Hospital Appointment - Or Rather Absence Of.

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  I was just wondering if anybody else here has had long waits for follow up appointments with the N.H.S. in England. I have had symptoms now for eighteen months, longer if the truth be known but that was the point at which everything kicked in,  with a C.T. Scan and Colonoscopy carried out in October and November 2016. Widespread D.D. was the diagnosis although I have had this for many years and had surgery in 2002 on account of a Fistula between my Large Intestine and Bladder. Despite repeated 'phone calls to the local hospital and assurances that I am on a waiting list and will be seen, and a letter from my G.P. to help the process on its way early last month I still have not heard anything as yet.

  I really am just about at my wits end here as I am having some difficulty in the management of this myself despite being strict with diet and not being able to figure out if I have the wrong approach or I may need surgery once more.      

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  • Posted

    I had the same problem because I only had DD ( there words not mine ) I waited 6 months and still didn't have a appointment. So I phoned them didn't get very far so phoned my consultants secratery   She was really nice and told me it was too long so she made me an appointment. I was grateful that I didn't have cancer but I still needed help with my DD. When I saw consultant she wasn't any good just gave me a e- mail address and told me to read it. What a wast of time and energy. I then when to my GP asked to see a dietitian was told that leeds doesn't have any. To cut a long story short my daughter works in the same building as them. I went to see another GP who referred me to them but still waiting   I ended up paying to see a gastro consultant who did a sigmoidoscopy took 4 biopsys the GP said they were clear   That was last year still haven't had an appointment from consultant 

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    • Posted

        Thank you for your reply, as you're in Leeds and having difficulty I don't suppose that Scunthorpe will be any better. As you, and others here, say support from the medical profession is patchy at best to almost non-existent at the other extreme. 

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  • Posted

    Hi David, 

    I had my first flare up needing hospital treatment almost 4 weeks ago. I had the colonoscopy a week ago after ct showed a blockage. I was not given an appointment to see anyone and an not expecting a letter with one due to the fact no medical professional seems to feel we need help learning how to manage dd.  

    If I hadn't found this forum I don't know where I'd be as its only taking advice from others I've learnt do's and don't's and trial and error. 

    I'd love to be told if blockage gone or still there and why I'm still constipated and some days don't go at all.  

    Good luck and hope you hear soon. 

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    • Posted

        As you point out, the Health Service appears to be quite dysfunctional on this condition and, more often than not, it really is all dependent on mutual support and discussion on forums such as this. When I first had an operation for this condition in 2002 there was nothing so I figure that we just blundered on until the next time or suffered continually with no support at all.  
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    • Posted

      Hear, hear David

      I was diagnosed in 2001 after passing blood and rolling on the ground in agony.  After a barium enema I was given NO medication, NO advice apart from a pamphlet, and just as you say, left to blunder on by myself.  I was lucky as a nurse at my GP practice was also a sufferer, and she gave me some dietary information in passing, when I went for a BP check!!  I got my first antibiotics 6 years later with the first flare up. 

      I had 3 flares in quick succession from August 2016.  My new GP did send me for a colonoscopy and CT scan after that, but all I got back was a copy of the letter from the hospital to the GP saying "only Diverticular Disease, a benign condition", another copy of the same pamphlet, and nothing since. 

      Now my doctor is reluctant to prescribe antibiotics, because of antibiotic resistance.  I've learned a lot over the years, and in this last year, the Forum has been invaluable.  All I can say is "when is an actual doctor who has got this disease going to join the forum" because if you haven't got it, you have NO idea of just how bad it can be.  And all endoscopists should be made to have a sigmoidoscopy and colonoscopy.  Some, like mine, are good caring people, who stop when the pain and medical conditions dictate, and others, from these reports, are anything but.

      All we can do is support each other and hope that our experiences help others.  But we are not medical experts and from these posts opinions and suggestions do vary.  We each have to find our own way.

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    • Posted

      Hi Kathy

      The NHS is pretty ropey about some things, but if the blockage was still there, you would have been contacted.  4 weeks from the attack is still very early days and you will continue to have variable bowel movements for some time.  Your insides have taken a battering and the medication has stripped out all the good bacteria along with the bad.  It takes time to heal inside, and to regain your gut health.  You will have seen posts about taking probiotics and a stool softener.  If you are constipated the stool softener should help, rather than a laxative.  It is gentler, but takes a couple of weeks to become fully effective.  I take both Fybogel and a live bio yogurt, and these help, and keep me well cleared out.  But I do have more frequent bowel movements than I used to - 3 to 6 a day.  This is my new normal.  The one thing you don't want to do is get sucked into the laxative/immodium cycle.  The good thing is that for most of us, it does get better over time, it just requires patience.  Best wishes.

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    • Posted

        The whole experience was unreal; in the late summer of 2001, I was badly affected by repeat U.T.I's. along with chills, passing razor blades and whatever else went with it so I was given antibiotics to see whether the infection recurred once the course was finished after which I was referred to a Urologist who treated me to a cystoscopy and four colonoscopies after which he was still scratching his head. Month after month of pain and wanting to live in the toilet. By chance, at an appointment late in the summer of 2002, I saw a different Urologist of more junior standing than the previous one who said that he thought the problem was the bowel and immediately prescribed long-term antibiotic treatment along with a referral to a colorectal surgeon. A fistula, resulting from Diverticulitis, connecting the bowel and bladder was the cause and was operated upon in January 2003. The surgeon, and one or two others, could not understand why I had been needlessly subjected to so many colonoscopies. 

        Fifteen years, plus twenty months and counting, later and no guidance or medication but repeated assurances that I will be seen - someday. 

        How on earth someone can say, let alone print, that D.D. is benign I will never understand. True, many have it without knowing but others must surely be put at grave risk by such an attitude.           

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