I would like to add my $.02 worth: What Beverly has said in her message about adhesions (see her message which is below) is right on!! Beverly has spoken the truth about adhesions - in a far better way than I could.
How would I know that Beverly has spoken the truth about adhesions? I had diagnostic surgery done in 1997 which revealed to me and my gynecologist that I had massive adhesions which had attached my omentum to my abdominal wall - as a result of a laparotomy which was done in 1970. This was the very first time in 27 years that I had ever been offered diagnostic surgery ! Previously, I had been given every diagnosis - but the right diagnosis.
My recovery from my 1997 surgery was short-lived - on the 11th day after the surgery and since then, the chronic pain gradually increased in intensity . Since then I have tried to find a surgeon who would do another adhesiolysis. My gynecologist wouldn't!
Fall of 1997 we purchased a computer and signed up so that we could be on the Internet. I started doing research on adhesions - that is when I first learned that there was such a product as an adhesion barrier. I began to wonder if my surgeon had used either Interceed or Seprafilm - so I requested a copy of my surgeon's report - which revealed to me that he *did not* use an adhesion barrier. I did not know at that time that Interceed and Seprafilm were approved by the FDA for use *only* in open abdominal surgery (laparotomy).
As I continued my research on adhesions and adhesion barriers, I discovered that adhesions are the way the body heals itself - the way the body responds to injury. I soon discovered that there are many other causes for the development of adhesions besides surgery! Now my research had grown, from my initial search to learn everything I could about adhesions, to related areas such as: adhesion barriers and chronic pain. Since surgery is known to cause adhesions, I soon found myself learning about related topics such as endometriosis, fibroids, cysts, etc.
Since chronic pain is the common denominator, I also did research to learn what was available to alleviate pain - such as acupuncture and other alternative therapies - and also procedures such as presacral neurectomy, LUNA, OPERA, and many others. Now that I have taken the time to learn about adhesions and the other topics, I feel more confident whenever I need to see a doctor. I always had felt so intimidated by doctors before.
Now I also realize that it is not the doctor's or surgeon's fault that adhesions are so difficult to get rid of. Adhesions are perhaps the number one surgical problem. The majority of surgical patients never are bothered with chronic pain as a result of adhesions - but there is a small percentage of surgical patients, whose bodies (for unknown reasons) seem to develop a lot of adhesions which attach pelvic organs to other organs - which results in pain - chronic, unrelenting pain!
I am not sure I have been able to encourage you to begin to take charge of your painful situation by learning as much as you can about adhesions and other areas which are related to the kind of suffering you are going through. It is true that -
WHAT YOU DON'T KNOW CAN HURT YOU -- KNOWLEDGE IS POWER IN A DOCTOR/PATIENT RELATIONSHIP!!!!!!
- - - - - - - Beverly's message to Tina:
>If I may, I do think that there ARE answers for you! Please remember that
>this is just my impression of things, but I have, and continue to, study
>adhesion disorder in all aspects of its demand on ones life. I am well
>versed in not only the theory's of etiology (bio-physiological formation) as well as >the physical impact and involvement internally. That means dependent on >where YOUR adhesions are and the involement of organs, YOUR syptoms will >correspond with that involvement and once you can understand how all that >works inside of YOU, you can then relate better to what and why you suffer >what you do!
>The more educated you become as to the disorder that you are living with
>and unfortunatly, will continue to live with, the better you will handle
>things. Not only will that allow you to make educated decisions about
>your health care needs,communicate better with your attending
>physicians, it will also offer you a relief both psychologicaly and
>emotionaly, and that alone will give you some peace even with suffering
> I also do not believe that such a surgery as a bowel resection
>leading to a possible colostomy can be elective. No Dr. in thier right
>mind would agree on anything that extreme as it IS NOT in any patients
>best interest to have this radical of a procedure unless it is extremelt
>warrentd by a serious medical condition. Unfortunalty, adhesion
>disorder ( viewed as chronic pelvic pain syndrome ) does not fall in the
>catagory as well it shouldn't.
>I will conclude with this, if you DID present with a condition that warrented a >resection, you would still in all probability, and a high probability, STILL form >adhesions and still suffer chronic pain from them if the are problamatic ones.
>Tina, there IS no cure and to date only minimaly effective treatments are >avilable. The good news is that there ARE ways to effectivly learn to live with
>chronic pain and adhesions, there ARE!
>If you would like to discuss your medical case history further, you can e-mail Dr. >Wiseman as to my credentials to do that with you and then e-mail me at: >firstname.lastname@example.org
>Best of luck to you! Beverly
>At Thu, 10 Jun 1999, Tina Shelby wrote:
>>I have often wondered if all but about 10% of my small bowel was removed -
>>would I be better and what the percentages would be. I am interested in
>>knowing who told you that and what more did they say. I have been afraid to
>>ask about it as an option because it is so radical. I have decided that if I
>>have to have an open lap - I am going to want them to take most of the bowel
>>out. I nearly died my last abdominal surgery and I am terrified of having
>>surgery again. The next time will be because I have no other choice. Thanks
>>so much for the info.
>>At 04:58 PM 6/9/99 -0500, you wrote:
>>>Dear Brenda, when I read your note, I almost cried because I, too, HATE
>>that darn NG tube!!!!!! I can almost do it by myself. They are in shock
>>when I tell them which side to use and how to do it. As a matter of fact,
>>if they put it in a little ice, it goes down much better!! I hate it though
>>because it not only hurts my throat but my stomach too. It feels like it is
>>going to suck out my stomach. I don't know what is worse - it or the
>>blockage!!! When I am in that condition, instead of praying for pain
>>relief, I pray that He will just take me home and put my out of my misery!!
>>That way, I'll be in no more pain and I will be with my Mother, Grandmother,
>>Grandfather and Father. I am beginning to contemplate an ostomy (I think
>>that is how you spell it) you know, moving your bowels into a bag, but, I am
>>terrified of this alternative. I was told by someone that this may relieve
>>80% of my pain because the bulk of my pain stems from adhesions over almost
>>90% or more of my i!
>>>ntestines and 10% over my spine. I REALLY need some advice from someone
>>who has been there. Any ideas?
>>>>>> Brenda 05/02 11:45 PM >>>
>>>It is so good to have a site to go into and know that I am not "crazy",
>>>Every three months I too go into the hospital with a bowel obstruction.
>>>They make me lay there for days hoping it resolves itself, this has been
>>>going on for 3 yrs. since my last major surgery.
>>>Trust me I do NOT want to have another surgery but I also do not like
>>>having that NG tube put it and laying there in the hospital being so
>>>sick you pray to god to get rid of your pain.
>>>Lets stick together everyone, there has got to be some hope out there
>>>for all of us!!!!!