My second opinion doctors apt. yesterday (long)

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LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/7/2008 3:50 AM (GMT -7)   
Well, it wasn't bad actually. It was very informative. I learned alot
and he helped me to understand things that I was having trouble
understanding. He also reassured me that I'm actually with the
best of the best of doctors. (Yeah, he put my doctor over him
even) I had to go way back in the day when I first started with
all this 8 years ago up to today. I told him how my current doctor
can't tell me he's 100% sure I even have Crohn's but that I need to
know 102% if I have Crohn's, because if I don't, then I have been
treated wrong all these years and need to find out what is wrong
with me. He said I may never know 102% that I have it or don't
have it. Its like that with all these autoimmune diseases
unfortantly. They are still researching so much with it down to
how people even get it. He said so I could start going to him and
he said he may never even be able to find out if I do or don't have
Crohn's Disease. They basically base it on your symptoms and
guess work.
He told me there are 5 doctors in the area, named them
all and what hospitals they work out of, him included. And he said
out of the 5, I'm with the best. He said my doctor is on the Board
of Blah blah blah (All that doctor talk that I wasn't about to try and
understand-lol) and he said that all the new things that come out
with Crohn's disease, my doctor is actually the first one to get all the
info before the rest of them. He said that my doctor is right on with
everything in doing what he's doing. He did bring up a few tests that
I have never heard of or had done, and he suggested that I get them
done. (Small Bowel Exam, CT Scan, and a HLA B-27 Blood test)

While I was sitting there, he dictated a letter to my doctor and told
him that he suggest doing these 3 tests on me. So that was really cool!!!
He also recommended that I stay with him, although he would be
more than happy to take me on. I told him how it was really hard
for me to make this appointment because I do love my doctor, but
explained why I needed a 2nd opinion. He told me to not always
look at a 2nd opinion as a bad thing. He said they can actually really
really help you. He told me to keep in mind that doctors often focus
on one thing and sometimes forget to look outside that box.
So he said by him telling my doctor -"hey do this, this, and this",
it could really turn out to be a super good thing for me. Because
I had never heard of them, I wouldn't know to ask my doctor
"hey can we do this test" kwim? So he said that he hopes he really
opened a door that will really help me here.
Would I ever think to go to this guy as a patient? No.. I am super
glad I went because I got so much out of it that I'm lacking with my
doctor right now. He was very imformative for me, but I could tell
he wasn't very personable. And I like that in my current doctor!!
And it does feel good to know that I am truely with the best one!!
So, I guess I just have to suffer through this all a little longer.

I'm not due to see my doctor again until the 20th. I have colonoscopy
scheduled for July 3rd. And on the 20th I'm going to talk to him
about these other tests and sorta ask him why he hasn't done them
on me (maybe he has a reason), and see if I can possibly get them done.

So that's where I'm at with all this. I'm super glad I went. I walked
out of there feeling really good. And like he said, hopefully it
will open up a new avenue for me. In the meantime, I try
and get by as much as I can until I get these test done.

Post Edited (LBJ) : 6/7/2008 5:23:35 AM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/7/2008 3:57 AM (GMT -7)   
Wow! That sounds as if it was a really productive appointment. I'm glad for you.

What were the new tests he mentioned?
Co-Moderator Crohn's Forum.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/7/2008 4:25 AM (GMT -7)   
I bolded them uptop so they stand out. lol

With my lower back really bothering me he said I really should get the small bowel
test done. I'm not sure why my doctor has never done it but I am going to ask.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/7/2008 4:29 AM (GMT -7)   
Oh, sorry, I must have missed them before.

I'd be interested to know what your doc says when you do ask him.

Thanks,

I.
Co-Moderator Crohn's Forum.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/7/2008 4:58 AM (GMT -7)   

That's ok.. I know alot to read there. 

I will be sure to post about it!!   Have you ever had one done?   

I have no idea what to expect. 

 

Dawn

 


rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 6/7/2008 5:17 AM (GMT -7)   
Sounds like that was a good example of the purpose of a "second opinion" I agree with him that you may never know for sure you have IBD. I've been searching for 11 years, or 21 years if you count when I just had joint pain and no hint of gi problems. I'm on gi #3 who was willing to try a trial of treatment without any definite proof of IBD but symptoms that suggested it, which worked very well. That convinced the rheumatologist to treat me. I understand your frustration. Sometimes I think finally getting treatment is a dream and I will wake up to the same continued frustration.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin, sertraline, lyrica, 10mg prednisone, next???   


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/7/2008 5:30 AM (GMT -7)   
This disease is just so confusing!! I guess I just didn't understand how they can never really be sure
you have Crohn's Disease. I just feel like either you have it or you don't, like any other health issue.
They know when you have Cancer, so why can't they tell you that you for sure have Crohn's?
Its just really odd.

