So fired up!

[markbills85]

Hey guys need some help,

i just saw specialist 2day been really sick - was daignosed 2 years ago with chrons and been on prednisone 5-6x in last 2 years - and imuran not working that great - thsi specialist 2day now thinks i DONT have chrons and that something else may be going on! this is good news but it doesnt change the fact that I am still sick and he wants to do a caloric count suggesting that i have an eating disorder meanwhile for the past 3 weeks ive been drinking 3000 calories of ensure and low residue just to keep functioning. Im in pain, nausea lowe right quadrant pain - im pissed off, anxious and not happy. any ideas? i go back in see him in 2 weeks but he initally said 1 but is on vacation - hopefully i can survive that long as i am busy at school 10 hrs each day.

 

[Crohn's 35]

Oh noooooo...not another "I don't know what it is syndrome Eating disorder? So many people get that lame excuse for a diagnosis, spastic colono or IBS I could live with but you don't get LRQ pain on eating disorders.

I would of said see another GI but I see you are in Canada, good luck with that :voodoo:. I would tell your doctor you need a Colonoscopy with a biopsy, because unless you have a eating disorder (I think you would know) you need to get a proper dx in order to get treatment. If you get in alot of pain go to an ER, sometimes you get better help there. One thing you dont need is an obstruction. What part of Canada are you in? :hang:

 

[markbills85]

Im in ontario, london - he laso tol,d me to go off prednisone cold turley started it 6 days ago - is this ok? hes getting all my old tests and trying to put the pieces together - i feel like he will look into everything but getting me to do a caloric count is absolutely ludacris especially when im too busy with school - gonna try claling my dietician back home to tell her to call them she has known me for 7 years. im just trying to stay until control - im pretty pissed - my fist doesnt feel 2 good after punching my bedroom door numerous times

 

[Mayflower537]

Yowza, how is it possible to have your dx yanked away? I take it this is not the doc who dxed you in the first place? That sucks, I am sorry that is happening to you. I think that's worse than being UNdiagnosed.

 

[markbills85]

no this is a new specialist - im mad that ive been on all these drugs and that i kept complaining of sx and they kept putting me on prednisone - last 3 years of my life has been hell and nowI feel lost apparently im suppossed to eat as much as possible but eating food hurts - just picked up like 200 cases of ensure so i should be ok just in a bit of shock right now

 

[gringo43]

Damn Mark....hate it for ya...sometimes the "practice" of medicine is cruel beyond imagination...sorta of like "who the hell do I believe now?"...save those nuckles {you might need those hands to strangle one of those turkeys"

I'm not familiar with the Canadian system so I'm not much help. I'm sure Pen can give you better ideas about what to do next. Sometimes a fresh approach turns out okay....just sucks when your diagnosis keeps getting changed while you're the one suffering. Wishing you the best.

Jerry

 

[seaofdreams]

I can't even imagine how I would feel if I got told that I didn't have Crohn's but an eating disorder instead. Is it possible to get a second opinion from another GI?
When you were first diagnosed, was it after a colonoscopy & biopsy?

 

[markbills85]

he didnt say i had an eating disorder...but hes practically implying it by asking me 2 do a calorie count - i was diagnosed via a colonscopy biopsy they found inflammation in my small intestine - and a lot of other inconclusive tests, the biggest issue is being told this after being on meds, diets and trying to scrape by and on top of that trying to keep my poise when im not feeling good at the present moment and 0 medications minus the gravol until i wait 2 see him in 2 weeks

 

[Manzyb]

I'm so sorry Mark!

Something like this happened to me before I was diagnosed, but it was before they diagnosed me.

For 3 yeras they kept telling me it was spastic colon, ibs, and finally I had an eating disorder. It is so frustrating. I hope that you get some answers soon. Hang in there!!

 

[markbills85]

thnaks guys trying to get my emotions in check and chill out a bit - this is a lot of nonsense all at once and i gotta make it through school with a smile on my face

 

[ameslouise]

Just wanted to chime in and say how sorry I am for your frustration. Why does this specialist not think you have Crohn's? Is it only because you are not responding to the Imuran?

Maybe you can get in to see whoever's covering for him while he's on vacation!

Good luck - Hope you get some relief soon! - Amy

 

[Silvermoon]

Hi Mark. So sorry to hear about your frustrations, and unfrotunately I have no advise to offer other than what has already been said....

Im in ontario, london - he laso tol,d me to go off prednisone cold turley started it 6 days ago - is this ok? ...

If you have only been on prednisone for 6 days, yes you can stop cold turkey. You are "safe" up to 10 days. However, that being said, if you feel uncomfortable about that, cut by 5mg every 4 to 5 days. Or you can ask your pharmasist (pharmasists are awesome resources when it comes to meds )

Sending warm thoughts and hoping you find relief soon.

Hugs

 

[markbills85]

he just explained all the tests results are showing something but its all vague pieces of the puzzle kind of slapped together in the diagnosis - dont think i can get into another specialist ill do my best i guess

 

[DustyKat]

Oh Mark I'm so sorry to hear this, it really sucks. Please continue to believe in yourself and I hope you can find another doctor that listens to you. Please continue to keep us posted on how you are doing.

Take care, :hug:
Dusty

 

[Crohn's 35]

Hey Mark if you can get your doc to see another referral and hopefully a respectable one and one who specialises in Crohns. YOU have that right but the system being the way it is... my first GI fought for me because the surgeon who did exploratory surgery took out my appendix and wouldnt dare take the blame for the mess he did to my head (all in my head) and been to a couple of others because I moved and 2 allmost killed me, and now my current one who is wonderful but has exhausted everything he can do for me and he is retiring... so just waiting now for a new Gi local and a surgeon. You have to get tough and tell them you need help and now!

 

[Guest]

hi Mark... wow i am not surprised you're so cross - i am, just reading this thread!

i'm wondering if the logic behind asking you to do a calorie intake test is that he suspects absorption problems? i presume you got weighed at this appointment? - maybe that is just one area of figuring things out that he's got in mind.. weighing you before & after the 2 week gap, seeing what your calorie intake is and what your 2nd weight should be...

this to me would make more sense than the possibility of it being an eating disorder - as has been said, you just don't get the same symptoms as you've experienced, nor the test results you've had, with anorexia or bulimia!

if you really can't change quickly to a new GI, then if it were me - i'd first of all write down all my questions as to this guy's conclusions regarding taking you off pred, saying it's not Crohn's, and asking exactly what he suspects it is.. and then take those notes with you and present them to him at your appointment.

i also think it's a good idea to do what you said - to contact your dietician, and maybe also if possible, write to the consultant who first diagnosed you with Crohn's and ask for his thoughts.