I have not written here in ages, but I have been feeling more and more that something needs to be said. Please take the time to read my story on the quilt so that you can have a better understanding of why I am saying what I am going to say.
As adhesion sufferers we find ourselves in pain day after day. Pain that no individual should have to live with. We search endlessly for answers and the end to our pain...frequently in vain. Then we are told that we need surgery for whatever reason they tell us. They go in and lyse the adhesions, close us up and send us home. Did we get that miracle cure? In 99% of the cases the answer is emphatically, NO! As a matter of fact, all too frequently we find ourselves suffering in worse pain within months, maybe even weeks. Adhesion sufferers are really in a no-win situation. Until some cure is found, the best thing we can do is avoid surgery.
I know that you all are suffering....believe me, I understand that completely. When I first found this site 6 years ago, I insisted that I could not wait the couple of months that it was going to take for me to get in to see Dr. Reich.....the pain was too severe, I was dying and I needed surgery immediately. I had already had in excess of 50 surgeries in my life...at that time I had had around 25 of them within a five year period. I had another huge hernia....the size of a football surrounding my urostomy (I had my bladder removed...see quilt story) and it was causing considerable difficulty with leakage, etc., not to mention the pain.
But, I found this site, THANK GOD!! and was able to educate myself. I realized that I had allowed doctors to use me but in the process they made my life worse. The best thing we can do for ourselves is to say NO MORE SURGERY!! Easy for me to say, right? No. As I have said, I have been there. I have believed that having surgery even to have just a couple of weeks pain free would be worth it. Was it? Heck no! I live a live of hell right now. I no longer have kidneys and must go through dialysis three times a week. I have been unable to keep my diet in check with the fluid and phosphorus & potassium limitations. Now all the veins in my body are clogging up with calcium and it is getting more and more difficult to walk up and down the stairs and do other activities. The dialysis is so debilitating for me. But, I must keep on going.
We need to become our own advocates. No one else is going to stand up and fight for us. You need to ask your doctors that are telling you that you need surgery if it is life threatening. If they say no, then avoid the surgery. The only time a hernia really is a problem is when there is an obstruction. Many of my surgeries were for hernia repairs (the doctors say my abdominal wall ...what is left of it...is swiss cheese) but only one was an obstruction. I have learned to live with the pain. I sought out pain management until I found a doctor willing to treat me adequately. I also learned thru experience that the best medicine for pain is keeping myself busy and occupied so that I don't focus on my problems.
Yes, life can be hell, but its what you do with it that makes it that way. Until we can find an answer to our problems, our only solution is to avoid that which causes our problems or makes them worse and that is surgery. Lets say that you had a new car and you took it in to a mechanic because it was stalling on you. He tells you its the carburetor and replaces it. It runs okay for three days and then it starts stalling again, this time even more frequently.
You take it back to the mechanic and he tells you that its the starter. He replaces it and sends you on your way....a few pounds lighter in the wallet. On the way home, the car stalls again. you call the mechanic and he comes and tows you in. This time he tells you that you need a new engine. Do you let him rip out your engine? Of course not!
We won't allow ourselves to be walked all over by mechanics or other people regarding our personal possessions, its about time we stand up for ourselves when it comes to our own bodies. Picture your life the way it is now....how unbearable it is. Now imagine it being ten times worse. Maybe more. We are all having troubles living our lives with the pain and problems we have now...can you imagine living with it worse?
I am trying to save you all from going through what I have gone through. Only you can make the decision. Is it a medical emergency to have the surgery? If not, you can bet I'd be saying no!
God Bless you all!
Karla