At our wits end

[Junglegirl]

Hi I'm new here and am not the sufferer of UC, but if you can give any advice or help with what we should do next I'd greatly appreciate it.

My son is 32 and was diagnosed with UC about 9 years ago. He has suffered flare ups from time to time but generally copes without much compliant, in fact I admire him for what he puts up with but I digress. 16 days ago after a dodgy take out he started with severe diarrhoea, at one stage collapsing in the street. He has just finished a course of steroids to get a flare up under control - which worked, prior to this meal. However, he believes he got food poisoning as his wife only had two very small portions of his meal and was violently ill the next day - resulting in them both being bed ridden - apart from toilet runs or crawls as the case may be.

The diarrhoea, although not as violent (and no vomiting) continues. There is no blood and no pain as there is normally with his UC and the diarrhoea is very watery to the point he can't leave the house. He also sometimes has a fever with that. He is trotting off to the loo several times an hour.

He finally got a Doctor's appointment today, after following the advice of not to go until 2 weeks of diarrhoea has passed - only to be told by the doctor that they do not investigate cases of diarrhoea as when they do the symptoms usually stop. My son did take a sample with him though and this has been sent off to the lab, results on Friday. He queries with the doctor what he should do next as his home life, work life, and looking after his daughter is becoming next to impossible. He lives 4 hours away from us, so we can't get to him should he become very ill overnight.

So he is not eating very well, is just about managing to drink some fluids, spends his days and nights  on the toilet or in bed, sometimes runs a fever and looks like death. He takes the electrolyte replacement sachets but the thought of no help and no advice just seems so wrong - what on earth is he supposed to do now?  

I dread that the sample comes back clear of bugs - as I know he will be just left with unrelenting watery diarrhoea  which is not UC related.

Any suggestions, please?

[willow24 Administrator]

Hi, any bug be it food poisoning or general d&v will send ibd into a flare if you get it. the GP should be better informed, and its disgusting they said wait for 2 weeks.  your son needs an urgent review by his consultant, and admission to hospital as if he is barely managing fluids and having diarrhoea a few times every hour, will be very dehydrated. to be honest if I had that advice from gp I would put in a major complaint. 

Please let me know how things go, i cannot urge enough for your son to be seen by consultant ASAP tho.

Good luck x

[Junglegirl in reply to willow24]

Thank you for your response, I will report back when the tests results are back tomorrow.

[CormorantWatcher]

Two weeks of diarrhoea is "ok"? In who's world? Your son needs to ask for a second opinion, or even go to A&E, as the fever and other symptoms, plus his underlying condition should be raising attention. As it's not, he needs to be, before it worsens, or as you say, he can't do anything through weight loss.

As an aside (and probably too late) did they report the take away? It does point to poisoning and I can't believe (again) that his G P has shrugged it off, especially as his wife also had the effects.

[FRreedman in reply to CormorantWatcher]

Having been a sufferer for 48years, i thought i had seen or heard it all. First of all a known sufferer of Crohns or UC should have been referred to the A and E dept within 48hrs of a discrepancy in normal (for them) bowel movements. The gastrointestinal team should check test and remedy any problems. Not least the problem of dehydration. I would contact the team or consultant and tell them what has or is happening. I would then sort out my GP. If the GP remains unconvinced, I would report him to the BMA, and urgently change my GP. If you want any further info please don't be afraid to ask. Meanwhile don't let the buggars (excuse the pun) get you down 

[Junglegirl in reply to FRreedman]

Hi, many thanks for your reply - it's very reassuring to know that we are not nuts - it's like being stuck between a rock and a hard place - I'll let you know what happens next. 

[Junglegirl in reply to CormorantWatcher]

I don't know about the take away - they have never said anything so I doubt they did report it.

The NHS choices website apparently says that if you have diarrhoea for two weeks it is considered severe and you should see a doctor - as you know the doctor didn't suggest any help at all.

[Junglegirl]

hi many thanks for your replies, I'm glad I am not the only one who thinks his treatment is ludicrous. We still await the results tomorrow - I have told him to go the A&E but he is of the mind that they will not treat him seriously either. I have to admit that before he was diagnosed he was in A&E several times - for better or worse he was eventually told that he had metabolism that a world class athlete would be proud of as he makes the blood loss up as quickly as it happens. It took several trips to A&E and eventually a private appointment to see a specialist before he was diagnosed so his belief in the system is already shaken.

It's so hard not to be able to sort medical advice and help that is useful when he is suffering like this. 

I'll be back (famous last words) 

Again many thanks for taking the time to respond it's greatly appreciated.

J 

[FRreedman]

Contact st marks hospital at Northwick Park in Harrow(Nw LONDON)  They will certainly be interested as they are a centre of excellence. Known as the tops for bottoms 

[Junglegirl]

Sorry posted in wrong place - no results yet - still waiting ... my son thinks this is a good sign as perhaps the culture is actually growing something! No promised for Monday.

The Diarrhoea has started to slow, and although he is not having to run off several times an hour, he is still heading off quite a lot over the day so still abnormal.

Thank you for the "tops of Bottoms" post - its noted