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?

While mental health can sometimes be a cause of things like stomach ache and nausea, I wouldn’t think it very likely to cause vomiting severe enough to need 2 x 5 nights hospital stays.

I think most people would feel very low if they were feeling or being sick constantly. It sounds awful.

Has he already been tested for Coeliac? If not he should carry on eating as he usually does until he’s been tested. The GP can do a blood test.

Yes but many false negatives in coeliac disease so if wait is going to be too long stop all gluten for two weeks to see if it makes a difference yourself. Also you can’t just cut down it has to be all or nothing There are lots of gluten free bread and foods so you don’t need to feel stopping gluten means less to eat It just can be replaced with GF foods.

I am immuno-suppressed and got an overwhelming gut infection that went on for months. I went back to GP several times and was given more and more antacids and omeprazole, antiemetics, you name it.
I was in terrible pain and became very anxious and depressed because I felt so ill. I couldn't sleep or function because of it.
I eventually paid to see a gastroenterologist privately.
My mental state improved a lot once I was diagnosed and treated.
I hope your DH gets a proper assessment and diagnosis OP.

Going to push for the consultant appointment next week to investigate gastroparesis, and to start testing for that.

Also got yakult drinks to have daily to improve gut health.

Also looked up an acupuncturist place near us that looks good so will look into booking that after the consultant appointment, unless they specifically say not to for any reason. Helps a lot to have a plan in place, and dp seems quite responsive to it all which is good, hes been a bit dispondant about trying different things recently as nothing seems to be working.

Lots of things to do now though so thank you!

This is how to self-refer for counselling whilst he's undergoing tests:

www.nhs.uk/service-search/find-a-psychological-therapies-service/

Mentioned to do that he needs to push for investigation into gasteoparesis, hes looked it up (from the bath because he ate a mini sausage roll and instantly felt like total shit) and is now even more low because he says it sounds awful and has no cure.

Dont really know what to say to him about it, he seems so fixated on finding a magic fix for it all and then hes back to normal. Whike the reality might be that he has to make major adjustments and find his new normal. But i cant force this home without coming across as cruel. Hes in denile and i dont want to be the one that bursts the bubble.

Any positive stories about dealing with or recovering from gastroparesis?

Also theres the fact that this isnt a diagnosis, just something that seems likely given the symptoms so maybe i should pipe down and stop trying to diagnose him. I just find researching and googling helpful to me as i feel more 'useful' and am doing something. I feel so useless atm.

Been testing a possible cause this weekend and he is a lot better so looks likely that it may be this...

Hes been taking omeprazole since the hospital visit, was told to carry on taking until his consultant appointment this week.

At the time acid build up was an issue, so made sence to be taking this, and it definitely helped the symptoms. So been taking this every day.

But dp mentioned that he was worroed this was causing the digestive slow down/strike. That if the acid had sorted itself, then the omprazole was now lowering his stomach acid levels too much, and his body was no longer able to digest anything.

So hes stopped taking the ompreazole since saturday and is already feeling a lot better. Still on liquid foods, but actually able to eat and not feel sick which is the first time in a long time.

Is it possible do you think that the omeprazole was bringing on gastroparesis symptoms? If the previous acid build up was caused by the prolonged vomiting, then once that stopped, the acid levels fixed themselves and then were being further reduced by the omeprazole? Dp has never really suffered from heartburn or anything acid-y when at normal health.

That's great news OP! I really hope that is what has been causing the gastroparesis, I'm not an expert and really don't know, but I imagine it could!
Take slow steps and see how things go - looking positive though!

Yeah, cautiously optimistic but hopefuly this is the turning point! I dont really understand it all bit it sounds logical to me that it might be the cause.

Im also happy that dp has engaged with it all, given it some thought and come up with this suggestion. I was worried he was becoming a bit passive to it all, and just doing what i was telling him to do in terms of diet etc. As if he had given up. Which is why i am so supportive of him deciding to stop this medication, more for the fact that he was getting involved in his illness and recovery, rather than just wallowing in how 'unfair' it was that he was ill.

Fingers crossed this is him on the mend...!

It really is so hard when it's a gastric problem, you want to eat but feel so awful that it makes you really low.

It certainly sounds like it makes sense and is a good thing to be doing!

So dp had his consultant appointment yesterday, amd i managed to finish work early so got to go with him. I think it was positive but not really any further.

Tbh doctor just said that stats all looked fine (dp had bloods done at gps last week) and that potassium levels which were low before are back to normal. BMI is good so weight loss not a concern atm but told to monitor that.

Doctor reassured that he is doing all the right things, but that recovery after a month of not eating is slow. But reassured that we are on the right sort of timeline. He advised takng the cyclizine about half an hour before eating to pre-empt the nausea, and said to keep on with the omeprazole but agreed with a lower doze to see how it goes.

