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Newbie possible mild crohns advice?

Hi all just found this forum and thought I'd put my story out there to see if anyone can enlighten me further. I've always suffered with my stomach and it's gotten progressively worse as I got older, I had a colonoscopy 5 years ago that was fine nothing found so was diagnosed as IBS. Last year my symptoms got worse almost over night, pain, bloating, fatigue, headaches, sickness, bloody/mucus diarrheah, acid reflux ( not sure if linked) I can't take any form of inflammatory med as makes my bowel bleed and I have certain foods I have to steer well clear from, so went back to my dr who referred me to the gastrointestinal to have more tests as a possible crohns UC ( my sister has UC too) dr has done bloods which showed an elevated white blood cell count, but nothing else CT was fine and they found ulcers in my terminal ileum, however he said there is nothing wrong possibly mild crohns but he refuses to give a firm diagnosis he said there isn't enough evidence? Which left me very upset and confused as to what I fact is actually wrong, hie also tried blaming campylobacter which I got hospitalised for in November although I was on referral to him from back in July/august. He said as the CT scan showed clear of inflammation IBD is unlikely, but if I was in remission at the time as not having any symptoms would it have shown? I'm currently undergoing tests now for arthritis also as my joints have all gone to pot, sorry for the ramble mush mash but just wondered if anyone had had anything similar and could shed any light as being told to just live with it when your not able to get up on a bad day just doesn't cut it! I'm also going to be having an ultra sound for Gaul stones, I'm almost 100% that I don't have these I think he's just testing me for the heck of it. Any advice or experience would be greatly appreciated :)
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Nicki!

Whoa. Blood in your bowel movements and ulceration in your TI, and your doctor says nothing is wrong? Please find a new GI immediately. This one is not helping you. You need a diagnosis and treatment.

Was the campylobacter fully treated and cleared up?

A clear CT scan definitely does not rule out IBD. Inflammation may not show up on a scan - scopes are far more reliable. Have you had a colonoscopy done recently? If not, you need one - and make sure biopsies are taken.

Joint pain is not uncommon with IBD. The inflammation is simply affecting your joints as well. If you do have IBD and are able to put it into remission, the joint pain would go away as well, if that is the cause.

:hug: I hope you get answers soon, Nicki!
 
Hi Sarah, thanks for the reply :/) yes the campylobacter cleared up fully I was hospitalised for 5 days back in November having been referred to my GI in August :-/ I've had bloods, CT scan and colonoscopy and endoscopy with biopsies, which is where they found the ulceration in my TI. Everything came back from my arthritis tests normal today so I've no clue what's going on and just feel really in the dark, I did bite a but at the GI and asked him if he would be happy to have my symptoms for a week when it's bad! I'm just fed up with not having a definite diagnosis because I'd have somewhere to start from
 

theOcean

Moderator
If you've had all that testing done and still no luck, I'd definitely consider what Sarah said and look for a new GI! Because it definitely sounds like you have enough proof for a diagnosis - so it may just be the result of an unreliable doctor. :/

EDIT: Also if they're doing tests for arthritis: the reason that may have come back negative may have been because joint pain is also associated with Crohn's/Ulcerative Colitis! That's one of the symptoms I get when I'm in flare.
 
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