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Some thoughts on physicians

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Crohn's Disease
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Posted 5/31/2008 3:11 AM (GMT 0)
This forum should be required reading for gastroenterologists.  I get more answers from all of you than my doctor can provide.  He'll deny that something I am experiencing is due to the crohn's or medication, and then I read a post here with several people having the same experiences. I guess it's time I start searching for a new doctor that is open minded and actually wants patients to be educated about the disease and is open to discussion.

My dream doctors would be an enterology group that all had crohn's or colitis. 

 

Posted 5/31/2008 3:17 AM (GMT 0)
Hi there, I know all about GI's and specialist, my first GI and the one I have now, they were the best.  I have had 3 others, and they seem like they must be in it for the money because I see them enough and didnt know me from Adam.  I live in Canada and they now limit 2 questions at a time.  Very hard to get everything mentioned without sounding like a whiner.  I have had crohns approx 30 years, diagnosed 15... if you tell your doctor you are going to get a second opinion, if he cares, he will move to lightening speed to find out what is wrong, if he doesnt go see another one, usually word of mouth helps.  This site, really helps because when you think your nuts, everyone else has the same problems, everyone here will help you if they can.  Good luck.
Posted 5/31/2008 4:23 AM (GMT 0)
Only two questions a visit??? That sure as h*ll isn't medical care much less good medical care!!!!
Posted 5/31/2008 4:59 AM (GMT 0)

I think some of them do read here at the forums...afterall, there are a few good docs out there, how do you think they became that way??? devil

:)

Posted 5/31/2008 5:05 AM (GMT 0)
I hear ya. My primary doctor knows more about the problems from Crohn's that occur outside the intestines, then my GI does. He'll say he's never sure if something is from Crohn's, kinda like he's just covering his butt. But that doesn't help me, or any other patient in search of answers, worrying they've got something else going on then. It's frustrating!
Posted 5/31/2008 10:29 AM (GMT 0)
That's probably because a gastroenterologist speicalizes in the gut not in a disease. Really sucks for those of us who have systemically expressed chronic illnesses.
Posted 5/31/2008 12:12 PM (GMT 0)

belleenstein said...
That's probably because a gastroenterologist speicalizes in the gut not in a disease. Really sucks for those of us who have systemically expressed chronic illnesses.

This is what I'm definitely learning about my current GI.   

I have learned great things from this site and its also helped me with coming up with questions to ask my doctors.   

 

Posted 5/31/2008 3:21 PM (GMT 0)
My GI is great. I told him I use this site, I read a post and they were talking about rectal spasms, I was having problems and I brought it up and told him I found out about it on here, He asked what you all suggested because what he did really didn't work. He thinks its great I come here. And my therapist she thinks its great to. Now my regular doctor is a royal but. I've done more for me than he has and when I brought up things I learn from here, He won't lessen to anything I have to say.( he is GOD after all).


Dawn
Posted 5/31/2008 4:10 PM (GMT 0)
I'm sure it is because they specialize in just the gut. But when specializing in diseases of the gut, it would be helpful if they made sure they were well educated on the entire disease. Not just one part of it. That really doesn't help the patients. I don't expect them to be specialists in joints ect... but it would at least be nice if they were knowledgable about all the things the disease effects!
Posted 5/31/2008 4:46 PM (GMT 0)
My GI's office had a little booklet they give out about crohn's and colitis and the booklet contains this webpage address as one of a list of places to go for further reference. That's how I found the site.

I think my doctor likes me to be informed about my disease, as then we can spend the short appointment time on finding answers to my concerns - I just make sure I approach him in a way that doesn't offend him -he is after all the specialist. I just make sure I word things like "could it be"... or "I was noticing these symptoms and did some research, and was wondering if this could be a possibility?" instead of saying "I think I have this". I let him have control.
So far I have a good relationship with my doctor. Hopefully that will continue. I do know that most of us with crohn's know when something is not "right" with our bodies, and if we complain about a new symptom - there's usually a very good reason for it. Doctor's who blow us off because they can't find an answer annoy me to no end.

Just because they can't find an easy answer doesn't mean there's no answer out there.

