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Crohns

Posted , 5 users are following.

decndor
decndor

I have suffered from crohns for 52yrs this year. I was diagnosed at the age of 25 and I am 77 this month,  During this time I have had the following. First off all when I first became ill they diagnosed appendicities, It was during the operation to rempove my appendics that they discovered I had crohns, I must say at that time I had never heard of this complaint.

​Three months later I became very ill and went down to six stone I was admitted into hospital where I underwent my first bowel resection. since then I have had a second bowel resection. An absses in the bowel which had to be drained, Two weeks in hospital with sepsis, Gallbladder removed.

​And around three years ago I had my left kidney removed since they found a tumor on it which they said was 85% certain to be cancer. Fortunately after six week wait to have the tumor tested it turned out to benign. I do not take a lot of medication for my crohns. I have three monthly B12 injections. I take cholestyramine for malabsobsion. And I am on citalopram a anti depressent,   I have recently started attending my local branch of the

​"Crohns & Colitis" society.  Here we meet fellow suffers. It is more helpful that going to the specialist. I would advise anyone suffering with either of thes conditions to check on the internet for their local branch of this society.

​Ours has a get togther every month for a social meet up. Well worth going.

​My problems at the moment are fatigue and tiredness all the time. and bloatedness in my stomach.  Stick in there Fellow sufferes there are a lot of new mdetications about which from talking to fellow sufferes is helping a lot

4 likes, 9 replies

9 Replies

  • Chrisor
    Chrisor decndor

    Posted

    Hi,  you have b even through the mill.    I have met other suffers who diagnose years ago say how difficult it was because people had not heard of crohns.  It is still hard but people like you are helping. When you are feeling low and depressed remember I said  you are needed and you are the greatest.

    chris

  • Bong1968
    Bong1968 decndor

    Posted

    Thank you for your inspiring post.

    I agree that you find more information from talking to fellow sufferers!

    l've only had Cohns for 28 years so still a novice compared to you! Ha, ha!

    It's a great idea about tending meetings. I may give it a go...!

  • Carolla
    Carolla decndor

    Posted

    I had surgery 31+ years ago.  I also have B12 & cholestyramine but I'm lucky I don't suffer from depression, well no more than for a 'normal' person.  I decided years ago I was entitled to be depressed and if I wished to wallow in self-pity that was up to me.  Don't ask me how or why, but I found giving myself permission not to be happy and jolly al the time was fine and I got back to 'normal'.  Once I accepted the Crohn's is mine, I can't give it away, sell it or lose it I got on with my life.

    The tiredness and fatigue has haunted, there are so many things I haven't done, or have attended and drifted off to sleep in a corner. 

    Do you feel irritated at times by people who have something wrong health wise who complain and moan and groan and you just think, do you a swap?

     

    • decndor
      decndor Carolla

      Posted

      I like your atitude towards this problem.  When you have suffered from it so long it becomes difficult to remember how it felt to be well and you kind of learn to live with it.  Do you feel any benifits from your B12 injections, only I have been told that some people cannot wait to have them as it lifts them. But I do not notice any difference. Keep that positive atitude.
    • Carolla
      Carolla decndor

      Posted

      Re your B12 injections, I know when mine are becoming due, I usually start getting extra tired and my voice gets a bit husky.  It's interesting you feel no benefit, I have even asked the nurse were they using a different brand because just once in a while they make no difference at all.  Years ago one injection really hurt and I complained, loudly.  Apparently they thought they had a duff batch but didn't say anything, just waited to see what I said.  Hmmm.

      Do you still see a consultant regularly?  I haven't for about 15 years, I rely on my GP which is okay.

    • decndor
      decndor Carolla

      Posted

      Hi, I have mentioned to the nurse, who gives me my injections, that I do not feel any benifits from them and she and others have said that I would notice the difference if I did not have them. whether this would be the case I am not sure. I cant believe that you have not seen your consultant for  nealy 15 yrs. I get a letter every 12months to attend the hospital. now you may not be feeling ill, but I have blood test every time I go.which has uncovered several unrelated problems over the years including the problem which resulted in me having my left kidney removed. it is up to you but I would get this situation changed, it is important that you are checked at least every 12 months

       

    • Carolla
      Carolla decndor

      Posted

      I have blood tests every 12 months and I am now old enough to be included in the bowel screening programme.  I wasn't too happy about it years ago, but my GP then (who has retired) was brilliant and really clued up about Crohn's.  I learned a lot from him.  My present GP is okay and I can phone the IBD nurses at the hospital if I need.  As I'm getting older I start to worry a bit more, what if I miss some tell-tale signs?  I did run it past my GP, he reckoned three months for a non-urgent appointment with a consultant, gulp, or two weeks and I'd be given steroids during those two weeks, but he felt I'm fine at the moment.  To be fair I get appointments for the nurse no probs for my B!2 and I can usually see my own GP within a few days.

    • decndor
      decndor Carolla

      Posted

      It sounds like you are being monitored well. you take and lets hope you have no more problems
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