VETERNS PLEASE HELP

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irish63
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 6/5/2008 2:58 PM (GMT -7)   
hey I have not been here in a while, been pretty busy with the kids, which is good.  I am hoping you all can help me.  My GI retired and I was assigned a new one in the practice.  Saw him in January liked him blah blah....   He did a colonoscopy in March and said it looked "great".  I had been having trouble and asked that Remicaide be moved to every six weeks, he said sure and it was and  because my back and hip have been bothering me for over a year and a half he ordered an xray.  So I go back yesterday and he says 1 your xray looked fine (of the sacliotic)  but the radiologist said I need to have an MRA, so he ordered that.  But, he says I met with the retired GI, he's in one day a week, and we don't have evidence that you actually have Crohn's disease.  WHAT???????  You had only microscopic inflammation.  I looked up the report as soon as I got home and it says"  ABNORMAL HISTOLOGY, REVIEWED BY TWO PATHOLOGISTS AND CONFIRMED CHRONIC INFLAMMATORY BOWEL DISEASE".  So I have been undergoing treatment for since 8/2005.  I say to the new Dr, "so you're telling me I have been on all these drugs for nothing?"  He says no, but you are on some powerful stuff and maybe you don't need to be?  OK.  He then tells me back in 2007 some blood work revieled I had a g;ucagon level of 807 and a gastrin level of 210 which are very high and that needs to be checked out.  So he orders an MRA and new bloodwork and for me to come back in two weeks.
What do you make of this.  So now I suddenly don't have IBD?  Am I f\going to be taken off all mhy meds?  I am doing th best I have in 3 years, I finally feel good besides the hip thing.  WHAT DO I DO????  Help me.....
I have been hospitalized on and off 12 times in the past 3 years.  I don't want to go back there. I dont want to be taken off my medicine for fear I will become sick again.  Please give me some advice!!!!!
Dx: 10/04 Crohn's, GERD, IBS,Osteporosis, Depression, Hypokelemia, "Crohn's" Arthritis, Migranes,
Meds: Asacol, Protonix, Lexapro, Celebrex,Potassium, Remecaide,Entocort, B12 injections wkly, Magnesium, Calcium, Phosphorus 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/5/2008 4:17 PM (GMT -7)   
Hi I think I would take that report into him and ask him about it. What was his reason for the MRA ? I think you should not get too upset till he gets your other results. Perhaps your IBD was in your small bowel. Hang in there till you get more results. lol gail

irish63
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 6/5/2008 6:48 PM (GMT -7)   
Thanks Gail. The MRA is for the hip, I think he's looking for Avascular Neucrosis. But who knows. I was so flustered by the time I left I just bolted out of the office. Do you or anyone think that he is implying I don't have Crohn's or IBD? He acted as if it was not C it was UC or nothing at all. Don't get me wrong, I dont want any of it but heck what the ### is wrong with me......
Dx: 10/04 Crohn's, GERD, IBS,Osteporosis, Depression, Hypokelemia, "Crohn's" Arthritis, Migranes,
Meds: Asacol, Protonix, Lexapro, Celebrex,Potassium, Remecaide,Entocort, B12 injections wkly, Magnesium, Calcium, Phosphorus 
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/5/2008 7:02 PM (GMT -7)   
Oh dear I'm sorry your dealing with this!!! I'm sorta going through the same thing only I haven't been on meds. But my GI doctor
tells me after 8 years that he isn't 100% sure I have Crohn's Disease. But for the past 8 years he has been treating me for Crohn's.
He can't tell me what I do have either. He just took blood 2 weeks ago that is suppose to tell me if I do indeed have Crohn's.
I won't get those results until I go the 20th. Tomorrow I have an apt. with a second opinion GI doctor because I am just so frustrated!!
I'm ill and have been for a month now and he can't tell me what is wrong with me. I'm angry, hurt, disappointed, depressed.
Its just crazy!! I wonder if we have the same doctor??? LOL I know exactly how you feel though!!

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 6/5/2008 7:15 PM (GMT -7)   
Maybe he is one of those that has to do his own DX before he will believe other doctors.
Anyway, I hope you don't have too much trouble with this guy. Has he reviewed ALL of your records?

Matthew

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 6/5/2008 7:19 PM (GMT -7)   
I would suggest a second opinion before stopping any meds. I read a book by a guy with Crohn's and he had some experiences when in the hospital and different doctors he saw all had different ideas, it was amazing how much their treatment plan differed.

I am sorry this is happening to you. I can understand your frustration. I wonder if you could switch to another doctor in the practice?
I hope you find some answers!
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also on Prilosec 2x a day for reflux.

 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/5/2008 7:20 PM (GMT -7)   
Irish, I don't know what to say to you!! It seems that you've been sick enough to be on these powerful drugs, I can't
imagine why they would be so unsure now.
I know diagnosis is so important to all of us, it's the only sure way of knowing we're not just barking mad....

