Re: Barium enama and adhesion>>Thanks Bev for wise suggestions about surgery for adhesions!!!!

From: Bernie and Beverly Doucette (bnb@cybrzn.com)
Tue Nov 30 13:55:42 1999


Helen and all... Helen, within your suffering, you reach out with such kindness, such support and encouragement..and education beyond expression! How many times I have turned to your network of material as I assist a fellow adhesion sufferer...to many times to count!! Thank-you for that! With every posting you place, you are offering someone a chance not to have to walk the rough road we walked before there was ANY, and I mean ANY mention of ARD (adhesion related disease)...heck, Helen, it didn't even have a name! May you be blessed with enough strength and perseverance to continue reaching out through this society as you are the blood line that keeps it flowing! That is my opinion...( and I think I speak for Anne H. as well..right Anne!! ( winking to Anne! )

I hear the desperate cry's of " Help Me" every time I receive a posting on this forum....so sad, so desperate, so real!

If you have a proven history of adhesion's from an invasive abdominal / pelvic surgery, you are an adhesion former! Doesn't mean you will suffer from them..not all adhesions are problematic...( causing pain and other disruptive symptoms, ) that is true, but if you have had an adhesiolysis, and have presented with pain that a cause can not be diagnosed...then there is a great probability that you are suffering from, " problematic adhesions. " How can you be sure? You can't, but neither can any one in the medical field either, unless you have a diagnostic laporoscopic surgery just to look and see...NOT to lyse any adhesions found as then you WILL have more problems to wonder about if you couldn't figure it out from the first ones....so it will be up to YOU to get a handle on what ails you! Do that by securing your prior surgical reports and reading them for statements relating to adhesions and the cutting or taking down of them....and with each consecutive report, you probably had more organ attachment involvement from Denovo ( new ) or from reformed adhesions then the previous report...as that is how adhesions work! And the good news is that is doesn't take a rocket scientist to figure it out!! ( I was close to being a " rocket scientist " though as it did take me a while to figure out what each and every adhesiolysis surgery was doing to me...boy was I trusting. Please don't tell anyone that I was a nurse on top of it..talk about desperate!!!...I was!! )

The more surgery's the more adhesions the more attachments...until you CANNOT have anymore adhesiolysis surgeries because the adhesions are so thick that a scalpel cannot cut through them....what do you do then...can't go for an adhesiolysis, surgeon WILL NOT do it because now it really becomes dangerous. The threat of nicking that bowel is so real then that even he is scared to touch you and that is aside of the fact that he probably will not even get into the abdomen due to those thick, dense adhesion formation's from so many prior surgery's!

But your still in pain, so much pain, now what? Suffering pain and even more so from having had so many prior adhesiolysis because you wanted so desperately to find some relief from your pain and suffering, only to be adding insult to injury! Without thinking of the consequences, without a thought of your future, without challenging your surgeon with questions as to your future with ARD. ( Oh, I almost forgot...YOU might have to introduce your surgeon to that new medical term, that's... ARD Adhesion Related Disease, got it ??)

You ask your surgeon, " What will this particular surgery do to me, who and how will I be cared for me when I can't have more surgery's, what about the pain when it comes back, ( and it will, only worse, ) Ask him about, "bowel obstructions,." Can they happen, yes, but I have NOT heard of it happening real often. ( Constipation is different then an obstruction and in the event you DO have a diagnosed intestinal obstruction, and require surgery, then that is when you have an invasive surgery, as it is an emergency, not an elected adhisiolysis. If your going to have a surgery that will result in more adhesion formation, then let it be a surgery that is meant to save your life, not compound the problem with unnecessary surgeries! That adhesiolysis your electing to have will only add stress to an already congested abdomen by adding more adhesion involvement thus increasing your chances for a bowel obstruction anyway...so if you think that your reducing your chances of having a bowel obstruction by having an adhesiolysis...think again!! An intestinal blockage has it's own set of symptoms and is diagnosable for the most part..and it isn't just chronic fatiguing pain, you'll know when you have one. )

Make your Dr. appointment, make sure I will be available at that time, AND THEN have your surgeon call me with YOU present in his office and we will talk to him together..call collect if you want!! 715-735-5131 Wisconsin time zone )

Now, there are many different causes of abdominal/pelvic chronic pain...the difference is that the highest majority of those causes ARE diagnosable...and have some semblance of treatment..not always, but on the most part!

