suspected chron's - bit shocked and confused

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Hi all after 9 years of hi ridiculous pain which has always been put down to "lady bits" I've been back to the gp yet again today

bit of history. Collapsed in 2006 and discovered PID

had 4 x laparoscopy 2 were investagative, 2 were removing adhesions and checking for endometriosis

Stint in hospital last year due to an unidentified mass on RIF

Periods of pain and remission throughout

all flared up again and feels same as last time when I was admitted to hospital. Palpable mass on RIF region.

GP decides today that (a) I need another scan and (b) colonic opt as he thinks it could be chron's

My first thought is nah it can't be. My friends mum has this and I saw her in some of her worst periods of illness and I can't honestly say I relate

don't get me wrong it hurts like hell but i'm really confused and obviously don't want to Google too much and scare myself silly!

Anyone been thru similar? And any advice please?

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10 Replies

  • Posted

    Colonoscopy not colon optic haha Damn iphone
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    • Posted

      hi there

      I went to the gp to ask about intense pain in the abdominal on the right side my gp decided it was too high to be endometriosis, which i was already diagnosed with, and I had to take a calprotectin test (poop test). This came back as elevated so they sent me for a colonocsopy (the worst part is the prep don't forget to apply vaseline.) My colonocsopy was clear and I was subsequently sent for an mri scan of the small bowel. This was also clear. They now are very doubtful of crohns But i am to have my calprotectin levels checked once more. In the meantime I have finally got some one to listen to me about endo. My right ovary was stuck to a muscle and I had endo on my bladder.

      I google the symptoms of crohns and altho I didn't match many of the symptoms I was constantly nervous and checking for them.

      So basically don't do what I did and freak yourself out lol and until u get that diagnosis for sure try not to worry (unlike me haha )

      Good luck x

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    • Posted

      Thanks sometimes I think they're just offering tests to get rid of me but this is same gp who a yr ago told me it was just something I'd have to live with I have Googled diet so gonna make a few minor adjustments and see if anything helps. I've had so many diagnoses now I believe nothing till it's confirmed. I didn't have endo and knew I didn't but they insisted on operating to check!
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  • Posted

    Hi I know the pain is really really bad at times do you have diarrhoea a lot that can sometimes be like jelly stuff I also vomit a lot sometimes with no warning not everyone with crohns will have the same things going on

    so although your palls mum has it she might have different symptoms

    of this.I know how you feel as I had problems for over 35 years I also had a histerexophy about 25 years ago. Since that I never been the same it

    took years for me to find out I had crohns I been told I has IBS UC IBD now crohns and am sure the doctors at the hospital will change there minds again I had a bad flair up two years ago and lost 6 stone in about 3

    months I was going to the loo about 30 times a day and at nites so

    good luck and keep at them hope I help a bit

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    • Posted

      Hi Susan yeah I know everyone is different and tbh from what I know I think if the gp is right then it's got to be mild. I rarely have diarrhoea in fact I'm the polar opposite. I'm struggling to comprehend where the idea has come from and also with what it will mean if he is right. Absolutely agree with your other posts though whatever I have the pain can be worse than child birth when I'm on a bad day.
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  • Posted

    Hi I suffered from constipation for years before I got crohns. I could go for about three weeks without going to my palls were shocked when I

    said that but that was just normal to me until one day I had the cramps

    but whatever I ate or drink it just came back up I was like that for two day

    my boyfriend said u need to phone the doctor so I did he told me to go

    right up when he seen me he sent me straight up to the hospital as he

    thought I had a blocked bowel I was sent down for a colonoscopy and that's when they told me I had UC but now its went into crohns hope this

    help you good luck

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  • Posted

    Hi,

    This all can be really difficult I know and I'm sorry for what you are going through. I do remember going through something similar including the removal of adhesions. My only advice is to not give up seeking the proper treatment that you need/deserve. I know that sometimes it can be hard for them to decipher between the two given that the symptoms can be similar but until they do proper testing you will be left not knowing. I know that reading up on these health issues can be stressful but if and when they dx you you might find it helpful. I really hope that you get things sorted out soon. Good luck

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  • Posted

    I had bouts of horrendous pain for 20 years & despite numerous tests had been told it was "just" IBS. Two years ago I had a really bad flare up but didn't see my GP until the worst was over. It left me with chronic diarrhoea which I lived with for 6 months. Finally I went back to him & given it wad a previous GP who had referred me for tests he decided to start all over again. 4 months later the consultant who told me I had IBS (6 years before) told me I had Crohns! That I had 3 severe strictures and needed surgery. I wasn't ready for that and wouldn't consent there and then. After a MDT meeting they wanted me to start infliximab instead which to me also sounded a scary prospect. My blood levels were rubbish - b12, hb, ferritin etc so I asked to get those sorted. Had IV iron, b12 jabs etc & trying to incorporate low residue diet into a healthy one. 14 months after diagnosis, no surgery, no drugs just 6 monthly(ish) check ups. I wholly believe my gut was reacting to me being so anaemic. My bloods are now holding up and my bowel habits on the whole normal. If I do feel pain starting due to partial blockage I take buscopan & sleep! Good luck, none of us are the same.
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  • Posted

    Thanks for everyones comments. Good to know I am not alone. I don't have my USS for another month and they won't schedule anything else till after that. But I'm getting desperate and spoke to a friend of mine who has a relative who has struggled with similar and after one week just ONE of cutting wheat out of my diet my bloating has eased I've got no pain and having normal bowel movements. Coincidence? Maybe but i'm willing to keep it up for a month then try wheat and see what happens!
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  • Posted

    Hopefully everything goes well and that you might have found the answer you have been looking for.

    Good luck.

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