A sound sleep...

We all slept well last night.  Alan till 11am!  I think he enjoyed not being interrupted every couple of hours to get his stats checked and the general noise of the hospital, which is not conducive to a peaceful night's sleep.

He's had a relaxing day, spending time with me, David, Vickie and Christine. He's watched some tv, had a chill out sitting up in bed, and back in his living room for more tv.  We've heard him blether to himself and laugh with Vickie and then Christine.  It's a joy to hear after the deafening silence of the last two weeks.

Early evening he was trying to cough up some gunk so D gave him the saline nebuliser for 10 mins and within half an hour he had expelled loads of gunk.  The nebuliser makes it so much easier for him to cough.

So he has recovered really well from the pneumonia but there's still something niggling him.  I woke at 6am and went over everything in my head from when he was first not himself, trying to figure it out.  

It started with a cold at Christmas, then he had a sickness and diarrhoea bug, then the ulcers started in his mouth, then he was bringing up small mouthfuls of sick / saliva throughout the day.  During this time he was also becoming more and more fatigued and red eyed, coughing a lot, and of course he eventually ended up with a rapid heart rate, fever, coughing and fast breathing and in hospital with pneumonia.

Now he's home and on the mend but he's still complaining of a sore stomach.  When he was coughing a lot we assumed his torso would be sore and causing him discomfort, after all we know how painful it is when we've been coughing constantly, so put his complaints of a sore middle down to that, but one day last week in hospital, when Vickie was about to give him his feed down his peg tube, I noticed that he winced as soon as she started giving him the feed.  Penny also commented that she'd noticed he seemed to be in a bit of discomfort after his tummy milk.  Over the last few days I had begun to wonder if he's been suffering with reflux and he's aspirated some stomach acid and that has caused his pneumonia.  

At six o'clock this morning I was determined to try and make sense of it all as I won't rest till I feel we are treating the root cause of all his recent health problems. 

As many of you know Alan suffered with severe ulcerative colitis, which was managed by medication for almost 10 years till 2016 when he had a massive flare up that almost killed him.  He ended up having an emergency ileostomy and it not only saved his life, but transformed it.  No more ulcerative colitis.

But....there's always a but isn't there?

During all the years of his UC, there was always a little question mark over the diagnosis as when tested, he also showed markers for Crohn's disease, but not in high enough numbers for that diagnosis to be undisputed.  It was always a frustration for his gastro team as CD and UC are very similar but treated sightly differently.  UC affects the large intestine (which was removed in Alan) but CD can affect any part of the digestive system from the mouth to the anus.  

So after a lot of early morning thought about what's been happening, and reminding myself of symptoms of CD and other gastro issues, I am left wondering if he is having at worst an undiagnosed Crohn's disease flare up or at best, having an episode of severe acid reflux.  

I discussed it with David this morning and his jaw just dropped, like eureka! As we look back over the last 4 weeks and how Alan has been, it is just like when he was having a flare up of UC.  The ulcers and cankers in his mouth have been so bad and his tongue swollen that I am wondering if that has also led to difficulty for him controlling his swallowing and that's led to aspiration.  The pneumonia has been a bit of a side issue I feel, a very serious one, but a side one.

Before covid Alan was seen by the Gastro team at either PRI or Ninewells in Dundee every six months.  Due to covid he's not been seen by them now for three years.  I may be way off the mark regarding Crohn's Disease (I really hope I am) but I think I am bang on with all his recent health issues stemming from a gastric problem of some sort.  

His milk was changed last year because there was a supply problem with the one he'd been on.  I wonder if that's been slowly upsetting his stomach?

Anyhoo, a phone call will be made to the Gastro nurse at PRI first thing on Monday morning. 

Just call me House ;-)))