International Adhesions Society





Chat About Adhesions

The following chat transcript courtesy of now


Prior Chat Transcripts


Prevention of Post-Surgical Adhesions
David Wiseman, PhD
Wednesday, April 12, 2000

Drwiseman "Hi - a little early for a change."

A_parker "I have had about 8 surgeries since 1987."

Drwiseman "Well, what can I help you with?"

A_parker "I was wondering, are adhesions genetic? My sister seems to have them also."

Drwiseman "We don't know whether they are genetic or not - I hope, through the IAS, to do a study that will find out of this is so. If you haven't signed up for the IAS, please do so."

Tpnut "I had my surgery a month ago. They found lots of them, what do they mean?"

Tpnut "And the pain is back."

A_parker "I have signed up. I will look forward to the study."

Drwiseman "What else? Have I spoken to any of you before?"

Tpnut "I am new."

A_parker "I was here a few months ago."

A_parker "And we chatted."

Booge "I'm so glad that Dr. Wiseman understands adhesions. Some doctors tell you to live with the pain."

Shirlmae "Hello--new to this chat room--just going in for surgery for adhesions, again, and wondering about test data on toxic shock from Interceed or Seprafilm."

A_parker "The key word being "again"... that is what makes me crazy... so many surgeries.. so little relief."

Tpnut "I feel your pain."

A_parker "I haven't heard about toxic shock from Interceed."

A_parker "Have you read something about that?"

Tpnut "I want to understand everything that is happening to me. Have some kind of understanding."

Shirlmae "My surgeon had two bad experiences with toxic shock from Seprafilm in one week, even though the adhesiolysis was relatively simple, and as a result he will not use it any more."

A_parker "Gosh Tpnut, that is all our dreams to understand why these adhesions keep coming back."

Booge "Yes, I would like to know about toxic shock from Interceed."

A_parker "I wish I could answer that for you."

Shirlmae "One explanation that I read about was that the body rejects the foreign material, even though there is no infection."

A_parker "I have had Interceed before...I didn't have a problem with it.. it just didn't help me."

A_parker "From forming more adhesions."

Shirlmae "Yes, I read a transcript lately where some docs, including Dr Wiseman, were appearing at a FDA panel regarding gel. I believe the consensus of the panel was to turn that down also; sort of discouraging."

Booge "I have had 6 surgeries, the last one in September, and they used Interceed."

A_parker "And if there is any side effects from it, as in toxic shock."

Drwiseman "Interceed - toxic shock - I don't believe that there are any data on this. A few people have claimed they have fever associated with the Interceed but the incidence is so low it is hard to associate it with the Interceed."

A_parker "My only experience with it was it didn't work. I still got adhesions back."

Shirlmae "I am curious; I called NIH and asked whether they sponsored medical research on various protocols for adhesion treatment and the answer was "no". Now, why not?"

Tpnut "How fast can they come back?"

Drwiseman "The safety record for Interceed is remarkably good - of course it should not be use in cases where there is a known infection or contamination."

A_parker "Well, for myself they come back in less than a year."

Booge "Mine too."

A_parker "Right now it has been 2 years since my last surgery... and I am just living with it."

Tpnut "That's what happen to me. Can they come back thicker?"

Shirlmae "Has any one had experience with use of anti-inflammatory treatment, or use of aspirin, after surgery as a minimizer for reformation of adhesions?"

Drwiseman "I don't know why not - most of the clinical research is being done by companies. I hope to be able to apply for a grant to study the members of the IAS because this is perhaps the most interesting population that will give us useful data about how to deal with adhesions."

A_parker "I have discovered eating a big meal aggravates it... so I just eat little meals."

Shirlmae "If you apply for a grant, could the users of this chat room somehow endorse your study?"

Drwiseman "Another Q: how quickly do they come back? They can come back VERY quickly - within a few weeks (actually they form right away) but you might not know about it until 2 weeks or so."

Drwiseman "How do you mean endorse? The IAS people will probably be the subjects. Of course you can also sponsor our work financially - which is our biggest challenge right now."

Tpnut "I had my laparoscopy March 10th. I am still in pain, can that be part of the problem?"

