Re: I am an expert on abdominal adhesions as I've lived with them

From: michele (team1rules@gmail.com)
Mon May 18 17:51:43 2009


Dear Bill, My name is Michele and it seems as if we are living the same life, you are NOT alone. I had a surgery "gone wrong" in 2000. It was to remove adhesions from a previous C section, I was experiencing at that time what i thought was pain, and now i wish i could turn back the clock.To shorten a very long story, a colostomy for a 28 year old woman doesnt do much for your marriage. The doctor butchered me, had to take out my entire large intestines, ate baby food for 2 yrs. divorce came, as did loosing my career, and e.r. visits ruled my life. more surgeries for bowel obstructions, this list goes on. Sat in court and told my story for my medical malpractice case, and watched him walk out being found not guilty. the judge apologized to me. His attorney apologized to me for my pain. I'm 36 now, and have found my ways of coping. There are also those very dark days where you wonder why. why me, this isn't what life is supposed to be like. Pain like ours is sometimes unbearable, and if you cant see it on an xray, well, were out of luck. I have just had a port implanted in my chest (quite attractive) for extra hydration. I have to be at a cancer center 3 times a week for infusions, and it does help with the pain, i dont know why, but it does. Its the only thing I can do that will help me not become a drug addict, but i will tell you the best benefit of all, is seeing those cancer patients, and realizing that they are fighting too. Adhesion pain hurts like hell, but it hasnt killed me yet. These people are fighting for their lives, and i thank god i am getting fluid and not chemo when i walk in there. Some one always has it worse, I try to look at things that way, trying to stay positive is hard for all of us, but life still has a lot to offer. You are a survivor like the rest of us, give yourself some credit. you will be in my thoughts and i hope you find the joy in life you truly deserve. hope to hear from you michele

At Thu, 14 May 2009, Bill Murphy wrote: >
>I was a healthy adult male, 37 years of age in August of 1994. Happily
>married, two children, coaching high school football, baseball, as well
>as coaching boxers as a certified USA Boxing Trainer. August 30, 1994 I
>was rushed to the hospital in what at that time was the worst pain I had
>ever experienced. After hours of debate a surgeon finally diagnosed
>appendicitis and scheduled me for surgery 12 hours later.
>When the surgeon finally opened me up he found the appendix had
>ruptured. From what we were told "off the record" by a neighborhood
>nurse who witnessed the operation, the surgeon panicked. He could not
>find the appendix and began opening me up all over the place internally
>trying to clean out all the infection as well as find my appendix.
>During this stay in the hospital the infection almost killed me. I also
>developed a bowel obstruction which needed to be corrected. A drain was
>inserted to help deal with the infected site. Three weeks later and
>after many "NG Tubes" and a and a "Canter Tube" I left the hospital in
>tremendous pain having lost 42 pounds.
>
>For six months I was in several abdominal pain that no doctor would
>address. It was at that time I was rushed into the hospital again with
>the same type of severe pain that caused my first emergency surgery.
>They found a small bowel blockage and dropped a Canter Tube in an
>attempt to resolve the obstruction. At about midnight my wife found me
>unconscious. My lips and fingers were blue and they could not find a
>pulse. I was rushed into surgery, adhesions were found to be causing
>the blockage and they were lysed. I again developed a post-op
>infection, another partial bowel obstruction, more cutting to lyse
>adhesions, and then left the hospital about a month later having lost 40
>pounds and again in severe pain.
>
>In an attempt to shorten this story I'll just say that more abdominal
>surgeries over the next 5 years one correcting a hernia while the others
>attempting to eliminate the adhesions, I still suffered from severe
>abdominal pain. The surgeon who performed the last surgery attempted
>laparascopic entry but had to resort to opening me up completely as the
>adhesions presented problems for the scope. Following the operation
>this surgeon told me to never again attempt to resolve the adhesions via
>surgery. He strongly suggested that I stop hoping for solutions and
>begin to focus on "this is your life" and how best to live given the
>situation.
>
>The next several years were spent receiving higher dosages of pain
>medication along with other trials on different meds while spending time
>with every reputable pain management center in New England. A couple of
>the best hospitals in Boston Massachusetts tried to provide relief via
>their Pain Management Centers only to come up empty handed.
>Again, in the end, I was advised to begin focusing on how best to live
>with my "condition" and stop hoping for a correction for the problem.
>In 2005 I was a frequent visitor to the emergency room at the local
>hospital. In addition to seeing counselors on a regular basis I was on
>160 mgs of Oxycontin three times per day, 8 mgs of Dilaudid every four
>hours as needed, and a whole host of non-pain focused meds. I tried
>every type of physical therapy in existence. I even saw a physical
>therapist for two years who would stretch me in severe, unnatural
>positions to the point bands of adhesions would actually tear during
>therapy. It was some of the worst pain I've ever experienced. Needless
>to say the adhesion problem simply continued to get worse.
>Due to my fairly consistent "zombie" state my wife divorced me. The
>woman who I had spent 30 years of my life with walked out as she could
>not take it any more.
>
>Jump ahead a few years. It is now 2009. I haven't made any progress in
>eliminating the adhesions. I still live with what my primary care
>physician refers to as "911 pain".
>
>On a positive note however and my real purpose for posting this comment
>I have made some progress in dealing with my pain, all based on my own
>research.
>
>First, I could no longer stand the state in which the pain meds left me.
>I worked with my doctor to slowly cut down on the pain meds even though
>it meant having to deal with more pain. To be honest, I'd rather be
>more alert and not have to deal with all the terrible side affects than
>deal with the quality of life the pain meds left me with.
>
>Second, I read a few articles on some people finding varying levels of
>relief using EMS (Electrical Muscle Stimulation) and TENS (some sort of
>nerve ending electrical treatment). I invested in these machines myself
>and use them at home at least several times per day. It IS NOT a cure
>but it definitely helps you deal with the more severe episodes of pain.
>I would strongly recommend everyone get off as much pain medication as
>they can stand. The side effects of these meds are worse than the pain
>! I would also strongly recommend everyone invest in EMS / TENS and use
>it religously. It's a struggle but if you stick with it and have much
>support from family you can improve your quality of life.
>I lost almost everything that was dear to me. My lovely wife, my job
>(I'm permanently disabled), my High School coaching positions in
>football and baseball as well as my career training boxers - something I
>loved with a passion.
>
>But I'm still here. I very rarely go to the hospital anymore as I can
>no longer deal with certain doctors who refuse to recognize the painful
>condition that can result from adhesions. I pray everyday that one day
>my ex-wife might give me a chance to be a friend to her. I live life
>one minute at a time never looking beyond that horizon. It may not
>sound like much of a life but it's all I have at this point so it's what
>I do.
>
>I'm 51 years old. I'm not sure how long I will live as my life is more
>of an existence at this point rather than *living*. I assume at some
>point I will take my own life. Until then however, I'll continue to
>live life one minute at a time, the only way I know how.
>Good luck to all out there who suffer from this misunderstood and often
>times ignored *disease*.
>Bill Murphy


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