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Severe symptoms 1-2 times a year

Posted , 6 users are following.

Sunbite
Sunbite

I am desperate for some help and just don't know where to turn.  I had been diagnosed with IBS around 2009 but, a couple of years ago, after a colonoscopy the consultant told me I had diverticular disease.

Once a year, usually around March-April (go figure) for at least 5 years I have suffered with an instensely bad 'bout' - severe vomitting, diarrhoea, weakness to the point of passing out, followed by bleeding.  The bleeding has got progressively worse each bout I experience - it was originally pink and didn't start until a couple of days in.  Now it appears almost instantly. And I'm currently in the middle of experiencing a 2nd bout this year.  They are terrifying as the pain, passing out, bleeding - all when on your own - is extremely hard to cope with.  And oddly I know when it's going to happen - my mouth goes sort of numb.  This isn't gastric fluids as I've watched out for that - I really can't explain why that happens.  But 30 minutes after I notice the sensation, the 'bout' offiicially starts.  This time I got myself upstairs ready for it to start.

I really need some advice how to cope with this and whether I should push for further action from my doctor/consultant.

1 like, 39 replies

39 Replies

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  • PMolly
    PMolly Sunbite

    Posted

    Hi Sunbite,

    This is sounding very painful and frightening. With your symptoms I would be going straight to the doctors/emergency department rather than going upsatirs to bed.

    The only thing that enables me to recover from a 'bout' is intravenous antibiotiics followed by 10 days of further oral antibiotics - like you my onsets are very quick and I am unable to walk comfortable - usually double up with pain. The bleeding is a concern as is the fact that symptoms are worsening.

    I would just encourage you not to put up with these symptons - keeping banding on the doctors specialist door - AND get a friend to call an ambulance. A friend of mine ignored similiar symptons and it very nearly cost hime his life.

    Be determined and goodluck,  razz 

  • carmel83758
    carmel83758 Sunbite

    Posted

    Yes push for further action.Nobody should feel this bad and they should at least diagnose it.
  • Sunbite
    Sunbite

    Posted

    Oh, thanks PMolly - I was hoping someone would tell me this is perfectly normal and just something we have learn to cope with sad  Doctor's appointment made for later but I'm not holding out much hope as, even though I tell them, I really don't think they understand the severity of the symptoms when they hit.

    I've been trying the prevention route as I understand it can't be cured, but just seem to have made it worse having had 2 instances so far this year and the bleeding started the 2nd visit to the loo.  I've been going mad on the fibre which worked well at first, but for the past few weeks all it's done is led to extreme bloating and awful wind.

    • PMolly
      PMolly Sunbite

      Posted

      Hi Sunbite,

      I really understand the 'fight with fibre' thing. I have had 3 hospital admissions - Nov 2013, April 2014 and then readmiited early May - (still in pain). Like you I was diagnosed in 2009 but did not have any real trouble until 2012 when it has got progressively worse.

      so the 'bowel health thing' becomes a focus.

      I think my trouble is the I have a sluggish system and someitmes no matter what I throw at it - spinach day and night, laxatives etc I just go from constipation to diarrohea with no fathomable reason. I keep looking for the perfect pooh that my doctor described - 'like horse pooh...nice and bulky and comes away from the sides cleanly' - Now THAT was an embarressing discussion.

      Anyway I think for me sometimes I do not fully empty my bowel and some faeces can get trapped - or something - and my docs says I really don't have too much control over it - great!

      However I am paying attention to me diet in a way I did not in the past -but I don't go over board on the fibre because that can cause real problems too. Also important to drink LOTS of water...

      Let me hear how you get on with the doctor - oh - also ask for a blood test - because the infection markers will show up there. each time in hospital I have not been able to go home until those infection markers are back to normal...I hope this helps...

    • Sunbite
      Sunbite PMolly

      Posted

      I've had issues since I was a child with my digestive system.  I remember my poor Mum having to give me enemas as a last resort - I couldn't have been more than 8 at the time.

      So have been desperately trying to keep regular but it seems that daily Fibogel, baked beans, high fibre brown bread, Weetabix etc. haven't really helped at all even though they did for a while.

      I know my temperature was raised overnight Saturday so I'm pretty sure it was an infection.  But how on earth are you supposed to get to a docs for antibiotics if you can't even make it 6 feet to the bathroom sad  And this always hits in the evening - very inconsiderate of it!

    • jacqueline01135
      jacqueline01135 Sunbite

      Posted

      Baked beans are supposedly a no -no as is anything with a skin 

      I'm a night time or week-end  in trouble type as well .ANSWER is

      RING  111

    • Sunbite
      Sunbite jacqueline01135

      Posted

      Arrggghhh - you see, no-one has ever told me that about beans before!  Thanks for that Jacqueline
    • jacqueline01135
      jacqueline01135 Sunbite

      Posted

      Beans on Toast   Never again. No peas, sweetcorn  nothing with a frock on 

      peel fruit tedious I know but , think of the juice running down your chops

  • Sunbite
    Sunbite

    Posted

    Carmel - they have diagnosed it.  My company provides private health care so it was a private hospital which diagnosed diverticular disease a couple of years ago.

    And they aren't worried about the bleeding it seems mainly because I really believe they don't fully understand the severity.  They seem to have made an assumption and that's final.

    I'll push the doctor later for further action.  Even if it's a return to a different consultant for some advice I'd be happier.

    • carmel83758
      carmel83758 Sunbite

      Posted

      Fair enough Sunbite. But you have to choose between accepting what the doctor says or looking to alternatives. I put the alternative.

  • jacqueline01135
    jacqueline01135 Sunbite

    Posted

    you must push as long and as hard  as it takes to get some help  I'm inthe middle of a flare and spent two hours with a paramedic because of bad reaction to a drug 

    There are a whole army of Divi sufferers who all sffer the same problem BEING

    IGNORED

    Get on the phone and start to get some action .because, believe me no one else will

    Don't be afraid 

    • Sunbite
      Sunbite jacqueline01135

      Posted

      I'm going to push at the doctors later for another consultant visit.  When I was diagnosed all that happened is I was given an A4 piece of paper with some descriptions/advice.  Not once has any doctor given firm instructions on what/what not to do. 
    • jacqueline01135
      jacqueline01135 Sunbite

      Posted

      Got it in one, all I ever get told to do is """drink plenty of water ""

      A&E is a good place to go, at least they listen and do their best The last time

      I did the out of hours job  They kept me in

  • Sunbite
    Sunbite

    Posted

    @Carmel - forgive me if I sounded abrupt, it's never my intention to do that but I know I have a habit of sounding brusque.  I'm greatful for any and all advice and so glad I found this group!

    I'm really not sure what the alternatives would be.  I've seen 2 doctors at my surgery and 2 different private health consultants since this all started in 2009.  The only way they'll see what actually happens is if I call an ambulance when it's occuring.  And I keep threatening - but just never do.  

    Last time I had a blood test about 2-3 days after it happened and apparently that showed signs of an infection.  So I have a feeling one of the diverticula gets infected and I have a weak vein nearby which keeps bursting.  

    • carmel83758
      carmel83758 Sunbite

      Posted

      It is ok Sunbite. You didnt sound abrupt and noone would blame you if u were if you are in pain or upset. Pleaes remember that people will advise you on what worked for them or what worked for someolne they know, this does not mean they are right. I really do feel for you and wish I could help you by waving a magic wand over it all to make it disappear. But believe me medication is not the answer. That just masks the real problem.
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