A_parker "There was one school of thought to do a surgery and then 4 weeks later go back in and cut down the adhesions that had formed and that might help, but sounds like a vicious circle to me."

Shirlmae "What I meant by endorsement is to convince the money crowd that there is a large population of sufferers out there who need help, and thus there should be a payoff in this sort of research."

Drwiseman "Anti-inflammatories - some work was done with single doses of ibuprofen and tolmetin and they did not find much benefit. My feeling is based on animal studies that these things may work if given chronically and starting before surgery - this will also apply to steroids - although there is some evidence in humans that if steroids are given beforehand then adhesions will be reduced."

Drwiseman "The early second look story has some good points - the main thing is that very early (less than 2 week) the adhesions are likely to be easier to cut."

Booge "But don't steroids make you gain weight?"

A_parker "But I wonder if insurance companies will pay for two surgeries in that length of time."

A_parker "I have to fight now for just one surgery for the pain."

Drwiseman "They can come back thicker. Some people have reported only temporary relief from pain and then it recurs - sometimes 2 weeks later sometimes 2 years later. Of course the earlier may mean that adhesions were not entirely the cause of the problem."

Tpnut "That makes sense."

A_parker "After my sisters hyst, she was in the ER screaming her head off in pain just 6 weeks after. They opened her up and lo and behold... tons of adhesions!"

A_parker "Yes, I read a transcript lately where some docs, including Dr Wiseman, were appearing at a FDA panel regarding gel; I believe the consensus of the panel was to turn that down also - sort of discouraging."

Anette1 "Dr Wiseman, I have the curse, adhesions, fibromyalgia, and chronic pelvic pain."

Tpnut "I have a doctors appointment tomorrow. What types of questions should I ask about adhesions?"

A_parker "That is sad Annette.. we know how you feel."

A_parker "I guess the first question I would ask the doctor is "do you believe in adhesions and the pain they can cause?""

Drwiseman "The FDA panel - actually there were two different FDA meetings - one was on INTERGEL. I was not part of that panel but attended the meeting as an observer. The panel recommended that INTERGEL not be approved. Pretty sad since the company has some good data but made some huge mistakes about how it was presented. There was another meeting that I attended and spoke at, which discussed adhesion barriers in general."

Anette1 "Today I talked to chronic pelvic pain clinic in Alabama. They have good things to say about Dr Wiseman."

A_parker "Because there are many out there that don't put much faith in adhesions and the pain it causes."

Drwiseman "Do I believe that adhesions cause pain? Some do. Not all adhesions cause pain and not all pain is caused by adhesions."

Anette1 "I believe that the pain from my adhesions caused the fibromyalgia."

A_parker "My adhesions are always in the same place in my body. Does that mean anything? Always on the right side.. never on the left."

Shirlmae "I read both of the transcripts of those two meetings and they were quite interesting. I did not know how the FDA went about making decisions; it seemed to be by consensus."

Drwiseman "fibromyalgia - I'm not sure that adhesions cause fibromyalgia. They may evoke symptoms similar to fibromyalgia."

Tpnut "What about endo?"

Drwiseman "Adhesions in same place - is this where you are having surgery?"

Tpnut "Yes."

Anette1 "The chronic pain can cause other muscles to react."

Tpnut "They found lots of it."

A_parker "Well it is pelvic surgery.. laparoscopes.. and the mass of adhesions were always on the right side, sticking to bowel and making a big mass."

Anette1 "I started out with endometriosis, then adhesions, then fibromyalgia."

Drwiseman "FDA consensus - remember this is an expert panel which votes - their decision is not final on FDA - certainly in the Intergel meeting the conclusion were by vote. In the other meeting it was to discuss a Guidance document and so there the method used was consensus."

Tpnut "Same here."

Anette1 "Now doctors won't operate until another bowel obstruction."

Drwiseman "The adhesions are in the same place because they are merely reforming. Thankfully for you there is no reason for them to form in other places."

A_parker "Also started with endometriosis...seems to be a common thread there."

Tpnut "They found some in my rib cage too, some type of infection long time ago."

Drwiseman "Infection will do it also."

