Chronic undiagnosed illness affecting mental health

[ScottishStottie]

Im worried about my dp. Since mid december hes struggled with constant sever abdominal pain along with nausea and vomitting. This resulted in all of january off work and two 5 night hospital stays, because of dehydration and low potassium caused by the vomitting.

Hes a bit better now, can keep it at bay during the day to get to work but mornings nd evenings are still tough. No actual vomitting for a few weeks now but still constant severe nausea, which seems to be triggered instantly as soon as he tries to eat something. He has a consaltant appointment for this next week, diagnosis was never really a focus at the hospital stays, it was more to raise the stats so hes well enough to discharge. Bed spaces are on short supply.

My biggest worry now though is how its affecting him mentally. He told me last night that while it was at its worst in january, he seriously was considering suicide as it was never ending. He told me that its not that bad any more but that hes still low, but i worry that hes told me this to not worry me too much, as a sort of testing the waters telling me iykwim.

He also said that at his last gp appointment a couple of weeks ago, he tried to tell them about how its getting to him mentally, and the gp dismissed it and told him to try to manage his anxiety. So now he has no faith in raising this to get professional help.

Theres also the possibility now that the physical symptoms could he caused by the mental health, i think anyway. Whats leaving the doctors stumped is the fact that what they thought it was should have passed now, so they dont know why its still around. I just dont understand why they arent taking the mental health side of this more seriously, as it has the potential to solve all of the issues?

Could this be something we should push them to focus on or should we get them to rule out physical reasons first? Appointment next week is with a gastro consultant so im guessing this is more physical investigation.

If we look into the mental health side, what sort of treatments could we expect to be offered? In my head im imagining getting anti depressants or somthing, even as a test, if he takes something like that and the nausea eases then we know its likely not a physical cause?

Bumping...

It's difficult with GI symptoms as they can be the result of so many things and investigations can be invasive.

Can you do a kind of health audit? What does your DP eat, can you keep a diary of food and symptoms (loads of apps these days), get basic blood tests done, ensure he's doing at least some exercise. Can you afford private counselling? The NHS is so stretched. Has he tried basic stuff like probiotics?

He definitely must attend his gastro appointment with a completed food, pain, bowel and vomiting history. That will be the most important thing required so he needs to do it now.
He must ask about HPylori infection and have the test.
Also consider and google giardiasis. Has he been abroad recently?
Be prepared for suggestion of scan/ endoscopy/ stool samples.
I hope he gets a diagnosis and treatment soon.

Been trying to monitor food etc, but it seems to be more linked to time of day. So he'll take cereal bars/protein bars and bananas to eat during the day, and its fine. But as soon as he eats something in the evenings he'll feel sick. This is the same whether its a full meal (been making casseroles, soups etc to get lots of veg) or some toast.

Getting excerise is a difficult one because its leaving him so exhausted. He'll get home from work and try to eat something, then feel sick, have a bath for about an hour or more as it eases the sickness a bit, and then its time for bed. Weekend was spent sleeping mostly as he was floored from the week at work.

Private counselling is a possibility, and i think he should, but i think thats more a long term thing, i think that if he got some medication for this, even just as a short term thing, then we would see an easing of symptoms.

Blood tests etc all done at the hospital and not showing anything obvious. Also got a camera down the throat and took a biopsy which came back clear. Camera saw that everything was very inflamed but that was when he was still vomitting a lot so they werent too concerned about that.

We did try probiotics (the little yoghurts? Is there a different or more effective method?) But this was when he was still vomitting a lot so didnt really have much of an effect. Could try this again now though.

Hypylori was mentioned as being negative on hospital discharge letters so i guess this has been tested for.

I think because its being triggered by eating, they need to look at digestion issues, so i suppose camera up? Hes had the camera down the throat which didnt discover anything.

Has he been tested for Addison’s disease? Ask for a morning cortisol blood test. It’s very rare so unlikely but those symptoms were similar to the ones I had (including the depression etc) before I was diagnosed.

If he was to go for counselling and meditate daily and still there was no improvement I think the doctor would take it more seriously.
Is there something from his past he doesn't talk about to anyone ? Due to embarrassment, fear, worry, shame, guilt, then that could be the issue. That was what caused my anxiety and I also had digestive issues. Only he will know that.

Sorry your dp is so unwell op. It must be difficult for both of you.

Hard though it is, I think my instinct would be to wait until he sees the gastro consultant next week (and go in with him for support) and make sure he stresses how debilitating your dp is finding this - mentally and physically - and push for as many tests as possible - you have to be quite assertive nowadays , don't be fobbed off. Tell him about the evenings and the low mood too. I think there has been a lot in the press recently about the link between gut health and low mood.

