Re: -Cindy-Fwd: ADHESIONS =>Bev's answers to 9 questions about adhesions

From: Heike F. (
Mon Aug 20 09:57:37 2001

At Sun, 19 Aug 2001, SCOTT LARSON wrote: >great information. I am so glad i found this site. though i don't post very often, i read most all of the messages on the board. i almost feel i don't belong because there are so many of you out there that suffer much worse than i do. i have pain, but it is not as bad as it was before my surgery in april to have adhesions removed. i feel so bad when i read about all the suffering going on. i guess my worst problem is not being able to use the bathroom. once a week is just not getting it, many time only with the help of a laxative. I know my adhesions are back because the pain (although not as severe) is the same. the question is will it get worse? i am afraid that it might, but then again who knows. I don't even know if I could live my whole life with the pain i have right now (i am only 33 years old). I don't want to have to take pain medication all the time. will there be a point where i say....THAT'S ENOUGH, NO MORE PAIN......then what do i do?

>that was very informative, thanks, i really needed to hear some of that have suffered for years and just recently have had a constant case of h ccoughs, heart burn, constipation and more persistant pain. can you tell me where the 3 doctors that were great are located? i live in southern a. thanks, karen

>>>----- Original Message -----
>From: Bev's answers to 9 questions about adhesions">
>Sent: Sunday, August 19, 2001 5:18 PM
>To: Multiple recipients of list ADHESIONS
>Subject: Re: -Cindy-Fwd: ADHESIONS =>Bev's answers to 9 questions abou adhesions
>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 adhesio s">Bev's answers to 9 questions about adhesions">> wrote:
>>> Date: Fri, 13 Jul 2001 16:41:58 -0500
>>> Reply-to: Bev's answers to 9 questions about adhesions">a Bev's answers to 9 questions about adhesions">
>>> From: "Helen Dynda" <Bev's answers to 9 questions about a hesions">Bev's answers to 9 questions about adhesions">>
>>> To: Multiple recipients of list ADHESIONS
>>> <Bev's answers to 9 questions about adhesions">adhesions@>
>>> 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 will know!

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