But what surprised me the most is that what seems to be worrying dp the most, and hes never mentioned to me, is that hes worried he has stomach cancer or something. So doctor reassured him that bloods, camera down and ultrasound that he had at hospital would have found any sogn of this and it was all totally clear so he seems reassured by that.

So pretty much wait and see but if its not improved in 6 weeks then to go to gp amd they can get back in touch with hospital gastro to go back again.

He needs a colonoscopy. I had these symptoms for a year before I was diagnosed with Crohn’s disease. I was only 16 at the time, darkest days of my life. Hope he gets better soon.

He had a colonoscopy (that's the camera down the throat isnt it?) When he was in hospital, they found minor inflamation caused by the vomiting but everything else was fine.

Colonoscopy is up the bum - as per PP that's how I was diagnosed with Crohn's too.

Keep an eye on the omeprazole, your DP knows his body better than the GP/GI - if things start getting worse again remove that first and see if it improves again.

Glad things are improving though

From what you say the consultant has been very dismissive. Does the consultant even care what's at the route of it all, the cause? The core issue?

Because I would be very unhappy if I was your Dp.

Sounds like he's been utterly fobbed off.

They are working on the premise that the trigger was their original diagnosis when it was really bad (which i know sounds very vague but would rather not go into here) and that this is still the recovery from that.

I know it does seem a bit dissmissive, which is why i pushed for a time frame on when to escalate and whether we could get re-referred back to him, which he gave assurances of. And he did give some new advice (take cyclizine before eating, stop taking codeine as it can cause gastric slow down) so we have a plan of working on this new advice and reassessing in 4 weeks.

If theres little to no progress in 4 weeks then we go back and push harder.

But dp seems a bit happier with the advice, and i think it helped him to be tols he is doing everything he should be doing.

This may well be a finding of a colonoscopy (though not sure), but I am half wondering, from what you say, about sphincter of Oddi dysfunction. That can cause bile and gastric fluid to back up and therefore affect the stomach and liver and lead to vomiting. Worth charting the locations of the pain, and asking about it if it looks to be a symptom match. I really hope he starts to turn a corner.

Test for Hypolori, full name Helicobacter pylori. I had this for 16+ years it was pain and constant vomiting after or during eating

After a low couple of days, hes feeling noticeably better this morning. Think its connected with coming off the codeine. So last couple of days would have been withdrawal and hopefuly now out the other side. Doctor thought that codeine could have been the cause (or at least not helpimg) the digestive slow down, so habe been using paracetomol only since thw appointment. Also taking the fact that dp is copimg on paracetomol only for pain relief as a positive. Just over a month ago he was in hospital needing morphine. Hes managing to eat a protein yoghurt in the morning, a meal replacement shake at lunchtime and a tin of soup in the evening which is the most hes been able to eat in a long time.

Mood is still low though. Suggested looking into acupuncture yesterday (found someone nearby, all officially registered and works often with nhs/hospitals) who specialises in digwstive issues) but dp is not interested. Said he cant be bothered. Says he has no motivation to actively try and get better any more and is fed up of trying new things all the time.

So it might be best for me to step back a bit from it all, for my own sanity. I feel so useless and suggesting things to try is all i can do. But i worry if i step back and leave dp to manage his own care/treatment, he'll give up completely.

Not sure if anyone is actually still reading this but posting is quite cathartic so here we go

For the first time in a long time, dp woke up today feeling ok! Didnt need a bath (every morning hes been waking up at like 5am so he has time to have a bath for about an hour to settle his nausea) he was seeming so much more like his normal self!

Hes been off the codeine apart from two doses over the weekend, he was working away, 12 hour day and overnight stay in a hotel without a bath so he wanted the security of having strong that would help him.

Last night he had some food, not a lot, just snacky things, but the most proper food hes eaten in a while and it settled ok.

Not sure if hes still taking the omeprazole, ive stepped back and left him to manage the medication himself, which has helped i think.

We are both cautiously optimistic that this might be the end in sight now, but we'll see how the next few days go.

Ok got a new one... Dp was determined to habe dinner tonight, not sure how wise it was, doctor said to build up food gradually but he wanted a normal dinner so ate chicken pie and mash, amd ate the lot. Not feeling sick (yay!) But was hit by extreme tiredness and has now been fast asleep for the last hour. He is rouseable (just) and can answer questions with grunts, but can barely stay awake. Is this normal?? Its not nausea so its progress i suppose but its still worrying...

A google search tells me it might just be a combo of high carbs and big meal after nothing much for a while, and that its normal-ish?

He doesn't want any anti sickness so i guess hes ok?

Hi OP, I hope your DP is doing ok - yes the food induced coma thing is real! Don't worry..

Hoping he is well on his way to recovery!