My letter to the government (Jean)

From: Jean Long (creative@enter.net)
Thu Jan 3 17:05:42 2002


I had adhesions for 10 Years before detection. I have now suffered with adhesions for about 30 years of my life (I am almost 53 years old).

My problems all started due to my giving birth by an emergency C-Section and it has been a down-hill roller coaster since then.

My incision had gotten a very serious infection and my abdomen burst open from it.

Adhesion Related Surgeries: 1982, 1985, 1986,1989, 2001.

I was diagnosed on April 5, 1982 after I had to "demand" a surgeon to perform exploratory surgery! Until that time I had NEVER heard THE WORD ADHESIONS from anyone, including many doctors I had seen! At that time I could not eat more than a piece of bread a day and even that regurgitated and I felt like I needed a plunger to get that in me. I also could not move my bowels for 2 weeks!

The Gastroenterologist did tests which of course were negative and was going to release me from the hospital in that condition! That is when I demanded a surgeon for exploratory. I was loaded with adhesions and had partial bowel obstructions.

One by one adhesions engulfed my womanly organs and restricted them from function so over 3 separate surgeries I lost all of them at a very young age.

I am also now addicted to laxatives for most of my adult life and need 10 Herblax every night in order to go at all. It is all because of the partial bowel obstructions I had for most of my adult life which I received no help for from the medical profession. Instead it was more convenient for the to blame it on my nerves and whatever else they could dream up.

I finally had to help myself if I ever wanted to go to the bathroom. I had done everything they told me to and tried everything they told me to do.

I was NEVER told about ADHESION BARRIERS or anything else to prevent adhesions from reforming. As a matter of fact I have always been treated like the word "Adhesions" is a swear word.

I have had MANY doctors in my time due to multiple problems and 18 surgeries, NONE of which even want to talk about adhesions and avoid it at all cost! I have been laughed at and sneered at for even mentioning it. They make me feel embarrassed and ashamed for even bringing it up. I have been told "everyone gets adhesions from surgery and it is a totally normal, etc., and it is not an illness, disease or affliction. They all seem to agree with one thing "Adhesions don't cause pain", or so they say, although I don't think they have ever had them to personally know. Maybe the actual adhesion isn't painful but the organs that are being mutilated and pulled out of normal positions sure do!!

The times they did agree to operate and help me (temporarily) were only because there was a problem with my womanly organs. If it had only been pain related and not preventing my ovaries etc. from functioning they would not have helped me. My last surgery did not involve womanly organs since I don't have any and even though I did have adhesions adhering organs to other organs on the OR Report it says "No abnormalities found". The adhesions were totally made light of just like it was nothing!!

Adhesions have pretty much destroyed my life. Adhesions are an every day battle and also an ongoing expense, not to mention the constant pain and bloating, constipation, regurgitation and heartburn. I can't hold down a job anymore but also can't collect disability. My poor husband has to work 2 jobs to carry my weight and also do 1/2 of the household chores due to my disabilities. I was always a very hard working go-getter type person! Now every day is a challenge just to make it through another day doing minimal activities. I don't have much social life at all anymore because I am not physically capable of doing anything with friends and family. Sitting at a Diner to eat with friends is about all I can handle and sometimes not even that.

I feel like I am old way before my time. My future, or lack of one, scares me to death. It doesn't matter how many times you have surgery for the adhesions they always return sooner or later, most likely sooner, and allot of times worse than before.

Something has to be done to help people afflicted with adhesions and/or to help prevent them in the first place!!

Sincerely,

--
JEAN L. LONG
Shoemakersville, PA

-----Original Message----- From: adhesions@adhesions.org [mailto:adhesions@adhesions.org]On Behalf Of Helen Dynda Sent: Thursday, January 03, 2002 6:54 PM To: Multiple recipients of list ADHESIONS Subject: Re: one more test

Jean,

No, you weren't being banned from posting messages on the Message Board; but, of course, I can't explain why your email did not appear.

I always address my email messages: adhesions@obgyn.net

Jean, please consider sharing "your letter to the government" on the Message Board. Your letter IS excellent!!!

Helen D.


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