Drwiseman "Many doctors will not operate until an obstruction."

Shirlmae "I have a friend at a laboratory in Germany that is working on non-invasive techniques; they have not focused on adhesions yet, but is it not obvious that we are all in a catch-22 situation until someone perfects non-invasive treatment?"

Drwiseman "There are no good non-invasive methods."

Booge "Dr. have you heard of anyone that has gotten disability for adhesions?"

Anette1 "Also had a barrier and had pain return in 3 weeks."

Drwiseman "Yes - you should contact me afterwards and I will refer you to someone who is working on that - it is a sticky situation."

A_parker "So what is there to do? I know my family gets tired of me "complaining", so when I talk about it, even here, I feel like I am just whining, and I should just grin and bear it so to speak."

Shirlmae "In terms of operate or not, my surgeon was of the view that a bowel obstruction every couple of years did not merit further lysis. Only until I had two episodes in 8 months did he agree to cut."

Anette1 "A_parker, I feel the same way, on a dead-end street."

Booge "OK thanks."

Tpnut "I feel the same way."

Anette1 "I've been turned down too for disability."

Drwiseman "Endo is a common reason why people have adhesions."

Booge "Why Anette?"

Tpnut "We are her for you."

Drwiseman "These feelings are very typical. You don't want to burden your family - they may think you are making it up and the doctors won't operate - even if they do, there is a good chance they will come back."

Anette1 "Say that I can still do work, I can't hardly keep up with the house."

Drwiseman "The important thing to know is that you are not alone - as you can see by the good chat we have here tonight."

Tpnut "Sometime you feel up against a wall."

Anette1 "That's for sure, Tpnut."

Booge "And the feeling of depression."

Anette1 "Definitely a feeling of loss."

Tpnut "Well, even you get tried of repeating yourself and you want things to get better, so you tend to shut down."

Shirlmae "What is the latest scoop on Dextran--are surgeons still using it after surgery, and does it help?"

A_parker "it is frustrating................... for sure."

Anette1 "What is Dextran, Shirlmae?"

Drwiseman "Dextran - very few people use it - it has limited value and there were some side effects."

Shirlmae "Beats me, my doc mentioned it in his report, not sure. Sounds like a sugar additive. I did not ask."

Tpnut "ls it like lupron?"

Anette1 "Dr Wiseman, so is the answer to all of this, just wait until obstruction occurs?"

Drwiseman "It is a product called Hyskon. It is a type of sugar complex which is poured into the belly at the end of surgery."

Shirlmae "Talk about desperation. When the gastroenterologist was trying to explain what's happening I asked why standing on my head would not dislodge the sticking or adhering. Really never got an answer, and never tried it. Like I said, desperate."

Anette1 "Shirlmae, hubby suggested same thing."

Drwiseman "No, there are some doctors who will operate for pain. I would ask your doctor to consider putting you on steroids beforehand, using a humidified and warmed gas supply for laparoscopy, and use an adhesion barrier (of course I am not an MD and your doctor must decide if this is going to be good for you)."

A_parker "I couldn't stand on my head if I had too.. :)"

Drwiseman "Of course you should check out some "alternative" things. Some people have tried massage therapy and MSM (something form the health food store) but there are no definitive studies on this."

Anette1 "Am in search of a doctor now. Mine threw up his hands and gave up."

Tpnut "What?????"

A_parker "Well that is something new to me..."humidified and warmed gas supply for laparoscopy"."

Tpnut "Where do you live, Anette?"

Anette1 "In Wisconsin."

A_parker "I had a doctor get mad at me because he put the trocar in my bladder. It was so pulled out of whack - said he would NEVER operate on me again for adhesions."

Drwiseman "Gas - usually the gas that is pumped in is at room temp and not body temp - it is a bit like the wind chill effect."

Carey "Dr, when would you have surgery if in the same position? When you developed an obstruction or for pain? How much pain is enough to warrant surgery?"

Tpnut "Oh my God!!"

Shirlmae "What are the possible side effects from Dextran?"

A_parker "Well, I will remember that Dr Wiseman. That is a wonderful suggestion about the gas."

