I've read a few posts here on adhesions and am just curious. I don't know much about them or what causes them. They certainly seem to be one of the more difficult things to treat. Seems like the ones I read all were abdominal adhesions; can you get adhesions in other places?
HI Mary! Adhesions and scar tissue and basically the same. And yes, you can get them anywhere there has been surgery or injury. There is no cure and you are correct, they are a bugger bear to treat. If you have surgery to remove them, you just get more in their place.
Why some people get them and others do not is a mystery. I started a thread on the abdominal adhesions site asking for similarities in adhesion patient's medical history. No one seemed interested. However I posted this same question on an Adhesion support website and got quite a few. Allergies, especially latex, medications, nickel and several others seem to a common theme among us. If only some smart young researcher would figure this out!
My advice to anyone: If you can avoid surgery, especially abdominal surgery, do it. If you have any of the above allergies, you could be next..
Interesting. I didn't know they were the same as scar tissue. Now I'm wondering if that's part of the problem with my hand. Quite a while ago the surgeon mentioned scar tissue as I was having "crackling" noise when I moved my thumb. He said it was scar tissue and it should break up. It never went away and the pain has always been there. I'll have to mention it to the pain clinic. I know I have nerve pain but even when I get good pain relief there's always a certain area that nothing ever touches.
Sounds likely to me. Some unfortunates even get adhesions in the chest area, threatening the heart. Surgeons want to deny them. Of course they do. Their work caused the adhesions. I was never warned about adhesions prior to my surgeries. I found out about them only after I got them.
Lortab is generic hydrocodone. I don't know why the Lortab is working better than the Norco did but it is. And yes, the Klonopin is anxiety and has some pain relieving qualites to it,
I don't blame you for wanting to cry. This gets so discouranging. You think something will work and hope for it so much. Only to be disappointed. But don't give up. Your patch level probably just needs a little titrating. Good luck sweetie! And call your doctor in the morning!!!
My first experience with adhesions followed knee surgery. I was slowly getting better and one day... KAPOW! You could hear the "pop" across the room and my knee swelled up to the size of a canonball. The doc shrugged it off and said I'd torn an adhesion. Nothing to worry about. It's happened a few other times over the years but never again that spectacularly.
I've also got abdominal adhesions. Any kind of inflammation whether from injury like surgery or infection (appendicitis being a big one), or other irritants like endometriosis or even the fluid from a ruptured ovarian cyst causes scar tissue to form. Radiation for cancer is another big cause of adhesion formation. Any woman who has had breast augmentation surgery has to have someone knead the breasts to keep adhesions from leaving them like cereal bowls stuck to her chest. If that happens, the doc literally busts the scar tissue up with his hands. Can you imagine the pain? It's true. This happened to a friend of mine after her husband convinced her she just HAD to go larger. I'll live with my B-cup, thank you!
Scar tissue is a result of the normal process of the body trying to heal itself, but in some people the process goes haywire. They cause a lot of trouble if they form on loops of bowel causing obstruction. That's what I've lived with for well over 10 years. If obstruction doesn't resolve on its own (which does happen with total GI rest) then surgery is a must. The surgeon must be very careful to disturb as little tissue as possible when he cuts the scar tissue to release the structures that are glued together, so laparoscopy is the preferred method of adheliolysis. If a patient is allergic to latex in surgical gloves, you can expect more adhesions to form because the allergic reaction causes inflammation. I don't have allergies, but I grow adhesions like they're being fed Miracle Gro. Go figure.
There are cases in which abdominal adhesions eventually prove fatal. If so much scar tissue forms, it results in what is called a frozen abdomen. Loops of bowel can no longer move freely around; food and waste cannot pass through; nerves and blood vessels get cut off; vital organs cannot function properly without circulation and that's it. There is very little any doctor can do with a case of frozen abdomen other than offer comfort measures.
So what does a patient like me do when surgery is no longer an answer? Deal with the symptoms. I've got a great pain doc who I've been with for 5 years. It terrifies me to think of a time she might move on to bigger and better things. Same goes for my surgeon and gastro doc. All three know my history very well and they keep each other informed of any changes.
Since the worst adhesions are on my intestines and wrapped around the common bile duct (among other things) eating and maintaining decent nutrition are extremely difficult. I've been through several blenders and juicers over the years. LOL! Think of a water hose with a few kinks and you can imagine the pressure that builds in intestines with food having nowhere to go. Sometimes it just comes right back up again. Even liquids. When the obstruction gets really bad, I tough it out at home with pain and nausea meds and starvation for a few days until it resolves. That happens a couple times a month on average. I'm a very underweight 110 pounds at 5'9" and when these flares occur my abdomen looks like a 6 month pregnancy and gets hard as a rock. I'll do anything to avoid the hospital and I've got most of the same tools at home as they do at the hospital to deal with it. The only way I'd go is if I get dehydrated or it goes on for more than 5 days. Then it's NG tube time to releive the pressure - and I DESPISE an NG tube!
