Many people think that the UK is backword in information about adhesions and that there are no surgeons experienced in adhesiolysis procedures. Before I became coordinator for the UKAS site I thought the same. Now I know different and I feel that It Is my job to set the record straight. There are many surgeons in the UK experienced in Adhesiolysis procedures and a great deal of the statistics we are using on the IAS and UKAS sites come from The Scottish National Health Service. One of our main experts on the IAS board is from the UK. Some of the barrier methods being used, are made in the UK, Interceed, Seprafilm and others. Its only because in the past we have not had a site of our own to advertise these things to patients and GPs alike. I hope that now the UK site is up and running, we will be as successful as our American sticky friends in conquering this very misunderstood disease.
I will be puting out a joint flyer very soon with David Wiseman explaining all about the UKAS site but until then if anyone wishes to register they will find it on http://www.adhesions.org.uk
Or if anyone would like any info, or people in the UK to post to, you can e mail me at klfindlay@adhesions.org.uk and I will send you a list.
In Friendship Kath Findlay.
-----Original Message----- From: adhesions@adhesions.org [mailto:adhesions@adhesions.org]On Behalf Of jackie Sent: 07 December 2000 21:36 To: Multiple recipients of list ADHESIONS Subject: Re: NFORMATION>>for Teresa>>for everyone: Prescriptions, Surgeons, Adhesion Barriers
At Sun, 12 Sep 1999, Helen Dynda wrote:
>dear helen dynda or anyone that can help me,
I have undergone 17 operations in the last five years.2years ago I had
an operation to remove extensive adhesions to my bowel this gave me
18months reasonable quality of life BUT since July 2000 I have
deteriorated rapidly the pain in my abdomen is absolutely ecrutiating,
and immence swelling. It is not the passing of motions but the pain
after doing so,my surgeon says he won't perform another operation unless
I have a clinical obstruction. how am I supposed to know when this
happens as all the symptoms that you are supposed to display when there
is an obstruction I am suffering. I am now on morphine to try to ease
the pain but they only just manage to keep it bearable. I CANNOT do
anything physical like the simplest of household tasks and I have lost a
stone in weight since october because I find I cannot keep my food down
apart from that I have no appetite, this was before the gp prescribed
morphine. I cannot walk even the shortest of distances and I feel that
I will have to use my wheelchair again as I did 2 years ago. Having 2
children and a husband who I must say are extremely supportive, but this
makes things even harder because I try to do the things a wife and
mother should be able to do. I am really scared that I am losing so
much weight, as before I went down to 7 1/2 stone it was only then that
the surgeon decided he would operate to remove these adhesions. People
just dont understand how debilitating this problem is. I am in bed 22
hours a day as this is the only position that it relatively
comfortable.I'm constantly vomiting again even before the morphine and I
am Just not only PHYSICALLY tired but emotionally Tired as well. NO I'm
not suicidal but am DESPERATE for someone to be able to help me. Perhaps
clutching at straws, there might be someone who reads this that can help
me out with my situation. Im in Pain 24/7 and it really is dragging me
down. my daughter even said mum I wish you were like other mums being
able to take me to school and interact with the other mums. Imagine the
guilt. I can't even cook a daily meal as the physical strain makes the
pain unbearable.
IS THERE ANYONE OUT THERE THAT CAN HELP ME? I'm 38yrs old and I've got
so much I want to do with my life but cant.
Thankyou for taking the time to read my plight but who knows there might
be just one person who can change my life. I do hope so.THANKYOU.
JackieB.SURREY.ENGLAND
>Teresa,
>You have certainly gone through alot!! YOU ARE NOT GOING CRAZY!! You are
>just another victim of the medical profession - of medical professionals
>who have a difficult time accepting that ADHESIONS DO CAUSE PAIN. At
>least that would be my non-professional guess as to what is causing you
>pain.
>
>I have used the directions for PRESCRIPTION DRUGS, which I posted today,
>to do a search on the drugs which you listed: Keflex and Robaxin.
>
>Keflex is a Beta-Lactim Antibiotic and Robaxin is a skeletal muscle
>relaxant. Neither drug is a pain-reliever! No wonder you are having
>pain!!!!!
>
>Both Keflex and Robaxin are Brand Names - which means they are more
>expensive than the generics.
>
>Cephalexin is the generic of Keflex. Methocarbamol is the generic of
>Robaxin.
>
>I suggest that you read the information for both of these prescription
>drugs at the Planetrx site. If you have any trouble following the
>directions, which I have posted today, you can write to me personally at
>the above address.
