting further  appointments to see what the next steps are. Can confirm the advocacy bit - I had to push for the scan and if my brother hadn't died of cancer in his GI system I might not have got one. Anything unusual - get yourself checked. And do your poo on a stick test when it arrives. I'm nearly 55.

Anyone with any knowledge on what to expect, be great to hear.

(Apologies for the hijack James, but it is kind of relevant, good your dad is getting the attention he needs).

[mrjonathanr]

I hope this comes back with less worrying results.
Good luck both.