Pissed, New GI, Frustrated as he!@

Sounds like you have to find a Dr/Gi that you can have some confidence in.

I think sometimes that the wrong Dr. can experiment with trial and error. They don't think about you between appointments. This is why you have to look out for yourself, as no one else will.

Also, I don't think it's wise to just stay on Prednisone indefinitely. You will likely need to find a maintenance medication that will keep things at bay. 

 

This is my biggest problem with Doctors, what if she is right? What if I have been on the wrong treatment all these years for the wrong disease, although there is enough medical data discounting every other disease on the planet.

I want to believe in my Doctors, in Western medicine, but every time I have to see what I call "Dueling Specialists" 2 or more specialists in the same department, even in the same hospital, weird, I end up getting completley different oppinions on things, and completley different ideas on the meds I should take.

yet none of these Doctors seem to take into account what I tell them works, they only seem interested in pursuing whatever idea they have formulated in their head based on the 20 min eval after never having met you.

I am of the firm belief that if it walks like a duck, quacks like a duck.....I just don't think you really need the "smoking gun", that being the inflamation they are looking for in my intestines. If all the symptoms match, if the meds designed for that disease help then it would seem logical that the original GI was right, or at least I hope so.

I suppose the real question is,would you subject yourself to all the testing you went through for years to be diagnosed with crohns all over again simply on the whim of a "Duealing Specialist" on the off chance she may be right as well.

I have had time to think about this, I see no harm in her running some ct's, but no more scopes or go-lighty (fill in other endless stuff here) unless I say so. I get to keep my old GI through the kaiser system, so it isnt like I cant still get treated by him.

Prednisone, how the hell do I get off, every time I get down to 15 mg or below I become deathly ill, drop 20 or 30 pounds and have some organ fail on me miserably costing me a year of my life, apprx.

I want to get off, but I have tried all the others, remicade, immuran, entocort, pentassa, the list goes on.

So far the only thing keeping me going is the pred, how does one eween off the only drug keeeping you theoreticly alive?

Thanks

Jon

Staying on pred especially at the dose you are on is not a good idea for long term medication. It has too many major side effects. What drug regime would work I have no idea, maybe you need to list down exactly what you have tried and the effect - or no effect- they had so she understands fully. Very few consultants will fully read you notes to find out exactly what you have been doing for past 11 years so you need to fill in the blanks for her.

Maybe the reason she is questioning the CD dx is that none of the medication you have tried has worked apart from the pred and so she wants to check that this is the correct dx. CD can be hard to test for in some cases, if she wants scans then ask for a pill cam as many people on here have found this is the only thing that gave them their dx. Also the symtpoms of CD can mimic many other illnesses, that is why it can be difficult to pinpoint a dx especially if very little in way of inflammation.

Good luck in your quest and hope you can find something that works for you soon.

I have to agree with the others about pred. The stuff turns me into a wild and crazy guy . Docs know this and if they dont their not much of a doctor.

This is hilarious, I cant make this stuff up....

I sent my old Gi an email asking his advice, since the new gi completley said the old gi was wrong about crohns. Here is what I wrote him:

Doc,

Hey, I went to see Dr B  for what I thought would be a meet and greet for maintenance for Crohns.

Turns out she disagrees with you and does not believe that I suffer from Crohns and wants to start all over with the testing for inflamation, scopes and all...

I am terrified, I can not go through 11 more years of scopes and meds based on "Dueling Specialists" theories, your diagnosis matches the symptoms perfectly.

If she is right I am in for years more pain, if she is wrong and I do what she wants I am in for years more pain.

Im scared, please any advice.

Thanks
Jon

Here is how he responded:

Hi Jon

You may continue to see Dr B and follow her recommendations, or you may return to my clinic.

........................................................................

Uh forgive me, but what are they saying, it appears they both disagree with each other. (no surprise here, specialists who disagree or misdiagnose) I am assuming he is saying he will continue to treat Crohns or have fun with the new GI....

Am I reading this wrong?