I think I would keep plugging away at this. After all they could've put your life on the line with these meds, I sure
as hell would want to know what's going on...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


irish63
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 6/5/2008 7:23 PM (GMT -7)   
I do wonder if we have the same doc and I am so very sorry you are going through all this as well. It just STINKS big time. I know what you mean about having all those different emotions: disappointment, anger, depression it is crazy!!!!!! It's like you get the diagnosis and you try to learn to deal with it and then this doc you have so much confidence in tells you... UMM maybe it's not Crohn's. What the heck?????? Have you lost your mind? Just what have we been doing for all this time???? LBJ I'm here for you! We (undiagnoised/diagnoised/undiagnoised) gotta stick together!!!!
Dx: 10/04 Crohn's, GERD, IBS,Osteporosis, Depression, Hypokelemia, "Crohn's" Arthritis, Migranes,
Meds: Asacol, Protonix, Lexapro, Celebrex,Potassium, Remecaide,Entocort, B12 injections wkly, Magnesium, Calcium, Phosphorus 
 


irish63
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 6/5/2008 7:33 PM (GMT -7)   
Thanks everyone, I swear I just wanted to run home and get on the computer to tell you all so you could help me at least advise me of what to do next.
Vicky: My words exactly, I've been on all these drugs and for NOTHING great I'll reep the Awlful benefits 10 years down the road for the drugs I've put into my body for the past 3 years!!!!
Matthew: My husband said the same thing maybe new guy needs to do his own thing. He is really young and cocky.
Gail: I am absolutely going to take that paperwork with me and shoove it in his hot little hands!
Karen: That's good advise a second opinion before stopping all meds!! Good idea. Now I need to figure out if my ins will allow.
Dx: 10/04 Crohn's, GERD, IBS,Osteporosis, Depression, Hypokelemia, "Crohn's" Arthritis, Migranes,
Meds: Asacol, Protonix, Lexapro, Celebrex,Potassium, Remecaide,Entocort, B12 injections wkly, Magnesium, Calcium, Phosphorus 
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/5/2008 7:45 PM (GMT -7)   
irish63 said...
I do wonder if we have the same doc and I am so very sorry you are going through all this as well. It just STINKS big time. I know what you mean about having all those different emotions: disappointment, anger, depression it is crazy!!!!!! It's like you get the diagnosis and you try to learn to deal with it and then this doc you have so much confidence in tells you... UMM maybe it's not Crohn's. What the heck?????? Have you lost your mind? Just what have we been doing for all this time???? LBJ I'm here for you! We (undiagnoised/diagnoised/undiagnoised) gotta stick together!!!!

 I'm right here with ya sister!!!!   :-)     
 
 
Dawn

ClassAction
Regular Member


Date Joined Nov 2003
Total Posts : 437
   Posted 6/6/2008 7:25 AM (GMT -7)   
I've had new GI docs that have tried to take away my dx. Fortunately (or unfortunately, depending on how you look at it), I had surgery and the proofs in the stitching!

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/6/2008 7:57 AM (GMT -7)   
I am so sorry you are going thru all this......
YOU have been given some great input ......

I think I would want a second and third opinion ( but here we dont pay outta pcket either)
How is this possible
Be your own best advocate Irish......
WE all are with you on this one
I again am so sorry

LYN
  DX With Crohns,Pyoderma Gangrenosum,Anxiety/Panic,Fibro & Other DD
 
Moderator @ Anxiety Panic..Alzheimer's..Co mod @ Crohns
                               FIGHT the FIGHT with all YOU HAVE
         Be Well All and Stay With Us We are Here To Help
                               LYN 
   
 
                   
 


Jason D in MN
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/6/2008 3:46 PM (GMT -7)   
I'll chime in and say what's already been said. "Get a second opinion!"

If he's young and cocky and can't believe the work done by others he *could* do more harm than good.

Basically for me it would come down to the following:
a) What is he basing his opinion on? I would demand details enough to choke the likes of Alan Greenspan. (While not a doctor the guy was remarkably detail oriented)

If I can see the reasoning, and believe I've gotten the details I asked for I'd double check these things online and with another doctor. (You can never be too careful with your health) If the story pans out, I'd hang on a little longer to get a better feel for things.

b) Does he speak to you in a way where a day or two later *I* can give an adequate explanation in laymans terms to a friend that answers all my friends questions?

If not, I'm not getting or understanding the full story. If I'm not understanding it, I'll do a sanity check to make sure I asked the right questions in the right way. If I did then I'm not going to really trust the Dr. either the guy doesn't know how to communicate, or is unwilling to divulge the details I need to be comfortable with the diagnosis/treatment.

c) Is he listening to my concerns? (Not does he agree with them, but is he listening, if he is he'll reflect them back when discussing things.)

If not I'd begin searching for a different doctor. If the doc can't communicate in a very basic way that shows he's heard, and understood my opinions, it won't work for me. I won't trust him. I'll always second guess what he has to say and that won't help me get treatment I need, regardless if it's something I want or don't want.

d) Do I have a "good", "bad" or "confused" gut feel for the guy? If "good" i'd give him a second chance, but be demanding, if anything else start looking for a different doctor.

Remember this isn't about hurting a doctors feelings (we all know they're soulless heartless automatons programmed to steal our souls one small piece at a time... just kidding...) It's about you getting the best medical care possible! The doctors feelings are not on that list, they don't matter. If a doctor takes personal offense at that, then perhaps another career should have been pursued.

I hope that helps...
-- Jason
Diagnoses? Crohn's in 1983; Kidney Stones in 1997; Reactive Airway Syndrome in 2002; Major Depression and GAD in 2003; Migraines in 2006; ADHD and IBS in 2007.

Current Meds? 6MP; Adderall; Wellbutrin; Zoloft; Albuterol (emergencies only); Fexofenadine; and Epidrin or Imitrex (depends on migraine severity...etc)

Overall: Things are So-So. In other words "It could be worse. It could be raining."

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