Stomach problem?

[chrissie57]

Hi, everyone
Hope this is the right place to post, I feel as if I only post when we have a problem.

Over the last couple of days, Douglas has been experiencing stomach ache and intermittent nausea. I also feel his stomach is a little swollen.

He does not want me to phone the doctor or the hospital but wants me to ask at our pharmacy and see what people on here advise? I am obviously rather concerned but am unsure how concerned I should be.

TIA

Chrissie

[Ellie]

Hi Chrissie.

Any chance Douglas is constipated - nausea, stomach ache and swollen tummy are often signs of (bad) constipation. Has he an appetite?

I do think it is one of the times to overrule him, err on the side of caution and ring GP.

Hope there is a simple explanation.

Love Ellie.

[chrissie57]

Thanks, Ellie. I did wonder if constipation could be the cause

[Ellie]

A GP or nurse can palpate his abdomen and feel for impaction or, worst case scenario, he will be X-rayed.

If it's constipation, a few Movicol (or similar) should do the trick and he may need to take a maintenance dose of laxatives (like I do)

Best wishes to you both xx

[JAY TEE]

Christie, yes there are problems with MND and our food. I do have bit peg food but can still manage to eat my food mashed up. I do have bad constipation and sometimes up to five days.
I have stomach pain with lots of rumbling and I drink plenty of water at least 1.5 litres and am naughty have a pint before bed every day.
This last week have been opened bowl three times.
If not been in evening after tea take 10ml Senokot and if not gone next day another 10ml and Senokot tablet as well.
Hope able sort problem.
Best wishes John

[chrissie57]

Thanks to Ellie and JAY-TEE for the advice. Doctor came and seemed satisfied there was no impaction, he thought Doug had some sort of stomach bug. Recommended Immodium and dirolite, as normal. Bloating does seem to have subsided and hopefully I can get some nourishment into him.

Unfortunately Doug was refused PEG and RIG so is dependent on what I can put in his mouth.

[Ellie]

Happy to hear that Douglas seems to be more comfortable.

Thanks for reminding us about Dioralyte, Chrissie - it can be really useful.

I wonder if a month on a good probiotic would help him? The good ones are quite expensive, mind you, but maybe worth trying.

Either way, it can take up to 2 weeks for my digestive system to return to 'normal', or into some form of a routine at least, so it may take Douglas time too.

Hopefully he can build up some lost energy through eating.

Thinking of you, Chrissie.

Love Ellie.

[chrissie57]

Just to add - Doug's stomach was swollen again today to an extent that I called the Doctor out again. He is now back in hospital, just come back from x-ray to check he has no actual blockage. Seems the advice from the first doctor was completely wide of the mark, I think he did not really grasp how MND can affect someone.

[Ellie]

Oh my days, you have both been through the mill!

Are you any nearer to finding out what is causing Douglas' tummy to swell like it is?

Take care of yourself.

Love Ellie.

[chrissie57]

Hi, Ellie
X ray showed a mass on one side. Doctor said something like she would see what the surgeons said which Doug has taken to mean he might need surgery but it is too dangerous to put in a peg/ rig surely it would be too dangerous to do any surgery that wasn't actually vital to survival? Think we may have misunderstood but Doc has vanished.
chrissie x

[Ellie]

Oh Chrissie, I am so sorry.

I feel so useless in that all I can offer is a big virtual hug.

We all wish Doug the best.

Love Ellie.

[Terry]

Hi chrissie,

Hope Doug feels a little better and they can treat the blockage with drugs.

Love Terry

[chrissie57]

Despite agreeing to be admitted to hospital, Douglas is refusing food and medication

[Ellie]

I am so sorry Chrissie - how concerned are the doctors and has anyone mentioned palliative care, especially meds?

Wishing you strength and fortitude.

Love Ellie.

[chrissie57]

Hi, everyone
I am with Douglas now. He is trying to sleep but nurses have had to sort him out twice in half an hour.
I am now unclear as to why he was refusing treatment - he has mentioned his vent nurse twice but he has very little energy and cannot manage to spell out what she has to do with his food/medication.
He is on a short stay medical ward so I am not sure they anticipated any major problems but my fear is he is giving up.
His neuro nurse visited on Wednesday. She was the person who told him he would not be able to have a power chair and she has now told him he can't have eye gaze, which we were unaware of. Combined with the consultant who told him in September that he had 3 -6 months, which end in March, I am afraid he is going into a bad place. Please note, my memory of the conversation with the consultant is a little different and I would not consider a prognosis like that to be absolute. When she said that Doug was just getting over the chest virus and I now realise they did not expect him to survive - but he did and I don't want any self-fulfilling prophecies muddying the water