Dawn
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
 
Drugs I have tried:  Just about everything
 
Drugs I'm on right now:  Prednisone 40mg
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 6/7/2008 7:13 AM (GMT -7)   
I'm in the same boat. I was diagnosed off of symptoms and a really high promesthus blood test. My colonoscopy showed inflamation that could be crohns or from the prep. I never had a definitive granuloma. But at one point my symptoms were pretty severe. My doctor started me on Crohns meds and I responded quickly. In his opinion if I didn't have crohns, they wouldn't have worked. So we are going with it.

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 6/7/2008 9:00 AM (GMT -7)   
My gi says the same as Fitzy's. These meds like pentasa are very specific. I came right out and asked "could any other disease respond this way to pentasa?" and the answer was not likely. It doesn't mean that it is "Crohn's", just some form of IBD. They don't know everything about these diseases, there could be many inflammatory diseases that make up "Crohn's".

In some people they can say for sure its CD. But if its hidden in the many feet of small intestine it may be out of reach of testing, even with the capsule. Another reason is because CD is patchy and can be microscopic and not visible with the scope. They can biopsy but because of the patchy nature of the disease could easily miss the areas of inflammation if they are microscopic. Some other diseases are very elusive i.e. MS can take decades to diagnose. I think they probably treat the symptoms, which is what they are doing with us who do not have definite diagnoses.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin, sertraline, lyrica, 10mg prednisone, next???   


irish63
Regular Member


Date Joined Jan 2006
Total Posts : 242
   Posted 6/7/2008 9:18 AM (GMT -7)   
I am so glad your app went well. I think I even feel a bit better about my situation. I'm completely with you on the "not understanding why there can't be a definative diagnosis". It's just crazy, our medical community cures diseases each and every day but can't tell us our problem. Anyway, I wish you only the best and know I am here, and really in the same boat as you, so I'll help you paddle. :)
Rhonda~ aka:irish
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 6/7/2008 11:56 AM (GMT -7)   
rootsmith said...
My gi says the same as Fitzy's. These meds like pentasa are very specific. I came right out and asked "could any other disease respond this way to pentasa?" and the answer was not likely. It doesn't mean that it is "Crohn's", just some form of IBD. They don't know everything about these diseases, there could be many inflammatory diseases that make up "Crohn's".

In some people they can say for sure its CD. But if its hidden in the many feet of small intestine it may be out of reach of testing, even with the capsule. Another reason is because CD is patchy and can be microscopic and not visible with the scope. They can biopsy but because of the patchy nature of the disease could easily miss the areas of inflammation if they are microscopic. Some other diseases are very elusive i.e. MS can take decades to diagnose. I think they probably treat the symptoms, which is what they are doing with us who do not have definite diagnoses.

WOW!!   Thank you Rootsmith!  That totally makes me understand this disease much better!!   I didn't know that it could be microscopic.  That would totally then explain why my scopes always come back clean and show no active disease. And then I get so frustrated because clearly I dont feel well and having a flare when I have my scopes. 
 
 
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
 
Drugs I have tried:  Just about everything
 
Drugs I'm on right now:  Prednisone 40mg
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 6/7/2008 11:58 AM (GMT -7)   
irish63 said...
I am so glad your app went well. I think I even feel a bit better about my situation. I'm completely with you on the "not understanding why there can't be a definative diagnosis". It's just crazy, our medical community cures diseases each and every day but can't tell us our problem. Anyway, I wish you only the best and know I am here, and really in the same boat as you, so I'll help you paddle. :)
Rhonda~ aka:irish

EXACTLY!!!   I'm so glad we think the same and I'm not alone with this!!!  (((Hugs))) 
I'm rowing right with you!!   :-)
 
Dawn
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
 
Drugs I have tried:  Just about everything
 
Drugs I'm on right now:  Prednisone 40mg
 


Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 6/7/2008 12:06 PM (GMT -7)   
I have had CD for 34 years and have gone through 3 GI's only due to retirement of the first two. May be I have and advantage to understanding the disease due to my ex-husband being a GI himself and my son being a Interenist. Thought I work in the finacial feild as an accountant my first degree is a BScN. I have over the years learnt so much about this disorder and am a good patient because I understand that if I sway from my program that I will be the one that suffers from the reprecussions. I have changed my lifestyle to suit the disorder and not expected the disorder to suit me. I am not saying others have not just that at times I read about people swaying slightly and bang a flare is present.

I also have AS, Asthma, Uveitis and just have been diagnosed with Osteoarthiritis due prednisone. I take the medications that not only my doctor but I feel will benifit me. Sometimes I have fight through this though; but, it is well worth it to do.

I wish you all good luck and wish you all the best with your health.
CD diagnosed 34 years ago
Stem Cell Transplant may be back on
Lap-assisted Ileocolic Resection- February 2008
Ankylosing Spondylitis
Uveitis
Back on Prednisone - I hate it
Methotrexate
Ranitidine HCL 
Prednisone 1% (eye drops)
Maxidex  (eye ointment)
Homatropine 5% (eye drops)
B12, Folic Acid, Vitaman D, Calcium

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