ARD symptoms appear to be very similar when described by an adhesion sufferer....constant knawing to sporadic sharp pains, burning or stinging pain, a " pulling " sensation, the feeling of needing to "stretch" that area ( s ) where you had a prior surgery or under a visible scar from same. Pain radiating down into the thigh, back ache, pain increase's when sitting, or riding in a car, and heaven forbid hitting a bump, or turning a corner!! OHHH, I just cringe thinking about it!! Pain increase's after excises, bending, lifting, turning on ones side while laying. We think we can beat the pain by ignoring it...but it always wins..and we give in and try to change positions. We come to realize that when we do exert some energy by going to that school play or theatre, or sit through a dinner party where we can't sit let alone eat...we know we have to plan on being " down" on the couch the next day or two just because we went out and tried to do something a normal person can do....and then we become an electrical appliance! YUP.... we find ourselves plugged into the wall through the use of the ever present, " heating pad! " Heck, I even had a heat pad that I could place in the microwave and it would last up to an hour if I had to travel somewhere!! Actually two...one for the abdomen and one for my back!

I think that almost everyone who suffer's ARD has gone through this routine. Not to mention Dr. to Dr., diagnostic test after diagnostic test...and even having heard the mention of adhesions or scar tissue, one may not fully understand the implications of just what that means...let alone how it will affect their lives. They know pain is a major dictator in this disease, that is for sure...then the bowels stop functioning properly, constipation then diarrhea, then the gastric reflux starts, then the nausea, fatigue...and finally pills, pills, pills, ...UNLESS they turn to a willing surgeon and elect to have an adhesiolysis!

Why is it so imperative to not only understand your disease but to accept that you do have it? Well, for one, it generally is a progressively disabling disease, gets worse as time goes on, little to no effective treatment, NO known cure at this time....and unless one makes themselves aware of what they ARE living with, like it or not, then you will NOT ever handle it! You can go on trying to find another cause for the pain, I did....for 10 years. You can continue test after test...and that is not all bad in the event something else does surface aside of the ARD,,,( never assume all your problems are due to just adhesions. ) so a diagnostic test is fine. But there usually comes a time when you realize that your pain and associated symptoms ARE the result of adhesions!!

Like it...NO! But not liking that you have ARD doesn't make it go away...neither does surgery..I don't care who or what a DR. tells you...an adhesiolysis on an adhesion former who presents with undiagnosed pain will NOT benefit from an adhesiolysis in the long run...and I don't care who tells you that!! Buy you some time..sure it will, but know just what your in for before you agree to it..that is all!! Just know what so many of us didn't know..that after 6, 7, 8 and 12..or even 22 surgery's for some....we are now , "stuck " between hell and high water....still in pain, still watching for an obstruction, seeking pain management, lots of pills, uncertain future, still desperate, still hoping and still searching, but we live with an added symptom.... " living with the thought that if we had NOT agreed to so many surgery's would we be in LESS pain now?"

But we didn't know what you know today, and we are here to try to tell you, warn you, educate you so that maybe, just maybe we will help one of you to not have to suffer worse then you are now...if you think your suffering now and you are, for sure, think about how you'll suffer when you get more and more and more surgery's....until!!!

....Never give up! If we made it this far, you can to! Just ask and we will reach out to you in an effort to help you feel as good as you can living with ARD, we'll offer support, education, friendship. Come to us, lean on us, if we could hold each one of you who is suffering and scared, we would, and we are in a sense... as through this society we can reach out TO comfort you......we are all banding together in an attempt to beat this anyway we can...and I do believe we will beat it someday! I really do!

Who is the " WE " I speak of you might ask? ....

" We" are those who have lived with ARD for years and years...it is " WE " who know for certain that we suffer ARD, " WE " who have been called hypochondriacs, accused of self inflicting pain syndrome, lived through self doubt when NO Dr. so much as mentioned that we just might have something real causing our symptoms, " WE " who ran from specialist to specialist, diagnostic test after diagnostic test..all negative for cause, " We " who have figured out how to live with ARD, how to incorporate it into our lives the best we can so that it is not so intrusive and disabling, " WE " who under went adhesiolysis after adhesiolysis...never being told what was actually happening to us...it is " WE " who now can help YOU because " WE " walked where you now walk...and hopefully we can stop you from walking where we walk now!! That's who " WE " are...just adhesion formers...just like YOU!

