GINNY wrote:
> I have been searching the net for a year looking for pain support sites.
> I found several but it seems virtually everyone has pain related to back
> conditions or neuropathies. Until just now, accidentally clicking a
> hyper-link in an unrelated message I found a site that specializes in my
> problem.
>
> I am 45 and I have been through 13 major pelvic operations since 1980.
> The original one was an appendectomy that was nopt necessary, post op
> findings. I must have developed mild adhesions which caused moderate
> discomfort, but back in the 80's it was easier to get insurance
> companies to pay for major surgery than to foot the bill for a barrage
> of diagnostic tests, so every time I had abdominal pain I was admitted
> to the hospital and opened up from naval to pubic bone. I don't have to
> tell you that this created problems beyond the scope of understanding. I
> then developed a bowel obstruction from adhesive bands and had another
> operation. Finally, I went through an operation at a major university
> hospital performed by a surgeon that specializes in releasing adhesions.
> He thought it would be a 3 hour process. 10 hours later I was told that
> my abdominal cavity organs are displaced and that my bladder is so
> firmly embedded in my bowel that he could only free up 30% of the
> adhesions. He removed a portion of bowel that was pre necrotic and used
> a Baker tube to try and clear some of the banding around the colon but
> the results were limited to relief for less than 3 months. I now have
> been diagnosed with "Advanced Pelvic Adhesive disease with multiple
> neuropathies" (the 4 lb. mass of tissue and webbing is resting on the
> nerves into my thighs and down my legs)
>
> I was also told that further surgery for adhesion control only would be
> life threatening. My options are as follows:
>
> 1. Exoneration surgery....remove bowel, bladder and colon and replace
> with bags and tubes and spend the rest of my life like this
>
> 2. Pain Management
> I am in a PM program now for 6 years, on MS Contin and while it seems to
> control the bulk of the pain, I am uncomfortable about 60% of my day. If
> anyone can tell me of anything that may have come along in the way of
> treating my stage of adhesions in the last 8 years, please, please tell
> me. I cannot believe I may be on narcotics for the rest of my life, or
> that scooping me out like a Jack-O-Lantern is the only alternatives I
> have.
>
> Is there any place or any surgeon who has devised a successful
> treatment? I cannot believe they are actually subjecting healthy people
> to chemo for adhesions, but this is one thing that was mentioned to me.
> Is it true?
>
> I would give anything for anyone's feedback, and if you have no good
> news on the surgical side, your support and sharing of ideas with me
> would be forever cherished.
>
> I need to say one last thing....this is a God sent gift. I cannot
> believe there are actually other people with the same or similar
> conditions as mine and I am so lonely for someone to talk to, who can
> fully understand what this pain feels like.
>
> Thanks in advance to anyone who cares to answer.
>
> Ginny
>
> --
> Ginny H.
>