Re: NEW MEMBER

From: Karla (ifirgit@new.rr.com)
Tue Nov 13 21:57:54 2001


Kimmi,

I don't see where you mention that you have adhesions, although I have no doubt that you do given your history. You may not want to hear what I am going to say and I am truly sorry to have to say it, but I feel that until you find a doctor that is skilled in the proper removal of adhesions (only a few in the world) you should listen to your doctors. If you are to have surgery just to try and eliminate the pain...you are going to end up with more pain than you have now...I can almost guarantee it. You will be lucky if you have a couple of pain free months. For many of us its a matter of a couple of pain free days...if we even get that.

You need to speak with Helen C. about finding a doctor who is willing to treat you appropriately for your pain. Do you take the pill form of demerol? I was told by one of my physicians that the pill form of demerol is not very effective. In my case, neither was the neurotinin until I was placed on high doses...and then my physician took me off of the drug because of its side effects. I believe I was taking like 1200mg four times a day. I was told by the pharmacist that any person in pain needs to be on this high of a dosage to have any effect. I was originally started on 400mg three times a day. I was also on ms contin at the same time.

Your doctors are doing you a favor by not operating on you. Look into the archives and educate yourself on adhesions. You will find there the questions you need to be asking your doctors. Most of us go to the doctor...the doctor tells us we need surgery and we say okay...when? How many of us research what these doctors should be doing and ask them about the methods that they will be using? We just accept what they have to say. I was the worst offender. My doctors told me over and over and over I need surgery and I accepted it. I have had about fifty surgeries in my entire life. Twenty-nine of them since 1991. They told me that I needed to have a bladder augmentation, but I later found out that it was adhesions that had wrapped around my bladder and if they had just removed the adhesions I wouldn't be where I am today. I ended up having to have my bladder removed and now have a urostomy which leaks urine all of the time...and not just little bits. I have a stomach full of hernias because I have absolutely no abdominal wall left. My ureters become obstructed when I sit or stand so I have developed severe kidney problems. My kidneys have shut down on a couple of occasions. I have been told that more surgery would kill me, but I have been told that the next infection could cause my kidneys to shut down and that they don't know if I will survive it. I absolutely need surgery....but noone will do it. I finally woke up to the fact that I had allowed one doctor to cut me open 26 or 27 times and things hadn't gotten better...only worse. So I hunted for a doctor who could help me. It wasn't easy. I finally found one, but it was one setback after another. On our first attempt at surgery I went into respiratory and cardiac arrest. It was over a year before they attempted surgery again. This time the surgery went okay, but about a month after they had placed the tissue expander I had to have emergency surgery to remove it because my body was rejecting it. Now I have been told that the reconstructive urologist is not willing to perform any surgery on me...he doesn't feel he can help. Without him my surgeon cannot perform the surgery. I immediately tried to go back to my original urologist because I felt he would at least try to straighten out the urinary diversion problem...but I was deeply disappointed. He no longer performs this type of surgery and is unwilling to help. He feels that the new doctor that handles this stuff will be unwilling to help as well. It makes me so angry because this is one of the doctors that got me into this position in the first place. Basically, I have no choice but to accept death. I cannot continue to run around the country searching for doctors. I don't have it in me and its time that I say enough is enough. I lay my life in God's hands. His will is mine.

Please go to the adhesion quilt and read my story. I have only touched upon it. I don't want to see anyone walking in my shoes and the only way to guarantee that is to avoid surgery at all cost until you find someone trained to handle your case.

God Bless, Karla N.

> ----- Original Message -----
From: Kimmi&Dave To: Multiple recipients of list ADHESIONS Sent: Tuesday, November 13, 2001 8:32 PM Subject: NEW MEMBER

Hi Everyone I am semi new to the group, has belong a while back. I am sorry to hear about you all suffering, living in chronic pain is not easy I know. But its nice to have others to talk too, something that I need lately. Here is a semi quick bio of me. My Name is Kimmi I am 34 years old. Married with 3 children. I have had 12 abdominal surgeries. I have been dealing with abdominal gyn related problems for 16 years. The last 5 years I am now in a chronic pain state. I had a TAH 5 years ago and that seems to be what sent me off on this whirl wind of chronic pain, and developing more and more health problems. The years before that it was generally all abdominal but my health has just deteriorated since then. I live with chronic upper and Lower abdominal pain and there seems to be nothing that helps. I have tried just about every kind of treatment there is for it, and all have failed. I am still in Physical therapy,Water Therapy and Myofasica treatments. My body has gone into a reconditioning state from living in chronic pain for so long that I began to lose all muscle strength in my body. I am currently on about 12 different medications to help with all these problems honestly they don't help much. List of meds have gone as high as 18. They are constantly adding and changing meds. I am sure you all can relate to that one. I have been on Demerol, Robaxin, and Neurotin for pain for the last 5 years. Each drug is maxed pretty high and still doesn't bring me much relief. Through the last 5 years I have developed many other problems here is a short list of them. Chronic Pelvic Pain,Arthritis,Fibro,MPS,TMJ,Trigiminal Neuralgia(Chronic head,neck and face Pain) Bulging disc in neck and face. Nerve damage in a few area.IBD,Intercystial Cystitis.Bursitis,Tendonitis,ulcers,gerd,hiatial,hernia,pancreatitis,endometriosis, I am one of those lucky ones NOT! that endo has never died off even though I have no female organs left, it has decided to move on to other areas. Bowel,Bladder,ect. So pretty much I am just one big walking ball of pain. I am really looking forwarded to talking to you all. Lately I have been having a really hard time with all of this. I am very tired of pain and there seems to be no escape. The doctors said I am non operable now and have tried multiple surgeons, they are afraid that it will cause more damage than good. I am not sure I agree with this one. To be pain free for a few months to me is better than not at all. They will only operate if something becomes life threatening. I constantly have partial bowel obstructions but with medications they pass so they won't even deal with that until becomes a full obstruction which is just waiting in the wind now. Well think I babbled on long enough. Hugs to all and hoping we all can have a pain free day soon. Kimmi


Enter keywords:
Returns per screen: Require all keywords: