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felling down :'( what next???

Posted , 3 users are following.

jo19531
jo19531

So my colonoscopy yesterday was normal, just spoke to consultants secretary and last week's small bowel barium was also normal. I've been told that once I've had the hydrogen breath test if that's also normal I will not be asked to go back to clinic. I feel so fed up, angry, down sad What else could have raised my fecal calprotectin level if it isn't IBD? Could I have had something else? I'm sick to death of getting nowhere with this. It's gone on for far to long, the pain, the diarrhea, the joint pain.....I just want to know what could be causing these symptoms. I've lost weight again as I can't eat anything without it going through at lightning speed/vomiting it back. I'm now down to 7st 12 and it's not a good look! I hate my body, just feel so so down :'( Sorry to rant folks x

0 likes, 7 replies

7 Replies

  • stace224
    stace224 jo19531

    Posted

    Just want you to know that you're not alone in feeling this way. Going through same things andand similar symptoms and everything and pretty much getting the same answers as you. Im going back to the hospital on Tuesday and have a feeling that they are going to discharge me. All good if I was well but not feeling wel.
    • jo19531
      jo19531 stace224

      Posted

      Thanks stace, I hope u have more luck than me sad
  • IndieHannah
    IndieHannah jo19531

    Posted

    Hi Jo

    So sorry to hear your news....I really feel for you.

    It took over five years to get to a diagnosis for me and involved two near death experiences!!....When I was told that all my symptoms were down to depression I fell about laughing.....I, like you, couldn't eat anything without it going straight through...I lost a lot of weight...my life was sh*t!!!  Then I had such an acute episode I was hospitalized and I ended up having an emergency laparotomy where it was discovered I had extensive Crohn's activity in my small bowel, in the Terminal Illeum.  

    This particular part of the bowel is notoriously difficult to see by the traditional Barium Enemas and meals.  An MRI scan may show something, but in my case it has only ever appeared with any clarity with a Small Bowel Barium Enema. This is a pretty horrible procedure but worth it to get a diagnosis.  Its a tube passed up your nose then down your throat and into your stomach and through to the small bowel. The barium is then fed directly into the small bowel and the reason its more acurate is because the Barium doesn't get diluted by gastric acid like it does with the Barium Meal.I'm not sure why this procedure isn't used more often for difficult cases, maybe if I'd had it earlier in the investigation process treatment would've started earlier and maybe I would've been able to live a more normal life with all my bowel in tact!!!

    Don't give up Jo, it must be so hard for you and if you can, ask your consultant for these investigations before they give up looking.....but most importantly...rant when you need to and remember that you really are not alone.....

    PS.....have you tried white rice and fish....simple food but may have more chance of staying inside and giving you some nourishment.

    Take Care

    • jo19531
      jo19531 IndieHannah

      Posted

      Thank you, I'm so sorry u had to go through all that! I know it can be difficult to diagnose, I'm just scared of being written off and left this way. I'm suffering so much with pain in my right side still. If I ever get to see her again I will be demanding a CT scan first I think. If that shows nothing I will go on my merry way!!
    • IndieHannah
      IndieHannah jo19531

      Posted

      Hey Jo.....just to say I had the CT Scan....showed absolutely nothing eventhough the bowel was in a state.....the scan was just before the emergency op!!!.....

      I really hope you get some answers, but if you don't, find some alternative therapies or books that can help you manage the emotional fall out of being so unwell.  and be as kind to yourself as is humanly possible

       

    • jo19531
      jo19531 IndieHannah

      Posted

      I know I sound like a whinging idiot, it's not that I actually want to be told that I have UC or Crohns and I'm so pleased that they found nothing sinister, but, I don't see how I can have been ill for so long and everything be "normal". If the consultant had never mentioned the raised calprotectin levels and IBD I wouldn't be so het up, but to be told that, then told you will probably be discharged has really upset me sad Ive had this pain in one place for half my life, 2 hospital admissions for it with iv meds and still no answers. Just a whole lot of notes saying Regional Enteritis. Then discharged!! It's almost laughable. It's go on ur way Jo and live in pain. Do they have any idea what it's like to poo so many times a day, or to crawl out the toilet after going cos ur in agony? Do they have to take immodium to leave the house? Or cancel social events cos they get embarrassed about eating and vomiting 2 hrs later? I very much doubt they have ever had to beg to use a toilet in a shop or run like a loon to the nearest toilet praying they make it! I'm so upset and so angry but apparently all of that is "normal" :'( x
    • IndieHannah
      IndieHannah jo19531

      Posted

      I hear your pain and so relate to it.....all you want is a diagnosis so that you can feel legitimate in your illness!!!  Which may sound odd but its perfectly normal......its awful being brushed off when you are so consistently poorly.  And its really hard to get any real support if you dont have a name for whatever it is youre suffering from.

      All I will say is that getting to a diagnosis is one thing....but even then you still have to live with the poorly bit....only at least with a diagnosis you can get treatment (whether it works is a different matter!) and people are generally more thoughtful and understanding.

      If its any consolation, all those symptoms...the cancelling social stuff...the loo...the pain etc all happens here too.  I've had to tailor my life to contain my illness.  And although I don't always like having to live by the disease....I have found a way to manage and actually enjoy my life....even with all the pain and SH*T.  

      I hope you can find your way through this

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