Painful diverticular disease but know one is listening to me has anyone else had this problem

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Ok so had DD for 5 years now I'm only 32 just had another coloscopy but was only told u have it on the whole of your colon went back to see consultant who wasn't v understanding and kept saying well I don't think it's this that's causing the pain but yet the other consultant and my g.p said it is that causing the pain he then said well if u have the whole of your colon removed u can die let's just send u to the pain clinic I said well no thanks been there and tbh they didn't help said the pain was in my head and tried putting me on antidepressants um don't think so I'm on tablets for mi ibs and control the other pain with paracetamols and the odd codeine also a high fibre diet when I can as it makes my ibs flare up I'm really fed up and disappointed with the care I've had they don't wanna know and always fob me off and seem to always disagree with my gp as I told him I had a flare up of diverticilitis was on antibiotics if any1 else has had this same problem help!!! 

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  • Posted

    Hello , I sympathise with yiur plight, I am a 59 year old lady and have had stomach problems since I was in my 30's. Like yourself I was diagnosed with diverticular,ibs etc.... I suffered all throughout my 30's and 40's and well into my early 50's. Tried to control pain with pain killers and diet until eventually I had enough and demanded to be seen by a hospital consultant. Finally I got a result. I have been suffering with ulcerative colitis all the time. I am now on the correct meds and my condition is manageable although still debilitating. I urge you to go to your gp and demand so proper diagnosis from the correct professionals . Hope this helps. Let us know how you spare getting on x
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    • Posted

      Thank u for your advise going to ring another g.p as mine seem to have sided with the hospital and fobbed me off with more tablets they seem to think it's nerve pain hmmm funny that considering when I have flare ups I'm in agony I don't think the consultants will do anymore as I've had 2 colonscopys and a ct scan all showed severe dd on the whole of my colon so really does look like I'm stuck with it sad I hope all is well for u x
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    • Posted

      I can really understand your frustration kellie, one of my un informed gp,s once told me that my pain was nerve pain too, stupid man. In my experience (and I know this to be fact ) as I now have a wonderful nurse specialist too, that unless you are in a flare up when the colonoscopy is performed nothing will show up. So, my advice would be to keep going back to them until they take you seriously. Keep your chin up honey xx
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    • Posted

      At last some1 who has had the same problem I was beginning to think I was going crazy.thank u for your advice.can I ask how long it took u to find the right professional who listened x
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    • Posted

      It was a while Kellie but it was good while ago too, these days , doctors are diagnosing earlier because I believe they are better informed now and also IBD or Inllammatory Bowel Disease is more prevalent now than ever. Much younger people are being diagnosed too, I know this because I see them regular at the hospital . I urge you to go back again and again, it is  your right to get the right diagnosis. Change gp's if you must. Good luck and let me know how you are getting on sending love and hugs wink
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  • Posted

    Dear Kellie,

    Unfortunately my personal experience does not include ibs, but there are some really nice people on Divi Diners who have/had ibs and they will be able to help you.  Have you been advised about your diet at all?  The dd sufferers initially go on a LOW fibre diet (or low residue) to give your colon a chance to rest and then gradually reintroduce foods over a period of time.  This not only gives your system a break, but also helps to identify what sets off the flares.  Please do check out that discussion; I am sure you will find lots of help.

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  • Posted

    Kellie. Amitryptilline is a antidepressant but its also used in neuropathic pain. The dosage is usually lower than what you would take to treat depression. I have myself been prescribed these for migraines. Is tjis what they prescribed you? I just gone through two months of acute diverticulitis after a appendecectomy. It took 5 trips to gp and 5 trips to a and e. Problem was I was given iv abx with appendecectomy which masked the div. I don't think I had appendicit at all anymore. They saw fluids in my abdomen during op. Appendix was intact but a bit red on the tip. I feel for you, its not nice to be in pain. I was putting away 60 mg of codeine and it wouldn't touch my pain at all. Still they sent me home crying telling me to take over the counter pills, which I already was anyway and to come back in 6 to 8 weeks. I felt like saying to them I be dead by then if you have me waiting that long. I didn't say it though. I did however tell the ward manager I go another a and e which I did and that's where I finally was diagnosed.
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    • Posted

      Dear both - I also take amitryptiline for migraine - 50 mg at 2030 each night.  It seems to work for me, but I cannot even begin to imagine what it would be like to have a flare up and a migraine at the same time.  I think it would be dangerous, as well as painful.  Take care.
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    • Posted

      Hello yes they were the ones however they didn't suit me so had to come of them just getting over a flare up now I've gone back to my original doc who first thought I had DD.i suffer with migraines to makes me wonder if it's all connected?my doc also told me foods to avoid some I was very surprised such as bananas marmite pickles would never of thought of these foods. Thanku for the reply hope all is well with your-self x
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  • Posted

    I just come out of hospital.could not cope withain anymore. Seriously thought my guts were going to rupture. They stuck me on iv fluids and told me to drink loads. Which I did.had a lot of painreleif and rest. Stayed in for 3 nights. Pain now better. Improved a lot. I think the rest did me good. Now started on fybogel after every meal and loads of fluids. It seems to work so far so fingers crossed. I really don't want or need another flare-up. This is the best my pain has been in over a month, where I only need paracetamol with only some breakthrough pain now and again. I'm no wusd, given birth on gas and air three times, last delivery was back to back. I think this is a bit psychologically tormenting too as you never know when another flare will strike or how long it will last for. I don't even know how to feel when I'm supposed to not have flare any longer. At least in a delivery you know its not gonna be weeks or months. Kellie, I really feel for you. You are young and it seems to have had a big take on you this horrible disease. I don't know how much of my colon is definitely affected even though on the scan its only showing in my sigmoid. To have the whole colon affected can not be easy. I think you are probable better off getting a second opinion even though they might say the same at least you tried and explored. It might put your mind at rest. When I was in hospital now I first had kidney stone, then kidney infection and finally a diver flare. Hmmmm. Just goes to show. I asked how can I get a kidney infection after starting antibiotics? Turns out the doctor didn't even know I was on augmentin nor my urine culture was negative. I'm not saying your doctors don't know what they are doing but if you are not happy with their management of you care you should seek a second unbiased opinion. Its your entitlement. Best of luck to you Xx
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