Re: My experience being repetitively misdiagnosed -- in case it helps anyone
From: Peggy (pklippe1@nycap.rr.com)
Sun Sep 12 08:23:29 1999
At Wed, 8 Sep 1999, Josh wrote:
>
>To whoever may see this,
>
>I am in my mid-20's. I had an experience with post-surgical adhesions
>and small bowel obstructions that would have destroyed my life had I not
>done research, found out a good deal, and called in new doctors. I'm
>now in the best health of my life, and coming up on a year -- longer
>than the entire length of time encompassing my 4 surgeries for
>obstructions. I don't know that my experience can help anyone. But it
>may, and I want to throw this out there just in case.
>
>The idea: the surgeon working on me told me the problem was
>post-surgical adhesions that, she said, there was very little to do for.
>Each time I had emergency surgery, then came back for another a few
>months later. In the end, it turned out ADHESIONS WERE NOT MY PROBLEM
>-- at least not the main source of the ailment. When new surgeons
>discovered what was really going on, they fixed it simply.
>
>Here are some details: I first had a small bowel obstruction in late
>1997, and had emergency surgery. The surgeon told me simply there had
>been a "kink" in my intestine, which she basically popped back open. But
>within weeks I was sick again, and in a couple of months had the
>emergency surgery again, this time back at home with another surgeon.
>This second surgeon told me there had been a great deal of scar tissue,
>which she took out. But a few months later I was sick again -- with yet
>another obstruction. Another emergency surgery. This time she said
>there had been scar tissue again. She said all we could do is hope that
>someday my scars grow in better. (I showed her research on seprafilm
>and other new technologies, but she was not interested.)
>
>Before I bore anyone with details... my girlfriend, sister and I did
>our own research and discovered that these new technologies could help.
>That led me to find new doctors who were familiar with the technology
>(seprafilm specifically). When I got sick again, and needed a fourth
>emergency surgery (10 months after the first), I called them in.
>
>These surgeons found that MY PROBLEM WAS SOMETHING ELSE. I had a mobile
>cecum. The cecum is a part of the intestine that's supposed to be
>attached to the abdominal wall. My omentum (called the "policeman of
>the abdomen," which connects itself to anything that might cause an
>infection) was then wrapping itself around my cecum and pinching it off.
>Likely the cecum had been a problem all my life, but at some point had
>become completely mobile. They said the previous surgeons should have
>recognized this and fixed it immediately.
>
>These surgeons tacked down my cecum; removed my omentum; removed my
>appendix; and used two layers of seprafilm to cut down on post-surgical
>adhesions. I recovered twice as quickly from that surgery, and have
>been healthy ever since.
>
>Of course, I'm aware problems can strike. But I face the world
>differently now, with the expectation that I'll be healthy, rather than
>the fear that an obstruction could strike at any time.
>
>I realize this does not describe the experience of most people on this
>board. But in case it helps anyone at all, I wanted to put it out
>there. Get experts, get other opinions. Have people who know what to
>look for see if there are any other problems going on.
>
>I wish everyone good luck dealing with the ordeal that this can be.
Josh,Thanks for your success story it does give some hope to know that
someone has been healed.Best of luck in the future that everything stays
as it is now.Peggy