In Friendship Katherine Findlay United Kingdom Adhesion Society mailto:kath.findlay@adhesions.org.uk http://www.adhesions.org.uk
-----Original Message----- From: adhesions@adhesions.org [mailto:adhesions@adhesions.org]On Behalf Of GINNY Sent: 01 May 2001 06:46 To: Multiple recipients of list ADHESIONS Subject: THANK GOD I FOUND YOUR SITE
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.