Do you have to listen to us, NO! Will you always like what you hear from us? NO! Will it be scary to hear what has happened to some of us who have what you have? YES! Can hearing what we have to say help you? YES! And if you think for one minute that we suffered any less, or any differently then you are and can't know what your going through...think again because your wrong! If it IS ARD that your suffering with, we know what that is for sure! We simply say it like it is and like it has been. That simple, and it IS simple enough to figure out that maybe we do know a little of we we say..and that by saying it from the cuff it just might help YOU benefit from what we share. Not to challenge others opinions, or be challenged by others, as what is shared is not to force an issue, just to provoke a thought...a thought that just might save you from worse suffering...just because we know what can happen...we've been there. This isn't something new, it just has a name now, a focus, attention, a society, Thank-GOD......your not the first to have ARD, to suffer, to be treated as you are, we have been there...and may our suffering not have been for nothing...let us help you,

And we will make it through this........as I believe in miracles...do you???

GOD SPEED BE WITH US!!!! Beverly

>----- Original Message -----
From: Helen Dynda <olddad66@runestone.net> To: Multiple recipients of list ADHESIONS <adhesions@talk.obgyn.net> Sent: Monday, November 29, 1999 3:01 PM Subject: Re: Barium enama and adhesion>>Thanks Bev for wise suggestions about surgery for adhesions!!!!

> Thank you, Beverly, for the very wise information you have given in your
> message (below) for anyone who is considering surgery for adhesions!!!
>
> Your suggestions offer more hope for success - for a person who is
> considering surgery for adhesions - than I gave in my November 17th
> message,"Should you have surgery for adhesions?"
>
> Statistics have shown that about 90% of surgical patients do not have
> problems with chronic pain as a result of adhesions - but then there are
> about 10% of surgical patients whose bodies, for some unknown reason,
> form adhesions that can cause a lot of chronic pain. So there can be
> success following an adhesiolysis (surgery for adhesions) - but surgeons
> cannot guarantee success.
>
> Christine made a very wise statement when she said that there are many
> people who do not have chronic pain problems caused by adhesions - but
> we never hear about them; because people, who do not have chronic pain
> problems, have no reason to participate in an adhesions forum.
>
> Whether you choose to accept Beverly's information or the information I
> gave in my message on November 17th, is a personal decision you alone
> will have to make; but, I am sure that Beverly will agree, make an
> informed decision!! Learn as much as you can about adhesions! !!
>
> - - - - - - - - -
>
> At Sun, 28 Nov 1999, Bernie and Beverly Doucette wrote:
> >
> >All who suffer ARD know that a surgery will in all probability not be a
long > >term answer for the relief of our pain and suffering, but the one thing
it > >WILL do for us is buy us a little more time! Time to be off lots of
> >medications, time to live and enjoy life, time to eat and sleep an little
> >better, time to smile...and to buy us time for a possible cure or
effective > >treatments!
> >
> >We do know that the Intergel study's are underway, we do know that there
are > >DR's out there who ARE working to improve their adhesiolysis techniques,
we > >do know that there is at the very least, recognition of our disease! And
to > >have adhesions finally recognized as the dominant cause of our pain is a
> >massive advancement in our disease...recognition! You wouldn't be having
> >surgery if a surgeon didn't recognize and respect that you are in fact
> >suffering real pain and symptoms...all associated with adhesions! Now
THAT > >alone is a breakthrough!
> >
> > All that has come about just within this last year, and in a great part
to > >the IAS bringing it into the focus of the medical society as well as
those > >suffering with it!
> >
> >If you or anyone elect to have a surgery, then have it. It will offer
you > >some time to live, as even without ARD, no one knows how long they have
to > >walk this great earth, so why NOT try it and give yourself the chance to
> >live as near a normal life as you can. And just what if it does work for
you > >and you are rendered pain free? All that could happen .....life is
taking > >chances, and for us, surgery is taking a chance.
> >
> >Now, that is all the positives of looking at an adhesiolysis.......but
here > >is the reality of having an elective adhesiolysis......
> >
> > I think that part of taking that chance though, is to have your T's
crossed > >and I's doted before you go into it. It is one thing to have that surgery
> >and have short term relief, but what happens when you are so full of
> >adhesions from surgery's that you cannot have more surgery's ( and yes,
that > >happens all the time ) and are suffering pain so bad that you cannot only
> >play with your child, have relations with your husband, but NO recourses
> >either?
> >
> >As long as you have discuss all aspects of what will happen to you and
your > >body following another surgery, including what happens if you present
with > >pain again shortly down the road following the surgery, or what happens
if > >your adhesion become so dense and you cannot have any more adhesiolysis
> >surgery's due to the adhesion build up from to many surgery's. Maybe you
> >should think about discussing all this with your primary DR. as to just
what > >steps he will take when you can no longer have adhesiolysis surgery's due
to > >massive dense adhesions and your presenting to him with massive pain!
Think > >about those things as this is part of living with ARD...
> >
> >If you have exhausted all pain medications as a way to relieve your
symptoms > >and you can accept what a surgery in all probability will bring to your
body > >in your future, then have your surgery. I wonder if you are really
getting > >effective medications as I lived with this for 14 years and it wasn't
until > >the last 4 years that I was actually able to handle the pain and get
through > >my days with the help of medications.
> >
> >Cyn, you really have to think about these things as it will be up to you
as > >to how your future will be....you already have ARD....think about
this...do > >you have time to learn about it and try to take control of it without a
> >surgery? Or will it be another surgery that in all probability will only
> >make you worse? Are you willing to take that chance....you've had
surgery's > >before, that is how you got the way you are now...what do you REALLY
think > >another surgery will do to an adhesion former? What would YOU advise me
to > >do as an adhesion former?
> >
> >Having another surgery will buy you time, I did it in April of this
> >year....I made my choice...but I checked out the surgeon, I asked how
many > >laporoscopic adhesiolysis surgery's he has done, I requested his
> >adhesiolysis procedure to see what made his different then my prior
> >adhesiolysis surgery's as I wanted the best chance a surgery could offer
me > >as to non reforming adhesion following the surgery. It took me four
months > >of study, contacting references and understanding adhesion formation
before > >I elected to go with it. I also met with my PCP as to what we will do in
the > >event the adhesions do reform. I wanted to make sure that we all knew
> >exactly where we stood if I presented with undiagnosable pain again!!
> >Respect and recognition as to my disease! You can find my story in the
June > >forum of the IAS....and mine was no ordinary adhesiolysis....if it
succeeds > >it may just open the door for many who suffer this disabling disease.
> >
> >I am not against someone suffering with ARD to have an adhesiolysis, not
at > >all, but I am against them going into it blind...no excuse for that at
all > >now days. So cover you tail, ask questions that relate to YOUR future
> >treatment sin the event this doesn't work...that is all it takes. To many
of > >those who suffer with ARD have had so many adhesiolysis surgery's that
they > >are now being told that they are all but hopeless in getting effective
> >treatment, ..and they live in their pain...wondering if that pain would
be > >less right now if the had NOT had that adhesiolysis surgery that offered
> >them that same short term pain relief....I wonder that all the time..and
if > >this one doesn't work...I know what I am in for..but I sure hope by that
> >time, help for us has been found!
> >
> >Good luck to you, be sure, be safe and even in the midst of your pain and
> >suffering...be smart!
> >
> >God speed be with you! Beverly

