Thanks for the update on Lizzie. THis is very truly disheartening to say the least. I fear for her and am praying for her. For one thing, doing all those internal pouches and revisions on her was obviously not the thing to do. These internal pouches are at best still at the experimental stages at many institutions. But she was working with the information she had been given by doctors at one of America's top institutions and made the best choice she could with the info she had. And these docs were likely also very sincere.
Secondly, so many surgeons either do not have a clue about small bowel adhesions or they know and they don't bother telling the patient. Because it happened to me, I was knowledgeable of this soooooo long ago. As they did more and more surgeries on Lizzie, the more I began to fear this would overtake her. It it known as ARD (Adhesion Related Disorder) and is extremely prevalent, is a disease created by surgery, is not talked about by surgeons for that reason, and (scarily) may not be KNOWN about by many surgeons. In my search for help through almost losing my life to ARD, I had checked into going to Cleveland. I then contacted someone at the Adhesion Related Disorder website who said Mayo and Cleveland are not knowledgeable about ARD. THis certainly bore out with my experience at Mayo who ironically did find the cause of my issue, small bowel adhesions, but said they didn't deal with it and just wrote in my record to keep using my nutrition port which I never had! So I did have the heads up on this and I think posted about it at the time.
I feel awful about what Lizzie is going through. Her docs were likely very sincere, but I think this whole Adhesion Related Disorder (small bowel adhesion obstruction issue) should be brought to light by surgeons and talked about by patients AND doctors. Many patients who have not had these issues and have had many surgeries think or are told by their docs, you are not an adhesion former. Or you had some and they were not of harm.. This may be true at the time, but surgeries have a cumulative affect. The more surgery that is done, the more times, the more and denser adhesions will form that will cause small bowel obstruction and or pain. It is a substance called Fibrin and Collagen. Somehow, instead of the body breaking this down after the healing process begins, it densens and gives small bowel adhesions, then obstructions. Other organs can also become glued together with this substance.
I do remember asking if Cleveland was going to use Seprafilm as Lahey did with me. The response was that LIzzie's surgeon said Seprafilm can cause more harm than good. There are many beliefs among surgeons. They are just that, beliefs, they are not necessarily the truth. These beliefs of surgeons may also be well intended. I'm not criticizing Lizzie's surgeon. He likely thought what he believed was the truth.
Seprafilm and other adhesion barriers (such as Spray Gel) are used extensively in other parts of the world and very sparingly here in the US (Seprafilm is used more here than other barriers though.) The theory is this. In laymen's terms, healing and formation of adhesions happens the first 7 days post surgery. These barriers form a cellophane type wrap where they are put, the adhesions form, then the cellophane wrap barrier is absorbed and excreted from the body. The hoped for result is that the new adhesions that form are less dense and less in number. The issue is that Seprafilm used in open surgery just goes where it is layed on in sheets and from what I know does not go down in between the 30 feet loops of small intestine we possess. The Spray Gel used in laporoscopic surgery, from what I know, if lap surgery can be done, does seep in between the loops or wherever it is sprayed and might be more effective. Ironically Spray Gel is made in Waltham, Mass but is not FDA approved in the US. It is as I said used all over the rest of the world. (Having traveled the world in the last 3 years, I have found that the US is not necessarily the leader in all fields. No criticism, just and observation.)
I did ask my surgeon at Lahey if after an open surgery where adhesions were an issue, if laporoscopic surgery can be done, he said usually not because lap is difficult if adhesions have already formed. He said there is more chance of bowel puncture because it's like working to see through a forest of adhesions. SOme hospitals are more skilled at dealing with adhesions than others but he said that open so you can have your hands right in there is best for dealing with adhesions. Yet open surgery begets more adhesions. A vicious cycle. I have no guarantee that I will stay free of adhesion reobstruction and do worry, but at least I have been OK for 3 plus years now and am using my time the way I need to. I can't eat nearly what I want, but at least I have the gift of time and can eat.
I think it was Jen (?) who had some additional surgery and has had obstructions??? Sorry I lose track of who is going through what, but when more surgery was mentioned, the adhesion flag went up in my mind.
None of my comments about adhesions I have made are meant to reflect negatively on any of us or on any of your doctors (My defendants who did the 7 procedures many unconsented and only 1 that was needed, just removal of my right ovary, are the exception to docs and not the rule), luckily.
BUT I do think that we all need to be more proactive in speaking with our docs, our knowledge of adhesions, the existence and availability of adhesion barriers. One study done by Mark Puder, MD at Children's Hospital involved giving patients Celebrex, a strong NSAID, post surgical because in mice experiments, the mice had NO adhesions post open surgery. I mean this is some type of miracle! This was going to be tried on humans at some hospital out west I think. This arthritis drug had been taken off the market for some reason. I remember begging to be put on this after my ileo surgery as an additional protection in addition to the seprafilm. I was told NO because a side effect is it COULD cause post-op bleeding. So I did see my docs point. BUt the whole point of my dissertation is that there are efforts being made in the world of medicine to address this common yet little talked about surgically induced disease called ARD. Google Karen Steward and you should find info about her book "Pateints Bound by Pain, Doctors Bound By Secrecy." Her daughter had to go to Germany to some adhesion specialist to get straightened out. And then I guess she's had one small bowel adhesion obstruction since, but at least she is better.
I contact Synchion and the Adhesion Society to see why the risk of small bowel adhesions was not put on any elective surgical consent form. I did get an answer and they said they didn't know why. I know Lizzie's and all of your surgeries were needed and were different than mine that turned out on review to not be needed, but had I even heard of adhesion realated disorder years ago, I would never have even had my elective hysterectomy for a fibroid years ago, after which I developed the non-bothersome adhesions.
We have soooooo far to go in the world of patient information. I really pray for Lizzie and all of us as usual. Hope I provided some valuable information and did not offend. I just really feel strongly that ARD's has GOT to be publicized more. So often docs don't understand ARDS and they go about labeling the patients as neurotic, etc which we have all experienced on some level. I hope that after my case is settled I can be of some use in getting the information out there and maybe even contacting some places who are into adhesion prevention experimentation. If I get a settlement and can afford it, I would donate to the development of a cure for this potentially life threatening, surgically induced disease.
Just wanted to share all my knowledge of this that I never wanted to have in hopes it will help some of you when you speak with your docs and I sure hope something can be done for Lizzie. There are adhesion specialists. ONe I know of is in Canada. Maybe he could be requested by Cleveland for her. His name is on the adhesions web site. It can be found by googling Adhesion Related Disorders. Rosemary