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Help feeling scared

Posted , 7 users are following.

millie1986
millie1986

Hi everyone ive had bleeding since last year and mucus. I'm at the toilet all the time blood in my stools

I've had my bloods done several tomes no sign of infection or anything. I had a flexible sigmoidoscopy in January and they said they were sure I had UC due to my bowel being very inflamed

They then wanted to check my full bowel. Two weeks ago I had a colonoscopy and was told I'd get a letter out to make an appointment within Afew weeks and they would tell me my results.

This morning ive received. Letter but it said they need to do firther investigation.. Obv another colonoscopy..

I've no idea why! I literally know nothing and now I'm sitting worried. I am so scared because I know they took pictures last time and biopsies. The letter was sent first class.i thought I would have been done with all of this and im now thinking the worst. I have always thought it won't be great news but I'm just stuck n back to square 1. What else are they looking for? They have already done biopsies the first time they came back inconclusive.. Hence the colonoscopy.. Now ive no results but a letter to contact them

Please tell me there's others that have had this.thank in advance. Xx

0 likes, 18 replies

18 Replies

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  • jill18833
    jill18833 millie1986

    Posted

    Hi Millie,I know it's hard but try not to stress as it will make things worse. I should imagine they are trying to differentiate between UC or maybe Crohns but have they started you on any meds? As the meds are similar for both conditions it seems mad not to get you on steroids/Mesalazine or similar? Could you ring your consultants secretary to see if you can be prescribed meds while you wait? If not I would talk to your GP to explain you are struggling? Xx
    • sarah63945
      sarah63945 jill18833

      Posted

      Hey

      Try not to worry it won't change anything u will learn that in time it's just not worth it.

      They are probably just wanting to make sure they get your diagnosis right I'm sure it's a complicated disease.

      Big hugs let us know how u get on xx

    • millie1986
      millie1986 jill18833

      Posted

      Hi Jill thankyou so much for your reply, I'm a 29 year old fit n healthy girl. This is ruining my life im so tired all the time

      They gave me mezaline suppositries in January and they did work a bit but made me constipated..

      Then they gave me the foam saloflak which was so horrible and sore and didn't work

      Now I'm on mezavant xl the tablet two in the morning and they aren't workibg either

      I'm just now so scared as I thought that's why they were doing the last colonoscopy to see if it was crhones or not.

      I can't call anyone because it's a Saturday so I'll need to wait until Monday. I don't think I'd feel as bad I'd I got the letter through mod week as I could have delt with it ther and then

      I'm so sorry your going through this too it's just like none understands

      I'm just so fed up with this now I feel like I'm starting back at square one this had been going on since last November back and fourth hospital doctors you name it

      I went to the supermarket and treated myself to a nice bottle of prosecco because that's the only way I'll get through this weekebd

      Thankyou so much for replying im at my wits end

      I've just read this back and I sound like a maniac

      Anyways I really am grateful xx

    • millie1986
      millie1986 sarah63945

      Posted

      Thankyou sarah

      I know my stomach has been in knots since I got the letter

      I can't change anything I just feel it's another set back

      I really appreciate your advice and replying to me it really means a lot that getting support as it's just one thing after another

      I'm so scared

      I'll let you know what happens

      Thank you again xx

    • jill18833
      jill18833 millie1986

      Posted

      Hi Millie,sounds like you might need a course of steroids to bring it under control or steroid enemas? I would ring secretary Monday morning and hassle for advice/prescription. If not go to GP ,the sooner you get the meds the better you will feel,keep in touch x
    • sarah63945
      sarah63945 millie1986

      Posted

      Sorry just got into the internet. Can I ask you a question you mentioned you had tried salofalk enemas? I'm on the liquid ones but been given the suppositories to try and they burn inside for a bit is this what u had?

      I'm 35 and i used to panic about my condition all the time but last year I had some counselling after losing my grandparents and it helped a lot to analyse life I found it helped a lot.

