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Nocturnal Diarrhoea


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My 14 year old son was diagnosed with pots earlier this year.  (He was already diagnosed Hypermobility Spectrum Disorder - 1 point off a HEDs diagnosis under the new criteria.) Currently on Midodrine, which has helped a little, but not enough.

In May he started waking in the night with episodes of nocturnal diarrhoea.  We’ve been through everything with our GP and then with the Specialist Gastro Nurses.  The assumption was that it must be constipation overflow, as he had this when he was younger.  He was put on Movicol (macrogol laxative) but it made things worse and on examination the GP found no sign of constipation, so switched him onto Loperamide for a week to see if that helped.  It stopped the episodes, but as soon as he stopped the Loperamide the episodes returned.  Gastro nurse suggested stopping all meds for a week, then trying a complete disempaction regime, which we did, but had no effect at all - other than to make his pots worse!

He is now seeing a Gastroenterologist, who is basically stumped.  (On examination this week, yet again there was no sign of impaction or constipation.)  She has sent off a sample for fecal calprotecting tests and taken a raft of bloods to look for inflammation and if anything shows up she will do a Colonoscopy, but she has already said that she doesn’t think it is likely to be an IBD and it may be AD related, in which case she can’t help him any further.

The episodes either wake him in the night or start as soon as he goes to bed and relaxes.  They are explosive and painful and can keep him up right through the night.  More recently he is suffering severe abdominal pain in his central upper abdomen when it happens and of course, as is usual with gastro issues, it sets off lots of AD symptoms in general.

Last night, while he was having the diarrhoea he felt a sudden pain in the back of his neck, which then started to burn.  He suddenly felt extremely disorientated, confused and felt like he was losing consciousness, but not in a potsy way.  I am not sure if this is related to the diarrhoea or his HSD, but am concerned that if it starts happening regularly there is the possibility it could be CCI.

Has anyone experienced anything similar or does anyone have any thoughts about what could be causing this?  Some sites I have read seem to suggest nocturnal diarrhoea is a symptom/red-flag for AD, but I can’t seem to find much else about it, other than it can be a sign of diabetes, which has been ruled out.

 

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Is there something common he is eating before bed? I have noticed since starting my keto diet (due to weight issues) my bowel movements have gotten so much more regular. I don't have celiac or anything GI related but not having the carbs has made such a huge difference it makes me wonder if there is something there. 

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4 hours ago, StayAtHomeMom said:

Is there something common he is eating before bed? I have noticed since starting my keto diet (due to weight issues) my bowel movements have gotten so much more regular. I don't have celiac or anything GI related but not having the carbs has made such a huge difference it makes me wonder if there is something there. 

No, we have watched his diet carefully and can’t find any common link.  He eats at 6.30 pm, goes to bed at 10.00 pm and the episodes generally start between midnight and 2.00 am.  It will even happen on nights where he hasn’t eaten in the evening because he didn’t feel well enough.

 

 

 

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