Drwiseman "If it were me, I would want to have the pain removed as quickly as possible - even relief for a few months might be OK, but the flip side is the danger of increasing adhesions. But again, if it were me, I would try it at least once throwing everything I had at them."

Drwiseman "Warm gas, steroids, adhesion barriers, laparoscopy, etc."

Anette1 "I have had 2 surgeries just for adhesions, my belly looks like war zone."

Drwiseman "Plus a good surgeon."

Tpnut "I must live in denial, I can't believe Drs. would do that."

A_parker "I have told many a doctor that I understand that it probably won't cure it, but the pain relief even for just a while is worth another surgery."

Drwiseman "I cannot begin to imagine the pain that some of you are in."

Tpnut "Trust me! It's bad!"

Carey "How do you find a doctor who is good at adhesions? I tried our local referral. They didn't know specifics about doctors."

Tpnut "We feel like no one is listening."

A_parker "Oh it was really kinda funny, his face was all red, he was mad. I told him I had bad adhesions, I just don't think he believed me. And then when he messed up, somehow it was my fault. Needless to say, I haven't been back to him."

Drwiseman "Email me with your town - I may be able to suggest someone."

Booge "I can tell mine are back because pain in side and my left leg goes to sleep."

Tpnut "I have had that happen to me."

Tpnut "I can't sleep."

Carey "Thank you Dr."

Anette1 "I get the worst ripping pain and stabbers ever and a terrible backache."

A_parker "Dr. Wiseman, for me it is like that cramp you get in your side when you run too hard and it doubles you over. That is what it feels like to me."

Drwiseman "Let me be clear - even the most skilled surgeons will have adhesions come back - the trick is to get someone who will work with you."

Drwiseman "No one is listening - that is why we are here."

Tpnut "Dr. I live in Austin, Tx."

Anette1 "Even the Mayo Clinic is at a loss."

Tpnut "Do you know of anyone here?"

A_parker "But the pain is mostly all the time."

Drwiseman "AuUstin - email me later - I will respond tomorrow."

Tpnut "A-parker, poor thing."

A_parker "Thanks. I do appreciate the sympathy and the empathy you all have."

Anette1 "Is it ok if I email you too, Dr Wiseman?"

Carey "I had a c-section 14 yrs ago. Not many symptoms until 1&1/2 yrs. Hope if I have surgery the adhesions would stay away at least another 14!"

A_parker "Wouldn't that be wonderful Carey.. :)"

Anette1 "Been 2 years since my last surgery."

Anette1 "Have had pain and symptoms from 3 weeks after."

Tpnut "Dr, why do they not have more groups like this all the time? It seems that so much has to be said and learned."

Carey "I was willing to go through surgery until I found you, my stuck together buddies! Now I am scared! C-section and 1 lap is all I have had!"

A_parker "When I find a doctor that is resisting, I just tell him "hey if you take me as a patient, you can count on a new car every few years, just from me and my annual surgeries"... :)"

Anette1 "That's funny, A_parker."

Booge "lol"

A_parker "Oh Carey, it is different for all of us. Maybe you will do great. We want that for you."

A_parker "Well I figure you have to make them laugh, if you can. Better to laugh than to cry... all the time."

Tpnut "LOL"

Drwiseman "Why no more groups? Well this is THE place to come - but we need YOUR involvement to make this work. We are setting up chapters around the country to bring people together with this problem. We also need financial support to make this thing work for everyone - education programs and awareness initiatives to get doctors used to speaking about adhesions and dealing with them."

Drwiseman "Well the hour has whizzed by - has anyone any last questions before we sign off?"

Tpnut "Well how do we start?"

A_parker "No. But thanks all for listening tonight."

Booge "In the email it said that you're going to hire someone?"

Anette1 "We all appreciate the things you are doing Dr, thank you!!!"

Tpnut "Yes thank you."

Drwiseman "Hire someone - yes, but we need funds to do this."

Drwiseman "How do we start - email me tomorrow and let me know what you can do."

Carey "Thanks!"

Drwiseman "If there are no other questions - this has been a good chat. I'm glad you got something out of it."

Drwiseman "Signing off......."


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