How do I cope with this?

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Hello all,

I've just joined the group after trawling the net for something helpful about DD and this site seems great.

Until about 2 months ago I'd no idea I had DD.  I had always put my gut problems down to IBS, which I was diagnosed with years ago. 

Two years ago I had a major flare up of intense pain and diahorrea and asked to be referred back to consultant I'd been under. I was sent a letter for a signoidoscopy exam. This filled me with horror as when I'd previously, about 4 years before, had this test and it had been extremely painful and they had to get a surgeon to attend and he basically said he was not prepaired to carry on with procedure as I was in such intense pain.  I was then booked for a coloscopy, this too didn't go according to plan and I had to be totally sedated as again the pain was so bad.  They did discover I had a large benign polop which was removed, Again I was told I had IBS but nothing about DD. 

I eventually got an appointment to see the consultant I'd seen 4 years ago, by which time the pain had gone and I was feeling ok. Basically he did a quick examination and said it was still IBS and that because of all the problems previously with procedures he was reluctant to "put me through them again".  I suppose as I wasn't in pain at that time I was more than happy to leave it at that.

Just after Christmas 2013 I began having diahorrea like I'd never had before and was in intense pain on left hand side just under my ribs (that's where I always get the pain).  This went on for almost 2 months and I was referred to see a consultant, the previous one had retired I was told so someone new.  Again the dreaded letter to have a sigmodoscopy arrived.  When I attended the appointment I told the consultant I wasn't having the procedure. He had read my notes so knew what had happened previously. He was so reassuring and easy to talk to and explain how I was feeling. He said he would stop the procedure if It felt at all uncomfortable but it was up to me entirely. I was left alone to decided what to do.  I didn't feel under any pressure at all to have it done but decided I would.  To start with it went ok but then I started to feel extremely uncomfortable and it had to be stopped.  He felt a barium eneama would be far more tolerable than a colonoscopy and he was right.  Not the  most pleasant experience but far, far better.  This revealed that I had DD and to be honest it was somewhat of a relief to know what was causing the intense pain, etc.  On the down side I was only given a small leaflet saying eat more fiber and not what to do during a flare up except go to my G.P. for antibiotics if the pain carried on for over 3 days.

I felt I was "left up in the air" so to speak with hardly any information and started looking online.

Recently I had a major flare up and was put on antibiotics for 7 days (Metronidazole) by my G.P. which did help but I still felt after finishing them as if the pain was just "lurking in the background". 

My life seems to consist now of watching everything I put in my mouth, also I had a peanut allergy and have to be checking everything for that.  I feel so stressed by all this and I really believe that isn't helping. 

If anyone has any advise they can give me I'd love to hear from you.  I have read lots of your posts and they have really helped me already.  Before coming across this forum I felt so isolated with this problem and it's good to know I'm not on my own really but I'm still finding it hard to cope at the moment.

Lainie1

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  • Posted

    I really feel for you & totally know what you're going thro'. I had several attacks before being diagnosed. Barium enema as you say n it pleasant but saw what was there, I also had failed colonoscopy due to the intense pain. I have just had another attack, 2 days in hospital on IV antibiotics & now 10 day course of oral. Like you I never feel as tho it has cleared up completely, the pain is always ' on the edge' of returning. I have found that I can mostly keep a lid on it by watching my diet but it seems that different foods trigger different people. 

    I am on low residue diet at mo' which I googled & found lots if good info. There are also couple of good Facebook groups that have fabulous, fellow sufferers x

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    • Posted

      Thanks for your reply.  I am trying the low residue diet which I found online. I keep thinking of all the years I'd been able to eat anything with no trouble at all then suddenly....all change!

      Could you let me know what the Facebook groups are please and I'll take a look.

      Hope you feel better when you've completed the antibiotics.

      Lainie1 x

       

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  • Posted

    Hello Laine ,you sound as though you are stressed to bursting point  I started a

    forum called Divi Diners which covers lots of your problems with what to eat and also avoid, from fellow sufferers. I don't think  you can access this forum on Facebook,but I don't really know 

    one thing that we all seem to agree on, is that stress is not helpful with D.D

    but you might find that  "chatting " to  fellow sufferers will help  a lot !!!

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