Re: A slippery slope to agony and eventually death

From: cathy:- (anonymous@medispecialty.com)
Thu Jan 30 08:43:48 2003


Hi, winged phantom, (I love your handle by the way!)

First of all, virtually all "open" abdominal surgery leaves some adhesions behind, and about half of all laporoscopies leave them as well. They start forming within 3 hours of the start of surgery. (In long procedures the surgeons will work across the belly, and 4 or 5 hours after they start they will go back to the areas that they started on and just cleared all of the adhesions out of, and they will see that they adhesions have re-formed.) Adhesions can form even with the most meticulous surgical technique, but there are some techniques which can raise your chances of ending the surgery adhesion-free from "none" to "slim."

Adhesions can also form from any sort of infection in the abdomen (appendicitis, PID, burst ovarian cyst), from the bleeding of endometrial implants, and even from a blow to the abdomen that is strong enough to cause internal bleeding. Adhesions are the body's natural reaction to blood and infection -- a good adhesion-former will survive a burst appendix, while mere mortals would have been dead before the invention of surgery.

As to whether the normal monthly ovulation (which involves an ovarian follicle ripening into a small cyst and then the egg bursts out) can cause adhesions, the answer is I don't know. When I first went to my internal medicine doctor complaining of pain in my side, I compared it in character and location to the intense mittelschmertz (ovulation pain) which I have had every month since I started ovulating after first child was born by c-section in 1994. (I had more mild mittelschmertz every month for a decade before that.) This internist, who to her credit does believe that adhesions cause pain, also told me that the treatment was to go in and cut them and that was that, and seemed completely surprised by the notion that a surgery to cut adhesions would cause more adhesions. My internist sent me to an OB/GYN and scheduled me for a pelvic ultrasound. The gyn listened to my symptoms and was mostly perplexed -- although she did think maybe it sounded like adhesions. I brought up what the internist had said about mittelschmertz and the process causing the ovulation pain also causing adhesions. She had that look on her face like "I don't want to call your other doctor an idiot in front of you..." So this was about the time I found this message board, and I asked here. A couple of people here suggested that I ask on the obgyn.net message board, and I did. That board is good for really simple questions that you can clearly state in a sentence or two, but not good at anything complex. The doc answering the question got in his head that I was asking about endometriosis, and his answer was that blood does not come out of the uterus into the abdomen during ovulation like it might during menstration. So I asked again, this time comparing ovulation and the fluid from the ovary to a rupturing cyst or PID. The answer I got back was, "Oh, I guess it might work that way."

Now adhesions are incredibly common, and it has been estimated that 30% of all Americans have them, and 40% of Americans over 40. This was from a study of autopsies, where they correlated the people who had adhesions to their medical histories. According to a big study of all people covered under National Health in Scotland that ran from 1985 to 1995, if a person has abdominal surgery, then there is a 1% chance that he/she will be readmitted to the hospital with a bowel obstruction in the first year, and a 1/2% chance each year for the next nine years. (The study lasted 10 years, and what was somewhat ominous is that your chance of a bowel obstruction the 10th year out was not any lower than the 2nd year. If you've had abdominal surgery you are never "out of the woods" as far as a bowel obstruction goes. My friend's dad had an obstruction last October that came from an appendectomy 32 years ago.)

Adhesions are considered by doctors to be primarily an annoyance to the surgeon. A typical scenario is a person who needs abdominal surgery, and when the doc cuts he finds that it looks like an explosion in a glue factory in there. This is dangerous for the patient in that you now have a doctor operating partially blind in there with sharp instruments. The adhesions block the surgeon's view, and they also pull organs into spots that they are not supposed to be in -- so a surgeon cuts somewhere that is supposed to be "safe" and finds that he has just perforated the patient's bowel. Or another scenario is a woman having her 3rd or 4th c-section, and the scar tissue is so dense that it takes an hour to hack down to get the baby out. If the baby is in distress this can mean a dead baby if it takes too long to get in there.