>
>Since your adhesions are attached to your small intestine and colon,
>unless you are able to find a doctor who specializes in doing surgery
>for adhesions, it would be very unwise to have just any surgeon do an
>adhesiolysis for you.
>
>* * SURGEONS WHO SPECIALIZE IN ADHESIOLYIS SURGERY * *
>
>Surgeons, who specialize in adhesion surgery (adhesiolysis), use
>microsurgical techniques.
>
>These surgeons do many more of these kind of surgical procedures - day
>after day - in comparison to regular surgeons.
>
>These specialists have developed special techiques - which they strive
>to improve on from one adhesiolysis to the next one.
>
>A surgeon, who specializes in this kind of surgery, must be able to have
>the virtue of PATIENCE because these kind of surgeries can take many
>hours to complete. These are also very risky surgeries for the surgeon
>to perform and especially for the patient.
>
>I had an appointment to talk with a colon-rectal surgeon at the Mayo
>Clinic in January 1997. He said that he *would not* do an adhesiolysis
>for me - unless
>I, as his patient, were having a bowel obstruction. He did not advise
>surgery!!!! So what is there left to do? PAIN MANAGEMENT -- and this is
>what doctors at the Mayo Clinic advise patients, who come to them with
>adhesion problems.
>
>This does not necessarily mean that these surgeons do not believe that
>adhesions do not cause pain. It means that surgeons have learned
>through many failed attempts at adhesiolysis, that adhesiolysis is not
>the answer *at this time.*
>
>Considering the risks involved, surgeons do not encourage surgery for
>adhesions at this time. There is not an adhesion barrier available yet,
>which has been proven to give adequate protection from the
>re-development of adhesions. Our bodies are in control. Adhesions are
>how the body heals itself.
>
>* * SO WHAT AM I DOING? * *
>
>So what am I doing? Since January 1997 I have been seeng a psychiatrist,
>who specializes in pain management, on a regular basis. She has
>prescribed Carbamazepine (200mg) for me to take in the morning - and
>400mg of the same drug for me to take at bedtime. Carbamazepine is the
>generic of Tegretol.
>
>In January 1997 she prescribed Amitriptyline (100mg) for me to take at
>bedtime. Amitriptyline is the generic of Elavil. Amitriptyline was the
>*first and only* medication which had given me any relief from pain back
>in 1975 - after having suffered from very severe intractable pain
>following surgery in 1970. This drug is an anti-depressant and it has
>also been recognized to relieve pain.
>
>I also see a psychologist on a regular basis for talk therapy - about
>how pain has affected and is affecting my life; and also so I can share
>concerns in a safe environment - instead of "stuffing them" and never
>talking about them.
>
>I have also allowed myself to become involved with life again - instead
>of isolating myself and suffering in silence. I have joined a Weigh
>Down Workshop group for weight reduction. I teach piano lessons to
>young people, teen-agers, and adults. I am the accompanist for our
>church choir.
>
>As I've said before, I have been doing a lot of research on the
>Internet. In the process of researching, I just recently learned that
>there is psychological term for doing something like: It is known as
>DISTRACTION. It really works!! As I have been absorbing all of this
>information, DISTRACTION has been keeping my brain so busy that it has
>prevented the full impact of pain-messages from reaching my brain. I am
>a firm believer in the mind-body concept. In order to accept the
>mind-body concept, it was necessary for me to read about it and take
>whatever time was necessary for me to understand and accept it - which
>has taken me a long time!
>
>* * ADHESION BARRIERS * *
>
>Some of surgeons use adhesion barriers. Some have made a decision not
>to use the adhesion barriers which are available now - because of the
>less than satisfactory results which surgical patients have had with the
>application of an adhesion barrier. The use of an adhesion barrier does
>not guarantee that adhesions will not return!!
>
>Both INTERCEED (TC7) and Seprafilm adhesion barriers have been approved
>by the FDA for use in laparotomy surgery (open abdominal).
>
>Although there are some surgeons who have learned how to apply Interceed
>laparoscopically, Interceed has not been approved by the FDA to be used
>in laparoscopies. Seprafilm cannot be applied laparoscopically.
>
>* INTERCEED (TC7) *
>
>For Interceed to be effective, there must not be any blood left in the
>abdominal cavity.
>
>* SEPRAFILM *
>
>Seprafilm's texture is something like waxed paper. It is brittle and
>once it is moistened, becomes sticky and unmanageable for the surgeon to
>use.
>
>I am not an expert on the above subjects. The information, which I have
>just shared with you, is based on the research I have done on the
>subject of adhesions and adhesion-related topics - which I started
>almost two years ago.