There hasn't been much research devoted to adhesions, and it's a crying shame because a whole lot of people develop them - particularly after surgery. Since they're soft tissue they generally don't show up on imaging studies making diagnosis very difficult. Many doctors don't even believe adhesions cause pain. HA! There was one study done a few years ago with using Celebrex before and after surgery to help prevent the inflammation that causes adhesions. The results were very promising. Unfortunately, the release of the study coincided with Celebrex and other cox-II inhibitors coming under fire with a handful of patient deaths and the market for these medications was nearly destroyed.
Another problem is that adhesions form very quickly after surgery, but it can take some time before they cause enough trouble for symptoms to appear. The tissue is very filmy and soft at first, and over time becomes thick, rope-like and hard. That process might take weeks or even years - far enough away from the original surgery that even doctors don't make the connection. The patient gets put through the mill with a gazillion tests, and when they all come out normal we're told it's IBS, take fiber and don't come back. Fiber is the last thing a person with bowel adhesions should take. It's just begging for a major obstruction.
Sorry about the book if anyone is still reading. I've had more than enough experience with adhesions myself, and wouldn't wish this problem on my worst enemy. If anyone wants to talk, you know where to reach me. :-)
LOL! No idea when the next installment will come out, but since I suffer from diarrhea of the keyboard it'll probably be sooner rather than later. :-)
How long have you had to deal with adhesions? Are you like me in that surgery is now more dangerous than not? I've lived on primarily liquids for so long I really don't miss "real" food anymore. I do get really tired of people who know my situation and can't resist remarking on how thin I am and encourage me to "go eat a steak or something!" Yeah right. I don't think they want to see the fireworks of that steak coming back up or worse, staying down and leaving me obstructed for days. Sheesh...
Wow, it is painful to read what you guys have to go through!!!
Jaybay, I think people are like that in all situations. When my ex was trying to get sober and doing well at it, people would actually say, "Well, why don't you just have one or two beers? You can do that." People should mind their own business unless they're asked for advice, IMO.
I started this wonderful journey in 1995. I've had so many surgeries at this point my stomach look like a road map! Laparoscopic surgery hasn't been an option since 1998. My last surgery was in 2003 for a blockage that wouldn't clear. None of the surgeries have been optional. After the last one, I was told that unless I was at death's door, no more! And my surgeon urged me not to allow another surgeon try to talk me into it. Those guys love to cut. And then leave us in a lifetime of pain.
I still eat sold food but I'm careful with what I eat. When I know I've got a block or a partial I go to liquid diet. I want to slap the doctors when they ask how I know I'm blocked!!!! I swear, my cats know more about adhesions than some doctors I know! You'd think that a professional would know better than to make a stupid comment like that. But they do it all the time. Remarks like: Adhesions don't cause pain or problems AND my all time favorite: You've got IBS. Really, my GI doctor says I don't and he's done 2 colonoscopies on me. But still the idiots babble on.
Sorry, got on a roll there.
Mary: You are absolutely right! Unless asked, these idiots shouldn't comment about things they know nothing of. A recovering alcoholic having a couple of beers??? Are you kidding me???
As always JayBay you have provided some great information.
Yes scar tissue and adhesions are the basically the same thing, just a bit different. Scar tissue often forms an adhesion. An adhesion is a bond between two things which were not previously joined. The most common location and often the most painful location for adhesions is the abdominal or pelvic cavity. The body does not have the ability to reproduce the tissue that has experienced major damage. Therefore it has to heal with a different type of tissue known as connective tissue. This tissue is not near as "good" as the tissue it has replaced.
Fortunately a Frozen Abdomen is rare. There are surgical options that can have some degree of success for varying periods of time. It's my understanding that it is not always fatal though it is always extremely painful. It's a very frightening condition for a person to have as a diagnosis.
There is a newer material being used in some facilities to combat adhesions called SEPRAFILM. It's used during surgery. Unfortunately it's success is limited.
An infection or an inflammation or even disease process can produce adhesions. Some ppl have them and never have a pain with them while others have just a few and have significant pain. As started earlier by another posted why some ppl develop adhesions and other don't is a mystery. Why do I have stretch marks that looks like a Chicago street map after two pregnancies and my best friend who had five births doesn't have a one? Go figure!!
I've also read that some studies or maybe thoughts seem to suggest that ppl that have more allergies to things like latex seem to develop more adhesions than those that do not develop adhesions. I imagine one day the medical profession will run out of things to study and adhesions will finally get their attention. One can only hope.
As I await to hear from a surgeon for a possible consult I can't help but wonder if my problems are as much related to the massive adhesions that I have as they may be related to the faulty huge mesh implant. It's a scary proposition either way.
JayBay you are also correct that adhesions do not show up on a CT, unless they have caused a bowel obstruction or something similar. Did you know that a mesh implant will also not show up on a CT? It makes you wonder just how many things don't reveal themselves with today's technical tools. Yet most physicians are quick to announce there is nothing wrong with you as soon as that CT returns with "normal findings."
However most adhesions can been seen on an ultrasound. Sometimes they only appear as a cloudy shape which can indicate that it is scar tissue.
In my opinion IBS can really mean, "I don't know but I have to give you a diagnosis." So it's a safe diagnosis. By no means do I mean to down play or minimize the significant pain and problems that IBS suffers experience. My friend has terrible problems with IBS. I just think too often it can be over used.
