YOU are absolutely correct! You have brought out a fantastic topic that I think we both can really place some perspective for the other readers.
Condition validation is a horrific battle that needs to be won with each individual. The Doctors really want to believe if they cannot document our problem we have NO problems and just looking for narcotics. So they do the darvocet, ultram, or some anti-inflammatory instead of comitted pain management.
This is more the rule than the exception and for those reading along who have finally reached out to us here, expect rejection.
If I have to see one more psychiatrist, I am going to go postal nuts in the offiuce to justify the time spent with them. I am a woman, so therefore it is in my head, and out come the insults,"You having relationship problems or job issues?"--This makes me insane.
So what did I do, I suffered because NO ONE believes me! Why? Because I have a great attitude and just am not pathetic enough to believe because to see me live my life you would never think there was anything wrong with me. So having a postive attitude works againt pain management support with Doctors.
In Jan 2004 I was diagnosed with the fistula's. For the last 4 years I have been perscribe percocet by a primary Doctor that took my word on faith. I really thought I was blessed. Last Dec. he pulled the wool out and basically told me he had reservations about my need for continued pain management. I was devastated and had no idea how to prove my case.
Long story short, he ordered the most extreme work up, and I failed the upper GI and small bowel follow thru, the barium was expelled before it ever reached my right side of my colon. First time I actually was elated I failed a test but it was more like I felt relief because now they know I am not crazy making up stories. I have no reason to celebrate a double fistula finding but ya think I acted like I won the lottery.
Note, the test was repeated a second time that SAME day, and the test came back NORMAL and showed NO shortcut. Imagine had the first run at this GI test been normal, they would have NEVER believed I had fistula's. YET, even finding this finding, the CAT scan was normal, the barium enema was normal.
There is NO test that shows adhesions and Docs always want tests which would only show other organ compromise, it does not mean the adhesions are not freezing the bowel or yanking when we move.
In closing, my pain and my adhesions are really triggered by exertion and exertion topples the domino's when food is involved. [dumping] I failed the first GI test because there was a 30 min wait between films and I went into parking lot and walked around and around the building and let that barium slosh around.
BINGO, the walking agrravated the adhesions, the fistula's opened and it got documented on film. The second upper GI and small bowel follow thru they did 2 hours later was normal because I sat in a chair between films.
THIS is why alot of us have normal tests when we are quite ill. I would suggest any reader who has to have GI series, talk to the doc and radiologist, share your triggers and ask that these triggers be considered at the time of the test!
Understanding what sets our condition off is critical information for the Doctors. Pain mangement is everything, and if your Doctor is not comfortable with this idea then one has to go to a pain management clinic.
Once our Docs can believe in what we say, give us the pain management we have to have, the rest of the disease management is all up to us, and that decides qualtity of life :-))