Has anybody else had DD stomach cramps for over 3 months?

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After several visits to A&E and GP (who diagnosed IBS) it's finally been confirmed that I have symptomatic DD. I have been in pain 24/7 and vary from diarrhoea and constipation. have tried everything I can think of - liquid diet, bland diet nothing seems to help. Am sick of waking up every morning with chronic stomach cramps. Used to be very active and enjoy life but have been knocked for six with this. Does anyone have any advice? I'm a 67 year old female desperate to get back to normal!

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  • Posted

    Hi ,  so sorry to hear that you are in so much discomfort.     I have had DD for years and the only thing that has really helped is Fybogel.  I take a sachet morning and night.   This gives me more control over my bowels and has stopped my tum from being so swollen.    They dont suit everyone but for me they are wonderful.    I had got to the stage where I could not go out anywhere without the knowledge of where any loo was and when I needed to go it was urgent, really urgent and I did not make it on some occasions, so embarrassing.   Now I take the Fybogel as I say and if I feel the need I take a very tiny Codeine tablet. Thankfully it is not that often.    I had the exploratory xrays of the bowels, which isnt pleasant but at least they have a good look and see there are no nasties.

    Keep your chin up.   I am 69 this year.

     

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  • Posted

    I take Movicol, although I'm sure a dish of sprouts would have the same effect.  The consultant suggested that I go at least twice a day which I'm finding difficult, so as long as I can manage once, then I don't get the pain and discomfort.  If I don't go for more than three days then I'm in pain, nausea, vomitting, then diarrhoea.
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  • Posted

    Valerie, if only I knew the real answer.  I have suffered the same, excrutiating cramps since diagnosis (following a Sigmoidoscopy) when in my late 50's (I'm now 72).  However, I don't have diarrhoea and very, very seldom am I constipated - despite taking 30/50 Co-Codamol Capsules which, according to medics, make one constipated.  Interestingly, it is the Co-Codamol which does give me release from the cramps.  I'm convinced that this is the ONLY palliative treatment.  I have tried every Prescriptive drug available - all to no avail.  Give them a go (I understand they can be addictive but, who cares)
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  • Posted

    Thanks for your replies it's good to know you're not on your own with this horrible disease. I've had all the scans and a colonoscopy (which showed diverticula throughout my colon) - both my daughter and father had bowel cancer so at least they didn't delay things there.  I've started the Fybogel and Movicol if that doesn't work - it's really the cramps that are getting me down, I take paracetamol and diazepam 3 times a day and amitryptoline at night.  I'm at the GP surgery tomorrow to see about pain management, not so keen on taking so many meds! 
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    • Posted

      I would avoid anything with codeine in, and even paracetamol makes me constipated.  The diazepam and amitryptoline are probably to relax your body, but can be addictive, so I'd avoid taking them long term.  Anything that's going to keep things moving easily through your body would be beneficial.  Try wheatgrass - you can buy it in powder form which can be mixed with orange juice, or in tablet form which is not as effective.  Google it and all its benefits. wink
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    • Posted

      OK, you are probably right about the diazapam/relaxation but these drugs (in the benzodiaizapam family) are addictive and can be quite dangerous (remember Valium and its conequences?).  Coming off these drugs is a horrible experience.  So, Codeine makes you constipated - isn't that heaps better than contiually shitting and making yourself sore?  As I said; take Co-Codamol and regulate them yourself.  Avoid orange juice at all costs (and all other acid foods/drinks).  See the paper written by an American Gastrologist and expert in the field of DD who emphatically states that acids are the cause of cramps, pains and flare-ups. 
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    • Posted

      DD affects different patients in different ways and personally I'd rather an empty bowel as it's the hard faeces caught in the diverticulae that cause the infective problems which it why you should aim to be regular. [Diverticulitis occurs when there is inflammation and infection in one or more diverticula. This usually happens when outpouchings become blocked with waste, allowing bacteria to build up, causing infection. WebMd] 
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  • Posted

    Hello Valerie

    I can't imagine why you need diazapam and amitryptyline.  I know that the latter can be good for pain management (inflammatory) but I would forget the rest.  Nobody wants to take excessive meds and its patently clear that those you are taking are not doing the trick.  Forget them and speak to your GP about Co-Codamol.  Get to grips using these and then moderate the doseage.  You know your body.  My best wishes.  This disease is s...

    John

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    • Posted

      Went to GP - his answer was to up the meds - unbelievable!  Have a couple of good days when the cramps aren't so bad but this morning the pain literally knocked me off my feet.  Have made an appointment (which I'll have to pay for but health is more important) with the surgeon who operated on my daughter - saved her life she'd been diagnosed with IBS for 18mths when in fact she had bowel cancer. He did a terrific job and I have faith in him.  
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    • Posted

      Hi Valerie.  My wholhearted agreement.  When I had to register with a new GP (having moved), I told her that I suffered from Diverticlar Disease (stressing suffer).  Her answer was "yes, you and a million others".  It is clear that they do not know what to say or are completely disinterested.  I suspect the latter. Good luck with your Consultants appointment.  Be interesting to know what his slant on it is. My best wishes. John
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  • Posted

    I changed gp's and was lucky enough to find one who not only understood DD but was symathetic. Previous gp was useless and said sounds like kidneys and would not book me a Mri scan.Soon as new gp heard symtons .straight away arranged scan and hence correct treatment followed. I have codrymal for pain with arthiritus and buscapan for any DD spasams. and fybergel twice a day. He also lets me keep antibotics in the cupboard to take if I think I have a infection (like right now) which seems to happen every 4-5 months.So if unhappy with GP find one that understands.
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    • Posted

      Aren't you the lucky one.  I had to go back to my 87 year old doctor.  He is wonderful but sheers, what will I do when he is gone?
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  • Posted

    This why I started a separate discussion on DD.  Treating a potentially life threading disease as though we are, hypochondriacs, psychotic or worse is appalling to me
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