Anti-depressants can cause nausea and vomiting etc when you first take them, so I would go down the medical exploration route first. Your dp will feel so much better with a proper diagnosis and a plan of action. The uncertainty must be very debilitating.

Ask if there is anything you can do to build up stomach flora in the meantime like probiotics. Keep a food diary this week and take it in?

The trouble with western health systems is that they are very compartmentalised. There's obviously something physically wrong if your dp has had two five night stays in hospital. When your stomach is off, the rest of you is bound to feel all out of kilter. But mental health is very important too.

Once you have a diagnosis, could your dp start doing a few things for himself towards changing his mood? Headspace or similar apps, gentle exercise, what is his diet like? Cut out all fizzy drinks and highly processed foods , cut down on caffeine, sugar, and white carbs, and start introducing lots more veg and fruit (if he doesn't eat them already)? Artificial sugars can cause some people horrible gut issues. Then maybe some holistic therapies like accupuncture, tai chi or yoga or similar? But I'd personally start with pushing for the medical diagnosis first.

Good luck

Sorry xpost, see you have already tried lots of the things suggested

I'm just a layperson but I've read a lot about the gut-brain connection. It really does seem as if:

happy brain happy gut

www.apa.org/monitor/2012/09/gut-feeling

Most of the body's serotonin - a mood stabiliser - is actually made in the digestive tract.

And I know that there have been reports of anti-depressants being used successfully to treat IBS. (Although it is also the case that anti-depressants can have nausea as a side effect.)

I hope you get some answers soon. I would certainly continue to encourage gentle exercise, which can in itself change the gut microbiome for the better and improve mood. I know it's difficult when you don't feel well. Maybe short walks or yoga? Also try probiotic food again.

Lastly, I wonder how your DP was feeling about his work before he got sick? If he felt uneasy and stressed about it and was pushing himself to go in, there may have come a point when his body decided to say 'enough!'

(Again, I'm not an expert but I do have someone in my life whose mental well-being most definitely affects his digestive system and vice versa.)

This makes me so angry. Feeling physically ill makes you feel like shit. Of course it does. It's obvious to anyone with 1/2 a brain cell, or an ounce of empathy!

But if you tell anyone it does, you get instantly dismissed as anxiety or depressed. Which it's not.

I'd tone down the mental side, in any future discussions, with gp or consultant. And up the mention of the physical pain.

I'd also take someone with me. Go with him op. I find that every health professional takes more notice. If the patient sits and says I'm in pain, the gp says yeah yeah. If the husband says 'I'm very concerned about the amount of pain my wife is in', it seems to have a better effect. If someone if advocating for you. Sad, but true.

I know someone who was being seriously investigated for gastric issues and I mean MRI, colonoscopy and all sorts. They were worried it might be something entirely different as it had an awful affect on mental health too. To and from the doctors for ages and getting nowhere then out of the blue had a particularly bad episode of vomiting and pain, was taken to hospital where they said it might be the appendix. Tests showed no inflammation so they gave the option of antibiotics or taking it out anyway as at least they’d be able to exclude it. Has been absolutely fine since the op with no recurrence of the issues. The hospital told them there is no such thing as a grumbling appendix so inexplicably it seems to have cured a mystery issue.

Ive spoken to him about alternative therapy, and hes open to anything so might look into getting acupuncture or something like that to see if it helps the mental side of things.

Defo going to the consultant appointment, but unfortunately i cant go with him. We work for the same company so us both needing a day off is difficult at short notice. But he is going to put in pressure to investigate.

Thank you for the support. It just feels like we are banging our heads against the wall at times.

Could Try going gluten freest can help undiagnosed gi problems when tests come back negative or inflamed with no none cause, it resolved mine and daughters We didn’t get coeliac diagnosis but are definitely allergic to wheat.

Honestly, please avoid saying or implying to him that you believe his physical symptoms are a result of mental health issues.

Your posts suggest that he became ill, doctors couldn’t find the cause and then he became severely depressed. This is a very normal response to being so ill and not knowing why. It’s absolutely devastating because if they can’t find the cause you feel there’s no hope of ever getting better. I’ve been in the same boat for years and years (different symptoms, same result) and it leaves you feeling completely devoid of hope. And if a health professional decides that it’s down to your mental health, you’ll have an absolutely enormous battle trying to get them to actually investigate what’s wrong with you ever again, IME.

If he were seriously struggling with his mental health before he was ill, that would be different. But I’m not surprised he’s struggling now. I’ve often felt that if I didn’t have my children and DH I’d just want to die because the thought of living like this for decades more is unbearable. I am not depressed though, I’ve just had enough of feeling so ill.

As you can see from this post, there are hundreds of conditions that could cause the symptoms he’s having - some are rare and to most doctors this means impossible, but rare conditions happen to someone.