Oh-oh. his must be a good subject or a good day for a rant...Sorry I did it too! :)
Another problem with adhesions is that it seems like insurance companies do not want to pay for adhesiolysis. Sure, they will pay for surgeries that can cause them in the first place but not for any subsequent surgeries to correct them. I believe that most of them really do know otherwise. It can quickly turn a cordial conversation into a hostile one which tells me that they really do know what adhesions can do but aren't supposed to talk about them- otherwise, why the sudden change of demeanor? Adhesions are truly a hushed-up health topic. It is a joke when doctors say that abdominal/pelvic adhesions don't cause pain or problems when everybody knows what they can do elsewhere- like with a frozen shoulder.
I was referred to physical therapy for pelvic floor dysfunction. I went to two different physical therapists who quickly detected adhesions merely by examining my abdomen and pelvis (weird that doctors can't be trained to do the same) which was when I learned what all these tight, tugging and wrap-around sensations were after 20+ years of suffering and being thrown under the IBS bus were. Unfortunately, there was nothing the physical therapists could do though I certainly did my share of stretching exercises and kegels to no avail. Interestingly, even though it was a doctor who recommended physical therapy, none of them seem interested when I tell them what the physical therapists had to say regarding detecting adhesions. I also don't understand why, during a difficult colonoscopy, that adhesions aren't at least suspected. I think that using the argument that they don't show on imaging tests is just a convenient excuse not to consider them, period.
The most promising sounding treatment I've read about is called 2nd and even 3rd-look laparoscopy. New adhesions generally start to form within a week. So they go back in in a week or so and remove any new adhesions that have started to form. Supposedly, the newer adhesions are softer and easier to remove and therefore leave less damage behind than the first surgery so the chance of new, tougher adhesions is lowered. But this approach is not SOP and with insurance being the way it is they would never go for it.
I also think that progress regarding prevention of adhesions isn't going as fast as it should because this topic is so hush-hush. But if you do a search you come up with studies and clinical trials for adhesion prevention so it's pretty obvious that in the 'underground' medical community that they really do know adhesions cause pain/problems, regardless of what it is said to a patient's face during an appointment.
IMO, what this issue needs is publicity. Many of us who talk about adhesions on various forums have tried to get this topic covered on talk shows but none of us ever get any response. Some of us have also written our elected officials.
I had an left open adreaneloctomy 9 months ago. My surgery didnt went well so i end up in hospitalized more than 2 months. now i am suffering from cronic (chronic) pain on my left side of the surgery area including bulging up lke a baloon, Doctors told me they cant do anything about it. I am honestly so angry at the doctor who cut it open my stomch. I am getting very depressed and loosing confidence. .I am on too many meds but nothing helping me to controle the pain. if any good doctors read this one please help me. What i do to get better?
I was diagnosed in 2010 with Uterine Cancer, I was able to go on a chemo pill and it worked for me. I did not have to have a hysterectomy, thankfully, because my husband and I have not had children yet, which we really want. I've had 5 D&C's since 2010, the cancer has not come back, but they keep checking to make sure, but have noticed scar tissue, they removed what they could. My question is, I have been in pain 24/7 since Feb 2012. I have been to my gynecologist, regular doctor, physical therapist..and no relief. Pain pills don't help. Sometimes when it gets bad I have to curl up in a ball and want heat on me. It hurts straight across my pelvic area around to my back. My back has been checked and it good. My colon and everything else in that area has been checked also, it's all good. Any ideas? Ready to feel some relief.
During the early onset of adhesion issues can the pain come and go? I have just had an 18 hour ordeal at the hospital where I ended up with a diagnosis of IBS! The pain has been on and off for 10 days the shortest episode lasting only a couple of hours and the longest lasted about 18 hours. I described the pain like a thunder storm the lightening striking with severity but the storm is there all the time. In between episodes I am left with a feeling like I have been kicked in the stomach, my pain and subsequent tenderness are all localized round the appendix. I had adhesions cut during my last c-section nearly 4 years ago and there were only 2 years between those surgeries so I am wondering whether this might be likely as all my test, including the CT scan came back normal! It is very frustrating and painful!
Sorry I didn't see your question sooner. Pain relief for adhesions can be difficult because as we know even if we can get them prescribed for us, many pain meds have bad side effects and usually should not be taken indefinitely anyway- at least not the most effective ones which are generally opiods- vicodin, Percocet, etc.
I have been taking Tramadol which can take the 'edge' off of the pain. I also make sure I take magnesium which I guess is good for pain (not Magnesium Oxide though which can be too irritating to the colon although some people with extreme constipation swear by it).
Otherwise I sometimes go to a medically-oriented massage therapist for about $100.00 each time. It does help but only temporarily. I apparently am very tight throughout my abdomen and pelvis- from both tight muscles and adhesions based on what Physical Therapists have told me. Unfortunately, Physical Therapy seems to be all that Drs. will recommend and as we both know PT isn't always enough. If you have a decent bathtub (I don't) then I have heard that taking hot baths can sometimes help loosen things up a bit temporarily.
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