Tracy wrote:
> I have now had 5 laparotomies due to gross pelvic adhesions, the last
> being 12 months ago.Since January I have been living on pethidine for
> the pain but my surgeon will not operate because he believes my pain is
> not due to bowel adhesions as it did not show in the X-ray or scan.
> Please advise me as to what to do because I feel I cannot cope with the
> pain no longer.
> t Sun, 5 Aug 2001, marianne bolding wrote:
> >
> >--- Helen Dynda <Bev's answers to 9 questions about adhesions">olddad66@runestone.net> wrote:
> >> Date: Fri, 13 Jul 2001 16:41:58 -0500
> >> Reply-to: Bev's answers to 9 questions about adhesions">adhesions@adhesions.org
> >> From: "Helen Dynda" <Bev's answers to 9 questions about adhesions">olddad66@runestone.net>
> >> To: Multiple recipients of list ADHESIONS
> >> <Bev's answers to 9 questions about adhesions">adhesions@mail.medispecialty.com>
> >> Subject: ADHESIONS =>Bev's answers to 9 questions
> >> about adhesions
> >>
> >> Bev's answers to 8 questions about adhesions:
> >>
> >> 1.) Once adhesions have formed, how rapidly do they
> >> grow or spread?
> >>
> >> Bev: Adhesions form within 2 to 7 days post
> >> operatively. The very thin filmy adhesions do not
> >> create any problems for months to years; and they
> >> are soft and pliable. Your organs, though attached
> >> abnormally, can move quite well and freely thus no
> >> tugging. Over time -- and it's different for each
> >> adhesion patient -- the adhesions start to get firm,
> >> like external scar tissue does; and when that
> >> starts to happen, the organs that are tethered
> >> together will begin to lose their freedom, thus the
> >> pulling and tugging starts and the ARD sufferer will
> >> experience pain and other symptoms. The symptoms
> >> are very dependent on which organs are attached and
> >> how tough the adhesions have become. Some adhesions
> >> form very quickly and are thick, vascular adhesions;
> >> thus one experiences pain and pulling within a
> >> couple of days post operatively! Once adhesions are
> >> formed within that time frame, they DO NOT continue
> >> to form and they do NOT spread. They get tighter;
> >> and the tissue toughens thus creating either pulling
> >> of the organs or constricting of the bowel -- like
> >> placing a loose rubber band around a balloon and
> >> gradually wrapping it around more and more, thus
> >> causing a constriction.
> >>
> >> 2.) Is there a point where the growth stops?
> >>
> >> Bev: Adhesion formation ONLY takes place in the
> >> time span of two to seven days. That is due to the
> >> healing process of the internal wounds. After seven
> >> days NO adhesions form as a result of the invasive
> >> process of surgery or injury. An inflammed appendix
> >> though can create inflammation internally; and the
> >> longer it is undetected, the more adhesion growth
> >> there is in response to a pending burst within the
> >> body. The body is encapulating that injury site
> >> with adhesions so if it does burst, the peritonitis
> >> is less -- though it is still usually fatal.
> >>
> >> Adhesion tissue does not continue to grow. Your
> >> pain and symptoms increase due to the toughening of
> >> the tissue and thus tighter tethering of what should
> >> be freely moving organs -- and, of course, along
> >> with that comes pain!
> >>
> >> 3.) How can the extent of their growth or spread be
> >> determined?
> >>
> >> Bev: As to the extent of the attachments and organ
> >> involvement from adhesions, only a laparoscopic
> >> diagnostic test will show that. There is no
> >> diagnostic test known in medical science today that
> >> will or can diagnose adhesions. NONE! No matter
> >> who tells you otherwise, there is none!
> >>
> >> 4.) Should I be concerned that they may be attached
> >> to other organs?
> >>
> >> Bev: Well, I don't know that. They ARE attached to
> >> other organs as that is what tethers them from
> >> moving freely. As to whether you should be
> >> concerned about that depends on your symptoms. If
> >> you have no symptoms that bother you, don't worry
> >> about them; BUT, if your'e suffering from symptoms
> >> of pain, constipation, heart burn, vomiting,
> >> etc...then yes, you should have a great concern as
> >> it will not get better. It only gets worse over
> >> time.
> >>
> >> 5.) Could they be the cause of abdominal distension
> >> (when no gas is present and BM's are regular)
> >> because of the extra tissue that has formed?
> >>
> >> Bev: Abdominal distention is a symptom of ARD; and
> >> it is not due to extra tissue. It is due to the
> >> bowel not being able to function properly as it is
> >> probably being pulled out of normal alignment as
> >> well as constricted in areas. This all depends on
> >> what surgeries you have had and what organs may be
> >> involved. This CAN be pretty well determined by
> >> looking at your operative reports. They tell a very
> >> informative story as to what adhesion involvement
> >> you have.
> >>
> >> 6.( I had a CT scan in December and a spot on the
> >> liver was detected. I go for another on Friday to
> >> determine if it has increased.
> >>
> >> Bev: The spot is NOT adhesions.
> >>
> >> 7.) Could this be an indication that there are
> >> adhesions attached?
> >>
> >> Bev: NO, it cannot be; and it isn't adhesion
> >> tissue at all there.
> >>
> >> 8.) What is the prognosis for people with abdominal
> >> adhesions or is there one?
> >>
> >> Bev: There is one. The best case scenario for a
> >> good prognosis for an ARD sufferer is to secure the
> >> most qualified adhesiolysis surgeon there is. To
> >> date there are three of them in the world. The
> >> difference in frosting a very eye catching wedding
> >> cake is in the skill of the cake decorator -- as it
> >> is for a high quality adhesiolysis performed by a
> >> skilled and very precise surgeon. One will never
> >> really know what their personal outcome will be
> >> following an adhesiolysis; but it sure is one's
> >> best chance of getting as well as they can get if
> >> they go to the best.
> >> If you don't, your chances of getting any BETTER
> >> then when you went in for an adhesiolysis with an
> >> unskilled surgeon are very poor -- let alone
> >> thinking of getting well from ARD! It won't happen.
> >> It hasn't yet!
> >>
> >> 9.) Are there suggestions for living with and
> >> successfully managing adhesions?
> >>
> >> Bev: That depends on the symptoms. I have about 5%
> >> pain at times. It is either adhesions or residual
> >> damage from prior surgeries, which would be normal.
> >> If one can live with a certain level of pain -- such
> >> as people do who have back problems, arthritis, lots
> >> of things that
> >> cause chronic pain -- one may be able to live with
> >> ARD and manage it with medication. BUT...taken over
> >> a long period of time, medication itself will start
> >> to distruct your organs -- liver and kidney
> >> toxicity, esophageal eschoriation (GERD)...ncrease
> >> in dosages if the pain increases. intolerance of
> >> medication over time...lots of things happen when
> >> people are on long term medications. This question
> >> is based on how YOU think you can live with it. If
> >> you can eat and perform tasks, sit in a car, sit for
> >> over ten minutes in a chair, walk, bend, have bowel
> >> movements, not vomiting all the time...maybe you can
> >> live with it. I would guess some do. I only hear
> >> from those who suffer terribly; and many are so ill
> >> they might succumb to ARD...I don't think people,
> >> who can live with it, actually look for help so we
> >> at the IAS wouldn't hear of them.
> >>
> >> I tell people with ARD, like myself, one day at a
> >> time and you will be able to know when you need
> >> something done for your adhesions...you will know!
> >>
>