I can relate to your frustration. Although I will say that you are one step ahead of me in that you seem to at least have received some acknowledgment that you in fact do have adhesions or at least have some type of blockage due to something. All I can get from doctors is the cop-out diagnosis of IBS, which I believe is not a diagnosis at all in most cases.
However, it amazes me to hear of the so-so attitude about patients like you who go for extended periods of time without proper evacuation- how can this not be serious at some point? And when will you know if you've reached that point- it could be way too late, assuming something obvious doesn't happen to make them pay attention in time. And removing this essential organ- which I've heard has been suggested to some- is insane (just like hysterctomies in many cases) unless it is cancer.
I don't know if you've been given the cop-out diagnosis of IBS- for which the current Rome criteria doesn't even cover all of my symptoms. You know how you always hear how IBS is the most diagnosed GI disorder? I firmly believe this is because it is in fact not a diagnosis at all- it is used to get rid of difficult patients rather than spend the necessary time to do in-depth studies to find out what is wrong. I consider the number of IBS cases to be a measurement stick of the lack of time the medical system is willing to spend with patients- the more cases of IBS, the more low-quality, inadequate medical care and rushed appointments are occurring. And the lack of time to really listen, understand and make use of the information a patient provides- what the patient has to say should be equally, if not more important, than what is shown on a test or x-ray.
Doctors do not listen, again because they do not have the time as they are supposedly required to see as many patients as possible at the expense of quality care- so I guess it is the fault of the clinics as well as possibly trying to please the insurance companies by doing as little as possible. I can usually tell in the first 1-2 minutes of a visit with a new doctor that they are not interested in helping me- this is frustrating because I always spend days and nights before appointments trying to figure out how to describe things in a way that they will understand. I pay the higher insurance premiums so I can get the doctors and in-depth treatment I feel I deserve, but so far it has done me no good whatsoever. There is a doctor I want to try going to now but apparently he only takes referred patients-even though my insurance does not require a referral!
I always knew doctors didn't listen, but I didn't realize how bad this was. Recently, I have been sending for copies of my medical records so I can copy them myself as needed- I figure this is easier than repeatedly sending for them every time I see a new doctor- which can be often as my relationships with any one of them does not last very long. They quickly turn hostile when I demand they listen to me and address my issues.
Anyway, there are a lot of inaccuracies. For one thing, more than one doctor said I complained of pain on the left side- when in fact my main issues have always been on my right side! Another one said I was being treated and followed by a gastoenterologist that I saw twice a couple of years ago who did a couple of tests and sent me on my way. Another said I had received expert evaluation by a urogynecoloist who spent a few rushed minutes with me and did absolutely nothing but recommend physical therapists.
I did in fact go to 2 physical therapists who immediately commented on how extrememly tight my abdomen was- and they suspected adhesions. Well, all of the doctors I saw said my abdomen was soft and non-distended, of course! And from day one of this problem in 1984, I have told doctors how tight and distended things feel and that I suspect narrowing issues.
Also, a psychiatrist I had seen, due to problems with co-workers and other people due to resulting symptoms, claimed I had body dysmorphic disorder- i.e, I'm imagining the symptoms and the resulting social problems they incur. In other words, it was all in my head.(Supposedly this body dysmorphic disorder has been attributed to Michael Jackson's having multiple cosmetic surgeries- he imagined facial defects that are minimal or not there in the first place)
It is amazing how- when this psychiatrist wasn't even present at my job
or whatever, that he automatically assumed I wasn't telling the truth! I
would have liked to have said, 'OK doctor, how do I prove it? Are you
willing to work undercover at my place of work to witness what I go
through on a daily basis for this?' Of course, he gave me no chance to
argue with him. Arrogance at its fullest- deny the problem so you don't
have to work to solve it! How can anyone help you when, IF they even
bother to listen, they insist that you are not telling the truth? We
simply cannot get help from any aspect of the medical system- physical
or mental! I will not be copying and forwarding this part of my records
for future medical visits- if I do, I will definitely be out of luck
before I even get there if doctors read this garbage!
>BBLDEB@aol.com
>Sent: Wednesday, April 22, 2009 8:58 PM
>To: adhesions-request@adhesions.org
>Subject: Re: Link I gave in previous post stopped working
>
>JetStamp...
> Just wanted to say that it is typical for doctor's to think that way.
>The problem is that they are not used to dealing with the adhesions, and
>most that say it aren't surgeon's. Which says a lot in itself. Any good
>surgeon knows that adhesions will form within 3 hours to 7 days Post-Op or
>Post injury...... I think this is one reason that so many
>doctor's say that "US" as patients are either : "Out of our minds", "Have
No
>Life other than to think of ways to get pain meds (drugs)", "need
>psychiatric evaluations and help", "think of ways to get away from home or
>daily lives", "make things up to get disability" etc... I have heard and
>seen so many excuses. None of which are true. Hard to
believe that a
>little small scope in the abdomen can say alot for itself, if only a "GOOD"
>doctor would be willing to go the small step and just "LOOK"...... I have
a doctor right now that
>actually wants me to wait till I am "Almost Dead" and have a "Total
>blockage" before he will even "LOOK" to see what is going on with me And
he also did
>my gastric bypass, but didn't look in the abdomen to see if there was any
>"ISSUES" that needed tending to. I have tried to show him and prove to him
>what is wrong, So he chooses not to do anything. And I am left with
>the circumstances from it......
>
>.....the only thing we can do is hope to find a doctor that ACTUALLY knows
what
>he is talking about and is willing to LISTEN to US for a change and help us
>the way that needs to be helped
>~Debbie