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Need to Know.

Posted , 3 users are following.

jacqueline01135
jacqueline01135

Is it a foregone conclusion, that , if the colon/bowel  keeps suffering perforations and abscesses, that surgery is inevitable ?

How do we find out how  ,many pouches have developed  ? Where they are ? and why consultants ,doctors, surgeons,, are so reluctant to disclose this information ?

Last but not least ,where can we go to ask questions. i find this a stressful disease. through not being given sufficient information .

0 likes, 17 replies

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  • susan95516
    susan95516 jacqueline01135

    Posted

    My DR told me I had multiple DD in the left side he saw them on colonoscopy. When I had my sigmoidoscopy on Thursday I was shown a few in the bottom of my colon   My consultant is very good at explaining things I just think they don't know much about DD   In the UK they  don't operate unless you are really bad. But it's different in the US they seam to operate more often 

    • jacqueline01135
      jacqueline01135 susan95516

      Posted

      Hello susan, sorry about the delay, but my laptop has been giving me the run around . I had a sigmoid----- done by a nurse ,which I was not happy about, quite rightly as he hardly made any progress up my colon. I asked some questions about what i did see,but got no answers, 

      he did say that there were a few polyps ,but he had not removed them, which I understand is normal practice .I was so concerned about what did not happen, I wrote to a consultant who said "Nothing sinister had been found" So, I still know nothing about the state of my colon, or it's present condition. and, no one to ask. Did you go through your G P for the private colonoscopy.?  Sounds like a good idea.

    • susan95516
      susan95516 jacqueline01135

      Posted

      I was led to believe that polyps are always taken out I had one removed. I am in the NHS and must admit I have been treated really well   I did pay to see a consultant but told him I couldn't pay for treatment so he put me through the NHS   My GP is also really good I can phone up and see them anytime. 

    • susan95516
      susan95516 jacqueline01135

      Posted

      Leeds West Yorkshire   St. James's hospital. I went to the oncology part of the hospital to have both procedures and the staff couldn't do enough for me x

    • jacqueline01135
      jacqueline01135 susan95516

      Posted

      Now I understand,, best hospital in Yorkshire, sadly .not mine. I lived in Southern Ireland for a few years,and the health service there is unbeatable 
    • jacqueline01135
      jacqueline01135 susan95516

      Posted

      outskirts of Sheffield .I used to know Leeds quite well. but I would think it is now unrecognisable ????
  • pwk
    pwk jacqueline01135

    Posted

    Not sure where you live but in the US,you have a colonoscopy and they give you pictures and details of exactly where your pouches are. In the acute stage they do a CT with contrast that also tells you exactly where the affected area is.
    • jacqueline01135
      jacqueline01135 pwk

      Posted

      I'm in the U.K sadly. Where we are given nothing, except a diet sheet .Which apparently is now of no use, as I have recently been told by a surgeon, that food has no bearing on the cause of flares ,or infection .He just said if I get pain ,get help !!!!!

  • susan95516
    susan95516 jacqueline01135

    Posted

    I live in the UK and I got images of all the diverticula I have but was told to go see my GP if I needed anything and have a colonoscopy in 5 years. I paid to see a consultant who sent me for a sigmoidoscopy and took 4 biopsys he think I have IBS and possibly Colitis 
    • jacqueline01135
      jacqueline01135 susan95516

      Posted

      Which hospital are you being looked after ?? So well I might add. We don't have insurance as such, as you know ,the N.H.S is our insurance, which we all pay for during our working lives,. those who are better off ,do invest in private health insurance , so they will get better treatment. and faster,  You seem to have a load of problems with your digestive system, As far as I am aware, I just have the D.D which is more than enough. do you take any meds ??

  • pwk
    pwk jacqueline01135

    Posted

    Wow, it's very different here in the US we get these tests as part of our insurance care. It's funny more folks should hear how healthcare works in other countries and thy may understand why most folks in the US are against that kind of healthcare. Good luck with your diagnosis, I have been struggling with this for a year and trying desperately to avoid the surgery they have recommended. 

    • jacqueline01135
      jacqueline01135 pwk

      Posted

      Sounds as though you are well taken care of, for which you pay, U.K residents have to rely on the N.H. S . We get tests only when things are really bad. I do know that I have D.D and endured and coped with it for about 4 or 5 years, maybe longer. It's the lack of information that is hard to deal with.  My concern is the possible inevitability of surgery, and maybe having to endure those god awful bags.   

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