But in the vast majority of cases where adhesions cause the surgeon massive headaches, they have caused the patient no problems at all. If the patient hadn't NEEDED that surgery, then they would have been utterly harmless. That's the scenario in 90%-95% of all cases of people who "have" adhesions. Ok, so then we come to the other 5%-10%. Well in most of those cases, the only problem that adhesions cause are bowel obstructions. The typical scenario there is that a patient will have abdominal discomfort on and off for a couple of months. Then will progress to a full obstruction, which is accompanied by blinding unbearable pain, vomitting, and inability to pass either stool or gas. You go to the ER. A quick scan will show the blockage plain as day, they rush you into the OR, open you up, cut the adhesions that are causing the blockage, and close you back up. You might lose an inch or two of intestine to the whole incident, or maybe not. After a couple of days in the hospital and 1-3 months of healing time you are good as new.

I think that it is vitally important to understand what DOCTORS are thinking of when they say "adhesions." They are thinking of the 99% of people who have adhesions. The vast majority have no problems. The ones who do have problems have a bowel obstruction. It's immediately obvious what the problem is, and a quick relatively straightforward operation later everything is peachy-keen wonderful all better.

People who have ARD (Adhesion Related Disorder) are the tiny, rare minority of people who have adhesions. The pain of ARD is not caused by bowel obstructions except on those occasions that we have bowel obstructions. This pain is caused by pulling on the abdominal organs during normal movement. Just why this small minority of "lucky" people have pain from adhesions is not exactly clear. The most plausible theory is that the adhesions in people with ARD are shorter and/or more rigid than in normal people. That would also explain why some people can go years after the adhesion-causing event with no problems and then have problems appear. (My adhesion symptoms first showed up seven years after my c-section.) The adhesions seem to shorten and tighten gradually over time. Perhaps ARD sufferers have adhesions which start out abnormally short/tight so their pain appears 10 hours after surgery, while a "normal" person needs 150 years for the adhesions to get that tight, and will be long dead by then.

But back to trying to read your doctor's mind... If he/she has long experience with bowel obstructions being incredibly obvious, then he/she might not believe anything is wrong with you when all of the scans and tests come back normal. Maybe the doc is able to "think outside the box" far enough to say, "well those obvious tests are showing bowel obstructions, not adhesions, and so the adhesions themselves don't show up on tests, and maybe this patient has adhesions even though he/she doesn't have a bowel obstruction." But that still doesn't mean that the doc appreciates that those adhesions cause pain all on their own. If a doc starts with an obstructed patient in agony, does a surgery, and then within a few weeks the patient is totally cured, then it is very understandable that the doctor thinks that a simple operation will "cure" adhesions. And not appreciate that the pain that an ARD patient suffers from is comping from a totally different cause than the pain in a patient with an adhesion-caused obstruction.

And most importantly, a doctor who does not realize that the pain that an ARD patient feels comes directly from the actions of the adhesions on the organs and abdominal wall is a doctor who does not realize that the new adhesions that he/she causes by doing ANY surgery (including adhesion surgery) will make the pain of ARD worse. When a "typical" obstruction patient has surgery, the surgery "works" because the surgeon successfully trades new "good" adhesions for old "bad" adhesions that are causing the obstructions. The typical obstruction patient has more adhesions when his/her surgery is over, but that's ok because the patient has traded the obstruction-causing adhesions for some adhesions in different spots that don't cause any problems. But the contrast with the ARD patient is vital here. Since an ARD patient is experiencing pain caused DIRECTLY BY THE ADHESIONS, then the total number of adhesions is what is important. And so the surgery is fundamentally futile and counterproductive.

Ok, I've babbled long enough here...

At Wed, 29 Jan 2003, winged phantom wrote: >
>Hi Cathy,
>I have tried to figure out exactly what ARD is, but it is not something
>that is easily looked up, even on the web (and my powers to see, with or
>without my glasses is sometimes suspect :( ). So you say that the ARD
>sufferer is extremely rare, but exactly how do you get that diagnosis,
>as opposed to someone who "merely has adhesions"? And so how would I
>know that I have that, ARD, and that my surgery would make it worse?
>
>And are you telling me I should just pack up and go to Germany for the
>surgery?
>
>I really have tried to read a lot of posts here, but I have not been
>able to find the answers. Sorry.
>
>Thanks for your help,
>wr

--
cathy :-)

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