Bev
Posted 6/1/2008 6:37 AM (GMT 0)
My Gi is an idiot too(about CD). He just doesn't know much at all! It is surprising as he is not unintelligent, just uneducated and UN-Motivated in learning about it. He just says, "No, CD doesn't cause pain, fatigue, etc...". BIG SIGH. What can you do. One is worse than the next GI, so I stay with the one that hasn't landed me in the ER(yet) or been hauled off in handcuffs on prime time news(yes HIM, I saw him)
Posted 6/1/2008 5:17 PM (GMT 0)
Quoted from bentwistle "Just because they can't find an easy answer doesn't mean there's no answer out there." Every new person on this forum should learn this. Great statement and so true. I notice new people that come on here and right off the bat post 5 or 6 questions, I don't blame them when these professionals have no basic answers because the experience isnt there like we have.
Posted 6/2/2008 12:37 PM (GMT 0)

Ne Ne said...
My GI is great. I told him I use this site, I read a post and they were talking about rectal spasms, I was having problems and I brought it up and told him I found out about it on here, He asked what you all suggested because what he did really didn't work. He thinks its great I come here. And my therapist she thinks its great to. Now my regular doctor is a royal but. I've done more for me than he has and when I brought up things I learn from here, He won't lessen to anything I have to say.( he is GOD after all).


Dawn

Try buscopan for the spasms, it has minimal side effects, it works for me.

Posted 6/2/2008 2:54 PM (GMT 0)

Crohn's 4 ever said...
Hi there, I know all about GI's and specialist, my first GI and the one I have now, they were the best.  I have had 3 others, and they seem like they must be in it for the money because I see them enough and didnt know me from Adam.  I live in Canada and they now limit 2 questions at a time.  Very hard to get everything mentioned without sounding like a whiner.  I have had crohns approx 30 years, diagnosed 15... if you tell your doctor you are going to get a second opinion, if he cares, he will move to lightening speed to find out what is wrong, if he doesnt go see another one, usually word of mouth helps.  This site, really helps because when you think your nuts, everyone else has the same problems, everyone here will help you if they can.  Good luck.

I live in Canada too and have to agree to get something done you need to say that you want a second oppion.  I am treated by what is supposed to be the best GI that deals with CD.  I am not saying that he is bad just that he doesn't listen.  Earlier this year I had a resection done and still have problems.  I suffer from AS and now osteoarthritis (sp) along with Uveitis.  I have been in flare with my osteo for about a month.  I have been seeing a eye specialist for two months now.  These are supposed to be precrursors to a CD flare.  My GI says that they got it all and that right now I am in remission.  The funny thing is some days I feel this way and others I don't.  I have taken most of the drugs for CD to include Remicade (was in the testing for the drug).  Last week I went to the GP to see about my cough and she did an x-ray because she thought my asthma (I forgot to add this) was acting up.  The x-ray showed a nodule in the lung.  Hmmm....have to wonder in a previous gastroscope they found a lymphoplasmacytic in my stomach, which was not related a H. Pylori.  I was diagnosed with Gastroitis.  My GP doesn't think that it was the right diagnoses.  When I saw the Rheume on my last visit I felt like he was pissed because he wanted to put me on Remicade and now can't till they complete the CT Scan and biopsy the nodule. 

Any way if you are dealing with the top doc's where do you go?  No other doctor will question their diagnoses never mind change anything that have decided to do.  I have tried and feel that the pickle hasn't changed just the bumps have moved. 

By the way I will add that my doctors are good and great at their jobs.  Just that sometimes I feel that they think they are gods and that they are better at understanding this disease than we are.  I know that I understand my disease more than they will know and have to remind them that not every patient is the same.  Not every flare up is the same. 

For me time will tell.  Sorry to ramble on. 

 

Shoshanna

 

Posted 6/2/2008 10:56 PM (GMT 0)
So great to hear I'm not alone with my feelings. Once I read something on the internet and asked my doctor . . "what is ..." He said you don't need to worry about that. Great. So, I insisted that I did think I needed to worry about it, and he then told me why I didn't have to worry and it turned out there had been a miscommunication between us last year, and something he said confused me. If I hadn't insisted on knowing the answer, I'd still be worrying about it. He actually pooh-poohed the internet. I guess he thinks he knows better. Sigh.
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