I'm so glad that Cassie has pain relief available to her! I hate the thought of her suffering. I sure can understand that you hope that something can be done for her, it sure is no fun going through life always being in pain - especially when one is so young, and you see all your peers healthy and well, enjoying their growing up years. But I also know that surgery is not the answer to Cassie's problems - in fact I honestly believe that it could make things worse. As Karla said - you need to start doing a lot of research on adhesions for Cassie's sake. You and Cassie are going to have to learn how to cope with the adhesions, the bowel blockages and them pain. I know it is kind of like being given a life sentence - but there are no easy answers - and you can't change what has happened, you have to live with it. (I know how hard it is to hear this, and I am sorry that I have to say it to you - but I don't want to give you any false hopes).
Yep, my pain is more often than not excruciating. I have had may adhesions removed many times, but they always grow back - more severe each time. I have tried Seprafilm, two times but with no success, unfortunately. And of course, each time they operate it gets worse. There are no easy answers I'm afraid. My specialist is now waiting for the arrival of some gel, he told me that he has high hopes that this new product will work. It was his intention to try it on me first. But I have been disappointed so many times, and each operation, although fixing some things, have made other things worse.
Now I struggle thru life without a large bowel, and although am very grateful that I no longer have to wear a bag - and suffer the indignity of it coming off all the time - I still have problems absorbing the "good" things from the food I eat - each time I see my doctor he gets worried as I always seem to be undernourished. I try really hard to eat the right kind of diet - but there are so many foods my gut simply can not tolerate - and often what I eat comes out the other end without having been processed.
Now I am not at all sure about letting my surgeon use me as his first guinea pig - when the gel finally becomes available. I would hate to have another operation, and for it to fail, so I am seriously thinking of suggesting to Mr Schroeder that he try it on a few other people first - and that I would like to wait a few months, to see how successful this so called 'miracle' works.
In the mean time I am taking my pain meds for my pain, and concentrating really hard on positive thinking. I try to keep a smile on my face, and I am trying to be happy in spite of how horrible my circumstances are! At least I am alive, that is the thing I need to focus on every day - especially when I'm having a bad day.
I'm praying for you and Cassie.
Greetings from Lin in New Zealand!