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Crohn's no one believes your actually ill?

Posted , 2 users are following.

nicolaisla
nicolaisla

I have had Crohn's now for about 8 years, several flare ups, never completely controlled. I am on azathioprine and humira injections but in the middle of a really nasty flare up now with eurthrma nodosom lumps too. I was just wondering though how people deal with people not believing i'm actually ill? I've worked all the time I've had this disease but now had to give up my job as just couldn't cope with needing the loo 10 times plus a day and the pain and fatigue. I just feel that because I look ok on the outside no one believes me. My friends just think i need the toilet a lot and often make a joke about it. I recently told my friend I was worried about having a colonsocopy because of the amount of blood I was losing and she completely ignored it and started talking about something else. Just makes me feel very lonely. Guess it has to take someone actually going through the same experience to understand? Just wondering how anybody else deals with the non believers?

 

0 likes, 5 replies

5 Replies

  • claire73732
    claire73732 nicolaisla

    Posted

    Hi nicolaisla.

    I am really sorry to hear that you are so unwell at the moment. I have been suffering like you for about 20 years. People and "friends" can be funny. I put friends in " marks because anybody that is a real friend to you would understand your concerns and illness. I have spent many many years thinking about what others might be thinking and taking there comments and jokes to heart. I have had to cancel many social activities because of vomiting and fatigue but real friends understand that and don't make jokes that make you feel uncomfortable. Like I have you are learning who your real friends are. Have you had the colonoscopy yet? They are nothing to worry about I ask for sedation and don't remember a thing. Hope you feel better soon.

  • nicolaisla
    nicolaisla

    Posted

    Thanks Claire

    Always good to hear from someone who understands although I'm sorry you too suffer from this awful disease.  I've had a couple of colonoscopies before so not my first one but I've not had so much bleeding before it really is a lot. I also opt for as much sedation as I can have. Best part of it lol. I know it's a lot to expect people who have no knowledge of the disease to understand what it's like but a little sympathy from friends wouldn't go a miss. Of course I know it's not the most pleasant thing to talk about and my friend just says it's gross if I mention anything about toilet activities.  I've also once had a comment from a trainee nurse that I was too fat to have crohns.  I just hate the ignorance I guess.  X

    • claire73732
      claire73732 nicolaisla

      Posted

      Hi nicolaisla.

      I too went through a phase of loosing an awful lot of blood but because my ulcers are in the bowel they put it down to this when they did my colonoscopy I have another one to soon. As for being too fat I was 18 stone for a long time and I have only started losing weight in the last 2 years so that's rubbish and for a nurse to say that shows ignorance. I agree it's not a nice subject to be discussing but I believe there are people who stay quite because it's embarrassing but are suffering like us. It sounds like we have quite similar experiences. I am infliximab and steroids at the moment but prety soon I have to decide about an operation leaving me with a colostomy bag because I have had most of the treatment available. Hope you get strong soon x

    • nicolaisla
      nicolaisla claire73732

      Posted

      We do sound very similar.  I was just over 18 Stone went down to 16 stone around diagnosis now I'm down to 13 stone but that was through to going to slimming world. I've pretty much tried all the meds too. I had azathioprine but it affected my liver and had to stop then I tried it again with allopurinol and it worked.  I also was giving myself the humira injections weekly.  When I was doing slimming world I was so well I thought I was cured and stupidly stopped all medication and of course it came back with a vengeance so I'm just trying to build up the meds again.  I've been offered the dreaded colostomy and was almost booked in but for me this is the last straw.  I've heard many stories about how wonderful it is but we are all different and for me I just know I would find this difficult to deal with.  Poor you though if you have suffered for 20 years with it. I've been diagnosed for 7 years but had it a while before then too. How do you feel about the colostomy?  Do you feel it's your only choice left now?
  • claire73732
    claire73732 nicolaisla

    Posted

    Wow down to13 stone that's fabulous well done. My husband is against the operation but it really is the last option. I have tried humira injections and methotrexate tablets. The operation scares me but I have heard such good things but have also heard some horror stories about it going wrong and not being able to reverse it.
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