Mental health support for dealing with chronic illness - great

Assuming it’s MH related before completing the necessary diagnostic tests - very unwise

I am worried that the mental health is prolonging it, but i havent said that to dp. He said to me in the same convo that he felt suicidal that he worried it was all in his head, but hes not mentioned that again. But yes good point about avoiding mentioning it to him, i can see how devastating it would be if hes struggling to get medical people to take it seriously, and then he thinks i dont believe him either.

He was fine mentally before he got unwell so something physical has caused it, im just worried that feeling so low is prolonging it and no one medical seems to be dealing with that.

But yes i suppose thats for us to deal with for now anyway, they need to continue to look for a cause.

Will suggest cutting gluten, dont think hes been having much anyway, food generally has been pretty minimal so worried about cutting more out.

If he has migraines ever, it could be a type of migraine.
Also, while it might seem obvious, by now he could also be deficient in vitamins (esp b vitamins always seem to affect my mood a lot) so a good b vit complex might help a bit

Hes never really suffered from migraines so dont think its connected with that. I have got multi vitamins that he has twice a day, im aware with such a limited minimal diet that this is a worry. Might get another one for just b vitamins though, thank for the tip!

OP I had very similar symptoms for a long time. I have Crohn's so it was put down to that for ages.
I kept pestering and was sent for a 'radioactive' gastri emptying study and was diagnosed with gastroperisis - it may be worth asking for this to be checked?
It is always worse at the end of the day, and it feels horrible.
Wishing you son the best of luck

Originaltaste, thats what i think it is. I think its connected to how his digestion system is (or isnt...) Working.

Dp is going to go into the consultant appointment pushing for digestive investigation so hopefuly this is what they'll do to look into it.

Are you truely sympathetic OP?
I'm not sure you are!

This sounds like nothing mental health at all! He sounds like a man worn down by physical symptoms.

Has any health professional suggested cutting everything out of his diet? An 'elimination diet'?

You start with water. Then add one thing back in?

"A small number of people find that certain foods irritate their bladders e.g. tomatoes, citric fruits, spicy foods and foods containing artificial sweeteners. If you are unsure as to which drinks or foods irritate your bladder, it is worth trying a two week “elimination diet” followed by a “food challenge”.
This involves avoiding the bladder irritants listed in this leaflet for two weeks, and keeping a daily diary to see if there is an improvement in your symptoms. After two weeks, re-introduce one item at a time. If you do not experience any deterioration in your symptoms gradually re-introduce another item from the list. Allow at least three days between each addition. This will enable you to see which drink of foodstuff may be causing your bladder problems.
Discovering which drinks or foodstuffs make your bladder symptoms worse can be a lengthy process. This leaflet contains information about the most commonly known bladder irritants but it may be that your bladder symptoms are caused by other drink / food products. Keeping a drink and food diary for one month may help you to find your individual trigger."

Posting partly to place mark.

I am suffering with similar (minus the vomiting - but this is probably because I’m emetophobic and have been able to mentally stop myself from vomiting for 30 years or so). I wake up feeling acceptable, can get through the day and can usually eat snacks and a decent lunch but I cannot eat in the evenings or late afternoon unless it’s the tiniest amount. Any size of meal makes me feel horribly nauseous, causes abdominal pain and severe bloating. It’s really getting me down and I ousted a thread about it the other day (not worth searching for as barely any responses). I am constantly exhausted and very very down. It’s horrible living like this. If you get to the bottom of what is up with your husband please update this post because I’m desperate. I’m had a colonoscopy which was clear and take some excellent probiotics and have cut out all food that causes me issues when eaten at other times of the day but nothing fixes the evening problem or the constant exhaustion.

Good luck OP.

It truly is debilitating, both physically and mentally. Absolutely push for the tests and see where it leads.

All the best

Definitely push for more physical tests - I would have thought this is very unlikely to be mental in origin. If you have the money/private insurance would go private, NHS can be very slow if not on an urgent referral. I've just had an MRI and its a 4 month wait for results.

If in England you can self-refer for counselling online to do in conjunction but please get help for his physical symptoms asap. My DH's boss had similar and it was stomach cancer, it's very probably something much more minor and fixable but the sooner issue is found the better. Not surprised he is depressed with that.

I am sympathetic and i really feel for him, but not going to lie, its been difficult for me as well. I feel like the strain is having an affect on me as well which im trying to cover as i dont want dp to feel even worse about it all.

Work, all the housework (before dp probably did more than me), as well as worrying about dp is tough, but i know that actually going through it is even worse so dont want to make it about me.

Going to try avoiding food altogether in the evenings, we have meal replacement shakes in so will try that instead, should give an indication as to whether its the solid food digestion thats causing the issue.