1. Community
  2. Gut, bowel and stomach
  3. Crohn's Disease

unwell and scared!! can anyone help?

Posted , 7 users are following.

melanie16925
melanie16925

Hi, I was looking for some advice. I have been suffering from bleeding/mucas in very loose stools (I'm going to the loo about 6-10 a day - very urgently sometimes within a few hours of eating), gas/bloating/lack of appetite/cramps/low energy every day for about 5 weeks now. The only way I am finding I get any relief from these symptoms is to not eat - adding to the tiredness. I have been examined by a GP who could not find any hemmoroids/tears to explain the bleeding/clots (there is quite a lot/mid red colour) so referred me for blood tests (full blood count/kidney/liver function/imflammation). These came back last week as 'satisfsctory'. I am now waiting for a colonoscopy appointment. I'm scared as I've never had one before. I suppose I am asking 1. What should I expect at the colonoscopy and 2. In your experience are my symptoms anything like chrons/colitis or am I totally barking upthe wrong tree? All I know is that something is wrong and I'm not sure how best to help myself - other than not go too far from a toilet!! Plus im wprried as my blood tests have come back ok that the colonoscopy wont find anything either. Any advice gratefully received. I'm a woman aged 33. Thanks.

2 likes, 16 replies

16 Replies

Next
  • NickiT
    NickiT melanie16925

    Posted

    Hi Melanie. I'm 40 & I was finally diagnosed with crohns 2 years ago. I'd been poorly for a while, had lots of tests but it was the colonoscopy which finally highlighted the problem. I had an endoscopy and colonoscopy on the same day, and if that's not bad enough... I had them done on a Xmas eve!!! I was desperate for answers and just wanted to know what was wrong with me. Out of both, I found the colonoscopy the easiest. I had an injection to relax me and it did work, surprisingly. The endoscopy wasn't nice but I found the colonoscopy quite interesting (probably because I was a bit chilled) but I watched it on a TV screen. Am I weird??? 

    Symptoms are different in different people. I've got Crohns in my small bowel, I was going to the loo a lot, and I'm still getting tremendous pain but I've never had blood in my stools. My friend had colitis and she gets a lot of blood but no pain???  

    • melanie16925
      melanie16925 NickiT

      Posted

      Hi Nicki, thanks for your reply. I'm not sure what is wrong with me but am really getting sick of being sick! Your comments about the colonoscopy have made me feel a little better about it. I will definitely be having the sedation. I'm such a control freak I'd probably like to watch the tv too! I'm not sure if I may have crohns or maybe colitis. I only really have pain after I have eaten, this usually goes after I've been to the loo (this has been quick and urgent) but other than that I'm pain free. I do feel bloated most of the time. I guess I just have to wait for the procedure and see from there. I was just worried that as my bloods thus far have been 'satisfactory' that I would be wasting everyone's time researching crohns/colitis as they should have shown some kind of inflammation if it was either. Whatever I guess there is something wrong with me so we'll see! Thanks for the reply and I hope you stay well. :-)
  • NickiT
    NickiT melanie16925

    Posted

    Sorry, message sent before I'd finished......

    I just saw the colonoscopy as a means to an end, and something I just had to do to find out what was wrong. The determination to find out was stronger than the fear I felt in the end. Straight after the procedures, they gave me azathioprine and presnidone (steroid but can't remember how to spell it) and I did start to feel better within a few days. 

    I'm no expert on Crohns or UC but your symptoms do seem to sound like IBD. The best way is to get these tests done and get medication as soon as you can. 

    Good luck and hope you get sorted soon,

    Nicki

  • NickiT
    NickiT melanie16925

    Posted

    From my experience, the bloods don't really tell a great deal. It's the stool sample which will have more answers! ☺️
  • NickiT
    NickiT melanie16925

    Posted

    They test for indicators in your stool, not sure what it's called. I think these markers should be in the '60' range...when I was diagnosed mine were in the 1600's. That's some serious inflammation, and it didn't show in my bloods!! X
    • melanie16925
      melanie16925 NickiT

      Posted

      Hi Nicky, yeah I had to send in a stool sample too. I called my GP for the results and was told by the receptionist that there was nothing to worry about in it. She said as far a she could see it had tested negative for something (I'm sorry I can't remember what) and that was all that mattered. I think that, plus the bloods, plus the appointment for the scope still not being though and these symptoms are still here and going into the 6th week I'm going to call my GP on Monday and ask for an appt to speak to my GP and chase up the scope appt. I've had enough of waiting! Thanks again :-)
  • NickiT
    NickiT melanie16925

    Posted

    You need the colonoscopy. My GP is great but he said I'd got IBS, then he sent me for a barium - but that showed up nothing as it only checked my large intestine - so then I had the endoscopy & colonoscopy. And bingo....Crohns was there for all to see!!