>> >----- Original Message -----
> >From: Cyn
> >To: Multiple recipients of list ADHESIONS
> >Sent: Sunday, November 28, 1999 10:16 AM
> >Subject: Barium enama and adhesion
> >
> >> Hi,
> >> I am having a Barium Enema tomorrow and doing all the prep things
today. > >> I know what they are looking for and I am almost sure they will find a
> >> blockage of some sort. I go back to the GI(he is the one that order
the > >> Barium) Tuesday and then to see the Surgeon on Thursday. I know and my
> >> GI knows that I have adhesion that are causing problems with my
> >> Intestines, constipation and dia. I am hoping that the surgeon will
> >> order the surgery for the following week and that it is NOT just day
> >> surgery. My last surgery was Aug. and it was almost 5 hours long due
> >> to all of the adhesion. It took the Dr almost an hour just to get to
my > >> left ovary. I read the report and on the report it says, Massive
> >> adhesions everywhere. I know that more surgery can and probably will
> >> cause my adhesion, but I can not continue in the pain I am in. My
> >> husband and I have not been able to make love in over 3 months due to
> >> pain, I can not love on my 3 year old like I use to be able to because
> >> of the pain. Since November of 98 I have had 3 surgeries.
> >> Nov. Ovarian suspention/uterus ablation/endo
> >>
> >> Mar. Vaginal Hyst with right ovary removed(suspention did not work)
> >>
> >> Aug. Recto./cysto/left ovary removed/hernia/excesse
> >> tissue/adhesions(covered)...this surgery was done by a large incision.
> >>
> >> So now I am looking at more surgery to "fix" all of the others. But I
> >> really need it because I can not continue this way. I am like alot of
> >> you, thoughts of "ending it", running away, why bother...I have been
> >> through all of them. But I can't let them get me down anymore. So
> >> please feel free to Email me to let me know what I am going through is
> >> not all in my mind, sometimes I feel like I am losing it. Thank you in
> >> advance for your help. Cyn
> >>
>
> --
> The 15th century proverb which summarizes the purpose of medicine is:
> * To cure sometimes, to relieve often, to comfort always. *
>


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