Serious confusion 1st GI visit

[minky]

Hey guys,

First GI visit yesterday: Background for you. Sick for the past 5 years, at teh beginning sick and d and turned out gallbladder. So got that out and it was chronically inflamed so thought that was the prop. Still ongoing - had both scopes done and told IBS. Things gtg worse and worse so changed doc this summer. Had a CAT scan - showed thickening of the bowel, had a colonoscopy in Oct just gone and there was visable inflamation and GI said crohns based on appearance. However biopsies came back clear. Started pentasa - didnt work and then questran - probs with that so had first GI visit yesterday since diagnosis.

Main probs with me are really sick and d for a wk to 10 days, then fine for a few weeks and back again. Also suffer bloating, urgency and reflux. Have eczema and just generally look like *****. Have missed a lot of sick days etc.

Soooooooo, yesterday the GI said that he is not happy to say chrons as he thinks its a sensitive bowel I have. Biopsies are clear etc so the story now is IBS he is saying. They did a good few blood tests yesterday and I am scheduled for barium meal n follow thru in a few weeks and thats it then. If thats fine, IBS is my prob. Now obviously I would be thrilled if its not crohns I have but I feel like I am just begin fobbed off again or something.

Anyone with experiences like this??

Thanks,

Minky

 

[Binxybop]

i'd say something has got to be causing the thickening of the bowel, right? I'd ask them how to explain the thickening of the bowel, if they are suggesting IBS is the diagnosis. I don't know enough about sensitive bowel... is that similar to IBS?

My GI is an IBS specialist and whenever I mention some of my symtoms (sharp pains, doubling me up, etc) he says it sounds like it could be IBS!? lol, without fail everytime, even though biopsies show positive crohns :ybatty:

Keep us updated with your tests, hope you get close to a resolution soon.

:thumleft:

 

[minky]

Thanks for the reply binxybop,

Ya I forgot to say that I did ask about the thickining and even my hubbie was with me as well and he asked questions:

Thickening on CAT scan - his reply was more than likely shadows etc - not enough evidence

Inflamation - he said there is no record of inflamation but I said the GI who did the scope did say inflamation was present and again he is not convinced.

So he is just labelling IBS as a sensitive bowel, sending me off for the barium meal and follow thru and then thats it. I swear its so annoying as you feel like you are not begin taken serioulsy. Even hubbie was saying it as well - its all ya ya ya ya to your reply!!

Sorry for the rant

 

[Astra]

Hi Minky
Dont know wot sensitive bowel is, but my consultant once told me that IBS does not exist, that there's always an underlying reason for D & V, cramps, bloating, urgency and reflux and must always be investigated. He said it's the lazy GPs who diagnose IBS cos they can't be arsed to refer to gastro.
My GP misdiagnosed me for 15 years with IBS! If I'd have screamed and shouted for a referral years ago, I wouldn't be in this bloody mess now! My gastroentorologist found the Crohns immediately with a scope that first time!
So scream and shout Minky, get a second opinion
DO NOT BE FOBBED OFF!
lotsa luv
Joan x

 

[Peaches]

Hey Minky - you need to see if you can get copies off all of your medical records for yourself - go in armed. If there was inflammation stated - then it should be in those reports. Inflammation plus bowel thickening does NOT equal IBS! That is what I would do first if those blood reports do not come back conclusive enough for you.

Are you in the UK?? I'm just wondering in these areas where you guys have nationalized healthcare if the docs are heavily pressured NOT to claim chronic illness as a diagnosis as so many people with them get wonderful disability benefits from them??? I just scratch my head sometimes when I hear certain things that sound so IBD'ish and come back with a IBS diagnosis.

 

[minky]

Hey there,

Thanks for the replies.

I am from Ireland. I think ye are right thou about the screaming and shouting. Must ask the doc for my notes now as I am definately not dreaming about the inflamation and I am just sick and tired of being fobbed off like at this stage. Cheers

 

[Peaches]

Yep - it is all about self advocation at this point. Good luck buddy - hopefully you can make some progress..

 

[tamesis]

Hi Minky, i'm so sorry you're struggling with this. I, too, am fighting for some sort of answer for IBD-ish type symptoms, and I can deffinately relate that it's extremely frustrating to feel like you're being ignored. keep pushing, and don't be afraid to look for a second opinion! Any chance you can go back to the GI that did the scope?

 

[shazamataz]

Hi Minky - I hope you can get some answers soon. I would expect that thickening is more than just IBS or sensitive bowel!!??

 

[porter89xxx]

Im in the same situation they are sort of fobbing me of with this aftersaying well we done alot of tests etc when they did most there tests when i was on steriods that would clear inflammation that they saw before giving me the steriods. it really just confuses me how some drs are really doctors you would think they would have more sense

 

[MAD]

Hey there, my story is, I have been sick most of my life but not much happened until I had my child in 2006 I thought they had left something in me so had a scan and it showed thickning of the kidney walls but not much else, so as you do we carry on, then in september 2008 my pain got so bad I could not move and I fainted so went to hospital they did there thing had all treatment in the same night so could not sit for a while LOL, they said I had Crohn's and Ulcerative Colitis with olsers. I was in hospital for 8 days they put me on 8 Pentasa 3 5mg Prednisone and 2 40mg Pantprazole also 2 50mg azl. I have just started to ween off most of them but yesterday I had a really streesed day and all the pain came back so off to doc later to figer out what med to stay on as they all make me go really funny in my head eg: cant think feel sick, cant eat over this time I have lost over 8kg in weight so that a problem as i'm getting to small ment to be 65kg for my hight but only 48kg now.