Negative colonoscopy

[Sally123]

Hello I'm a bit new to this but I really need some advice!
I'm 24 female, restaurant manager and usually very healthy
Over the years I have had flares of what I just put down to ibs as years ago I was hospitalised because the pain was extreme and I had blood in my stools but after a day I was completely normal and I never looked back. However 5 weeks ago I had to go to a and e because I had extremely painful cramps and my tummy had bloated out like I was pregnant, i was feeling sick and they put it down to appendicitis following this they gave me an apendecetopy but it's been 5 weeks and my symptoms have gone worse, the pain is still there I have lost a stone in weight, my mouth is covered in ulcers, I can't eat only very light clear soups, I am sleeping all day and I have been off work for 4 weeks now as I can't bear to stand for more than 10 minutes. However today I had a colonoscopy and they reported back my colon was fine they also took some biopsy samples. I was quite certain I may of had crohns is there any chance it isn't shown on a colonoscopy and are there any other tests as I am desperate to get back to work but I still can't bear the thought that this could just be ibs and that I would have all this again one day surely ibs shouldn't make you feel this bad? And I'm thinking that this might just be a lazey diagnostic from my doctor ? Any one else had the same problems ??? Please I'm desperate to get to the bottom of this :ybatty::ybatty::confused2:

 

[DJW]

Hi and welcome. Sorry you're having a rough time.

Have you seen a GI specialist? IBS shouldn't cause weight loss or mouth ulcers. I have had mouth ulcers with a crohns flare.
Have you had your upper GI tract checked? Crohns can effect any part of the GI tract from mouth to anus

Sending you my support.

 

[Sally123]

I'm finding it extremely hard to push anyone to do any thing to be honest, after i was discharged from hospital my discharge letter just had on it refer for colonoscopy I.B.D suspected, i had to read that for myself in order to realise what was going on. How would i go about seeing a GI specialist and surely if my colonoscopy has come back normal they wont take me seriously? would a colonoscopy only show possitive for crohns if i was having a flare up? Thanks for your reply

 

[DJW]

Hi.
A colonoscopy only looks at the large bowel. If it's not located there it will be missed. In Ontario the GP needs to make the referral to a specialist. Not sure about the US. Mouth ulcers can still mean a flare.

 

[Cosmojo]

I would ask for a pill camera, that looks at your entire GI tract instead of just the colon- that is how my Crohn's was discovered as severe vs mild

 

[leezapeza]

What about asking for a ct scan that's how they found I had it

 

[Sally123]

thankyou for your advice after my biopsees come back if nothing shows I will ask about pill cam and ct scan thanks guys!

 

[Imageek]

I understand your frustration. I've been having a similar experience, but my symptoms are definitely not as bad as the ones you describe. Sorry to hear you are having such a rough time.

I too recently had a colonoscopy thinking that finally they would fine something and was somewhat devastated when it was totally normal except for some inflammation in the small intestines. I know it sounds crazy to be upset that something was normal, but I've been having daily stomach cramps and pain for almost 6 months now. Something is wrong, but can't seem to get the doctors to find it. I eventually start to wonder if I am just going insane or something.

I also just had the Prometheus blood test for Crohn's which came back "inconsistent with IBD" although they wouldn't tell me if anything on it was abnormal, they said they didn't know. So I'm waiting for them to mail me a copy so I can look myself. They just said the box at the top was checked so I must not have IBD.

Right now they still think I have IBS. But I'm down 15 pounds in weight, I've lost about 3 inches off my waist. My pants don't even fit me anymore. I also have a lot of cramps and pain. It just seems like a lot for IBS.

I am supposed to have another visit with the GI sometime soon. My plan it to ask about checking my small intestine. I know everything in the colon is good, but that doesn't mean I am not ill. You should probably ask about those tests as well. Crohn's can often be in the small intestines, while colitis is only in the colon(large intestine).

I've read that an average Crohn's diagnosis takes 8 months, so I think we're on the right track. Maybe I don't have Crohn's and maybe you don't either, but it really seems like something is wrong.

I honestly would never have believed that I would be wishing to be diagnosed with a disease, but that's what it has come to. Otherwise I'll just be the weird guy with vague GI issues. Also I can't be treated if they don't know what is going on. Right now they are just giving me advice and medications to see if anything works and so far it hasn't.

Hang in there, you aren't the only one struggling with these things.