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">email@example.com> wrote: >> Date: Fri, 13 Jul 2001 16:41:58 -0500 >> Reply-to: Bev's answers to 9 questions about adhesions">firstname.lastname@example.org >> From: "Helen Dynda" <Bev's answers to 9 questions about adhesions">email@example.com> >> To: Multiple recipients of list ADHESIONS >> <Bev's answers to 9 questions about adhesions">firstname.lastname@example.org> >> 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! >>