Re: new member uk

From: Bernie and Beverly Doucette (bnb@cybrzn.com)
Wed Oct 4 07:53:53 2000


Dear Kathy,

My name is Beverly J. Doucette and I am an outreach volunteer for the International Adhesion Society. I do not have an Atlas in front of me as I am doing this letter, BUT, I think that UK means the Ukraine, is that correct? What is your location logistically from Ireland or Germany? I ask this as we have a wonderfully skilled surgeon in each country as well as two in the USA who can offer much relief from suffering of adhesion disease.

I want to offer you hope, Kath, as there is so much available today that was not available ( at least not known to us who suffer ARD ) that an adhesion sufferer can take advantage of to find some pain relief.

Kath, there are medications that need to be taken on conjunction with one another if an adhesion sufferer is to find some degree of decrease in their pain...one must be on at least 1600mgs of anti-inflammitory medication like LodineX or Celebrex as well as an analgesic ( pain med )..if an adhesion patient is not treated for inflammation and only with a pain med, they will not even have a semblance of a chance to find a decent degree of pain relief...we call the mixture of medications a" cocktail " as it is mixing a few medications together....and...please keep an eye on any type of" heartburn " or Gastroesophogeal reflux disease or GERD! This is a burning of the esophogus and or stomach due to irritaion of same from medications etc. This " burning " sensation can be exasperated by things you eat or drink, such as coffee, chocaloate, at one time even water caused my GERD to be increased! If you are or do experience any of those symptoms, get to your personal care provider ( PCP ) to get you a prescritpion of Prilosec! We can discuss this in detail in the event you do experience it.

When I saw there is hope for you, I am not saying that you will be pain free even if you do have an adhesiolysis, I remain 90% pain free following my adhesiolysis with Dr. Reich, but I do have some pain. Not enough to even cause me to take one single pill, ( well I do take the Prilosec as GERD takes much longer to heal once you have it, it is annoying, but to me it is not painfull!! ) I had hoped for a 50% decrease in pain when I went for my surgery, so to be able to live like this IS living life to the most!!

You can start to plan to get to one of these very skilled surgeons in your future...that is the hope you have...ARD today does not have to be fatal, it will be disabiling until you can make arrangements to get to one of these surgeons..and even if it takes a year or two...it is still a hopefull situation today!!

Just when you think there will be no way you will get to one of these fellows...keep your faith and trust that if you keep looking ..the door will open for you to get your surgery and a chance at regaining some of your life back!

In the mean time...keep this door of support open my dear...

In friendship Beverly

>----- Original Message -----
From: Kath Findlay <klfindlay@yahoo.co.uk> To: Multiple recipients of list ADHESIONS <adhesions@mail.medispecialty.com> Sent: Tuesday, October 03, 2000 5:58 PM Subject: new member uk

> Hi My name is Kath,
>
> I am from Scotland, UK. I put my name on your quilt a few weeks ago. My
> husband had found your sight the night before we went on holiday to the
> USA, so my message was quite rushed. When I got back last weekend, I
> had received over 300 e mails. Like most of you I felt that I was very
> alone. Adhesions are not a recognised problem in this country and I
> strongly believe that there are thousands of people here suffering
> alone. I had quite a traumatic time getting Doctors to believe that it
> was my adhesions that were at the route of my pain. My local Doc is
> very sympathetic to me. I think he feels as helpless as I do. He has
> known me for many years and watched me go from being a very busy
> business woman to being an invalid. He fought very hard to find a
> surgeon willing to take the risk of operating on me in Feb 98. I think
> they are afraid that you will hold them responsible if your adhesions
> return. I have re written my story for your quilt in the hope that I
> can help others who might find themselves in a similar situation. I am
> afraid it is a bit like the book war and piece, as it spans thirty years
> of my life.
> I really appreciated your letters. I learnt quite a lot. At the moment
> I am taking morphine for the pain, but I am very interested in the
> Fentanyl patches that some of you are using. I was also pleased to know
> the names of your of your two special doctors. I just wish I had known
> them before my trip to USA. I feel that I can identify with a lot of
> the things that you have mentioned.
>
> Zoe,
> I read your letter and I think I would follow the advice you received
> from Karla. I had two babies while having severe adhesions. Don't give
> up its worth it in the end. Just don't let them talk you into a
> hysterectomy to cure your adhesions, without getting a second opinion,
> or ten. You said in your letter that your doc gave you information
> about barriers, I would be interested to know what. When I had my last
> op in 98, I asked about gortex, which was all that I had heard of at the
> time and he said that my body would probably reject it. Since then I
> have heard a little about intergel. If you or anyone out there can tell
> me what barriers are being offered and if they work I would appreciate
> it. Thanks,
> I wish you Good luck !
>
> Beverly,
> I love your sense of humour I think when you are feeling down its good
> to laugh and you help to make people forget their pain for a little
> while. I wanted to ask you if your adhesiolysis procedure that you had
> in 95, was done by laparoscope's, and was it done by a different Doc to
> your one in 99. My last three separations were all done by open
> surgery. The first one gave me 4 years pain free. The second gave me
> almost 3 years and the last one,1 month. They were all performed by
> different docs. The last one was performed by a bladder specialist,
> neither of the other two would risk performing it again. They said that
> the chances of it returning was extremely high. I felt that I would
> rather have 2 or 3 years pain free than 10 to 20 years in pain. I will
> have one last separation but not until I have gathered enough
> information, so that I can be in control of the outcome not a lot of
> inexperienced docs using me for experiments.
>
> A little bit about myself, you are probably thinking that I have said
> enough already. Sorry, just thought it would help to know what I am
> like as a person. I hope some of you will return a story about
> yourselves. I am 49 years old. I have been married to Dave for 31
> years. I have 2 children, Kris who will be 21 on Christmas eve and
> jemma who was 17 yrs past July. They are both away at university in
> Edinburgh which is a 4hr drive away. For the past 12 yrs we lived in a
> lovely Victorian house where we ran bed & breakfast, it was my pride and
> joy. I also ran an au-pair agency, so you can see, I was a very active
> person. This disease has turned our lives upside down as I am sure a
> lot of you are in the same position. We have had to move to a much
> smaller house. My husband also had a very good job that he had to give
> up to look after me. Most days I get up at about 10am. David does all
> of the shopping and all household chores. I don't know how I would
> manage without him. I like to paint, read, write on my laptop, you've
> guessed! but most of all I like to work on my dolls house. I am able to
> drive the car short distances and I can only walk short distances. I am
> just getting used to being in a wheelchair, and although I am not as bad
> as Karla, I feel for her frustration. I worry about the uncertainty of
> the future and how much more pain I can stand. I worry about the damage
> being done to my body taking long term medication. No one seems to know
> much about this disease. Some won't even believe it exist. I have so
> many questions that no one here in the UK seems to be able to answer. I
> don't feel so alone and helpless, now that I know that there are people
> out there who understand how I feel. I hope i can be of help to some of
> you.
>
> Thank you all for listening, now that I have got all this out, I will
> keep it short next time. Karla, I wish I could say something to make
> you feel better. I feel there are a lot off people out there who care
> about you and will miss your chat. In the short time I am with you, you
> have touched my heart. I hope you will be back to chat soon as I think
> your knowledge will be very valuable to others. I believe we will be
> running about like Bev one day. Its just not our turn yet.
> Love to you all
> Kath
>


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