    It seems to take forever to get these tests done and all the while you feeling crap and worrying yourself silly!!! You need to stand your ground and demand, unfortunately.

     

     

    • melanie16925
      melanie16925 NickiT

      Posted

      I think I'm going to have to. I can't carry on like this to be honest. I thought I'd cracked it a bit today. Had some white bread toast this afternoon and some white pasta with pesto this evening. Way less trips to the toilet but now feel so bloated I can't breathe. Have a pain in my lower right hand side too. So as it seems frequent toilet trips or painful bloating are my choices when it comes to food I'm totally calling the GP Monday. thanks for letting me rant - I'm sure you know better than me how much feeling crappy just gets you down. :-(
  • NickiT
    NickiT melanie16925

    Posted

    Not wanting to scare you but I'm seeing my surgeon on Monday as I've got to have a resection. I'm living on rice pudding, mash and soup (not altogether though, lol) I'm sensitive to onion and can't digest much else at the moment as I have an obstruction caused by scar tissue. I waited far too long before seeing my GP, and with waiting for tests etc, having a high pain threshold and not wanting to cause a fuss...I made my situation worse. 

    I can't tolerate any veg or salad....I have basically eaten 'beige' food for years! Coffee, fizzy pop and fruit in any form make my symptoms worse.

    Sometimes you've just got to rant....it helps to know there are others that feel your pain and understand you. It's a cruel illness. 

    I hope you don't have Crohns or UC but if you do...forums like this are brilliant for getting info and advice. 

    Let me know how you get on. Lots of luck xxx

    • melanie16925
      melanie16925 NickiT

      Posted

      Many thanks and I hope Monday goes well for you!! Thanks for all your help and stay strong!!! 😃
  • AMaria
    AMaria melanie16925

    Posted

    I had similar symptoms to you minus the blood.  I was diagnosed 10 years ago aged 20.  At times I still don't eat, not for long periods but if I'm feeling particularly terrible one day I will skip a couple of meals and that almost always makes me feel better, I do make sure I then eat something substantial to make up for it.  My bloods always come back as normal as well, I've never had a stool test though I only heard of that very recently.

    Hasn't your GP referred you to a specialist?  If not then ask him to, GPs aren't great with complex illness, they aren't supposed to be.

    For the colonoscopy just accept that you have to do it and it's really not that bad, all the staff have done it a hundred times there is nothing to fear.  Plus you'll be away with the fairies!  As Nicki said, I found it fascinating watching on the screen!

  • TCC66
    TCC66 melanie16925

    Posted

    I have had UC for 7 years and was diagnosed with Crohn's yesterday after a 7 month flare up which is now under control thanks to new medication... I was apprehensive when I had my forst colonoscopy however, it was fine and nothing to worry about and I loved watching the screen - amazing looking at your inners on a flat screen TV... lol Good luck with everything!!!!
  • gemma54620
    gemma54620 melanie16925

    Posted

    Hi Melanie,I hope you are well? I am going through exactly the same as you! I was wondering if you have had a diagnosis yet?  Also, how long did you wait for the colonoscopy?  My GP put an urgent referral in for me around 3 weeks ago, but I've not heard anything yet sad 
    • christine58244
      christine58244 gemma54620

      Posted

      Hi gemma i went to see someone in the corectal dept back in May just had a letter to say another appointment at end of august to discuss when to get the colonscopy so will have been waiting 5 months, and the doctor told me he assumes its cancer and waiting 5 months very scared wonder if i will be ok just living day by day wondering what if my stomach is ok very worrying time feellike my life is on hold at the moment and from reading the horror stories of painful colonscopies its frightening
  • christine58244
    christine58244 melanie16925

    Posted

    i feel exactly the same unwell and scared too, i have had diarohea for 10 weeks, no blood but pain in stomach and very stinky poo nor normal, lost a stone in weight and feel very tired, 4 weeks since i went to the hospital for a blood test phoned doctor and he said probably 2 weeks to the appointment for colonscopy, my doctor also told me to assume its cancer, thats very scary i have been thinking i wonder how long i have left and how ill am i going to get very scared  now and i am 62  lets hope we are both ok and we get better
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.