      Here if you need anything x

    • millie1986
      millie1986 jill18833

      Posted

      Hi Jill im going to call first thing on Monday and get an appointment with my doctor.. I don't know wether he has results from my biopsy and they maybe think ive been to see him and he has told me and now I need a colonoscopy? I'm also going on holiday in 3 weeks time and really wanted all this behind me. I can't do anything until tomorrow it's just rubbish because its a waiting game and im worriwd.. X
    • jill18833
      jill18833 millie1986

      Posted

      Hi Millie,yes,def get appointment and ask doc if he has results or if he hasn't,ask if he can speak to consultant or secretary? Also make sure they know you are having hol in three weeks and need some help. When I was diagnosed(2 years ago) I was in a mess and also had hol booked for two weeks time! I had Mesalasine tabs and enemas and within 2 weeks felt so much better. Still think you need course of steroids which work very quickly so try not to worry. Let us know how you get on x
    • millie1986
      millie1986 jill18833

      Posted

      I am in Scotland so I don't know how it works where you are ?? you can call at a certain time for results but that's just for bloods etc. but my results get passed on to my doctor and they keep them on file. but I was suppost to get a letter telling me about a hospital appointment to see my IBD nurse to go over my results from my colonoscopy

      Instead ive got a letter in saying they need further investigation to my stomach/bowel.. Which is why I'm so worried im beginning to think this is more serious than I thought

      I'm trying to stay positive but it's driving me insane. Plus all these tests it's just a nightmare. Unless your going through something like this then I don't really think anyone understands. My parents came round to see me last night j just fobbed then off I don't want anyone knowing just how worried I am xx

    • millie1986
      millie1986 sarah63945

      Posted

      Hi sarah yeah I have the enemas b they do burn

      That's such a shame sarah it's really difficult isn't it

      People have no idea how tough this is

      My main thing is I'm just exhausted all the time but I do work full time keep a house and exercise xx

    • millie1986
      millie1986

      Posted

      Hi Jill they mixed up my letters

      They said it was an admin error I can't believe it

      I was at the docs and called the hospital they had NO note of me even going for my colonoscopy

      More bloods today just fed up now xx

    • millie1986
      millie1986 sarah63945

      Posted

      Hi sarah my appointments letter was a mix up I can't believe it

      They apologised and it didn't stop the worry but at least I know I'm ok

      Got more bloods done today this is never ending xx

    • jill18833
      jill18833 millie1986

      Posted

      Hi Millie,unbelievable the errors the Nhs makes,doesn't inspire you with confidence eh? I believe we have to be 'on the ball' the whole time and keep chasing results etc. At least your mind is put at ease .....eventually! Keep in touch x
  • missey_woo
    missey_woo millie1986

    Posted

    You have my sympathy, waiting is horrible and adds to worries which definitely doesn't help your symptoms sad

    I take mezasalazine too. When I was first diagnosed I was prescribed 4 tablets once a day, they worked really quickly! I was on 4 for about 5 months then reduced down to 2 as a maintenence dose. Maybe you need a higher dose. I would go to your Gp and explain the medication is not working.

  • Ashley07
    Ashley07 millie1986

    Posted

    Hi Millie

    My husband has been in a bad flare up since October time, since then he has been on and off steroids and is still no better. He does take mesalazine daily but now his nurse thinks they are no longer working. However I do think you should speak to someone about getting a dose of steroids as they seem to sort most people, my husband has been the unfortunate one where they have made no difference. He's been extremely tired for the last 6 months and has had 2 iron infusions as he was aneamic. Have you had your iron levels checked? We see his specialist in a weeks time about changing his medication as it has went on long enough now. I hope you get sorted soon it's such an awful illness at times.

    • millie1986
      millie1986 Ashley07

      Posted

      I've not had any iron or anything checked since February.

      I know a lot of people say steriods but ive really not wanted to take them because ive heard of weight gain and other side effects!

      I hope your husband is ok I really feel for him xx

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