Everyone should read this!!!!!!

From: International Adhesions Society (tracy.joslin@adhesions.org)
Tue Feb 3 22:49:56 2004


From: K NygrenSent: Tuesday, February 03, 2004 2:37 AM Subject: Everyone should read this!!!!!!

Mandy,

What is a laproscopic scan? Is it an invasive procedure.... meaning do they make the small incisions in your abdomen? That is all I could think of...and it sounds a little drastic considering even laproscopies cause adhesions. There is no x-ray or upper gi, lower gi, small bowel follow-through, ultrasound, ct, or mri that shows adhesions. The doctors certainly cannot determine if you have adhesions or not by feeling your stomach.

I have been posting on this site for years. Not so much anymore, as I am in a daily fight for my life, but I do attempt to follow things as much as I can. I have made some sporadic postings lately, but it seems as there are only new people on this site anymore. I am not saying that there is anything wrong with you new people, in fact, I feel sorry for anyone who visits this site as either they have this dreadful disease or they have someone close to them that does. I haven't said the following in too long of a time. It is a very crucial message that everyone needs to hear.

The BEST surgeon in the world is one who says no to more surgery. Over 95 percent of the adhesion sufferers on this site have adhesions from surgery. (This could have been surgery you had as a child and are just now developing problems from.) I would guesstimate that 3 percent have adhesions from infections (endo or otherwise) and that the remaining 2 percent have adhesions from blunt force trauma (accidents, being kicked in the stomach, etc.). These are my numbers and are not in anyway declared to be factual. I believe that the biggest location of most of our adhesions (those who come to post here) is the abdomen, but I have heard of the knees, hips, back (quite common actually), the heart, carpal tunnel, lungs, and now the eyes. There are most likely other areas but it is 1:48 as I write this and my brain is fried. The question I ask of each and everyone of you is: WHY would you want to subject yourself to having your problem worsen in a few days, weeks, months, maybe even a year of being pain-free? There is NO CURE for adhesions. None of the barriers...including seprafilm, have proved to be effective in preventing adhesions. In fact, many of them leave us with more problems than we started with. Each and every surgery you have makes your adhesions worse.

Adhesions actually begin reforming during surgery and stop forming up to two weeks later. NO new adhesions form as the result of surgery after this point. But, they do continue to tighten and pull and cause a LOT of pain. You may think that you have adhesions forming but it is just those that you do have becoming stronger, attaching themselves to body parts that it shouldn't and causing you more pain.

Is surgery worth that month, or year free of pain?? I say absolutely not!!!! For those of you who know me, you know where I am going with this. For those of you who don't? Read my story on the quilt. It hasn't been updated in quite awhile, although things haven't changed much. My situation is now dire and I now have advanced directives stating that I am not to be treated with any more antibiotics anymore. That is probably my death sentence, but I'm ready. I am now in the hospital every two to three weeks. Despite being on four separate IV antibiotics at one time, I leave the hospital with new infections already beginning. My body is becoming toxic on those very antibiotics that have kept me alive the last year or so. I know that I am now at the end, but I'm not going out without trying to prevent at least one of you from walking the same path that I did. I am now post-30 surgeries since 1991. It does not include the surgeries I went through to place nephrostomy tubes or anything kidney related. It also does not include surgeries prior to 1991, such as tonsils, appendix, thyroid tumor, a hernia, numerous surgeries for burst and infected cysts on the ovaries and finally a hysterectomy.

Please don't tell me that even a year free of pain would be worth what I am going through now. But, please think long and hard before you agree to another surgery. Go back and read all of the postings in the archives. That would be a huge task, but one that will provide you with quite the education regarding this disease you suffer from. In particular, look for postings from Helen Dynda, they are all very educating and well worth the time spent. You might want to keep track of the postings from Helen that you have read, because as new people came she would repeat her links and messages to everyone. If you can keep track of what you have read then you will save yourself some time. Personally, I think the more you read her messages the more my message might sink in.

There are people who die from this disease. Personally, we have lost two individuals from our very small adhesions support group here in my town. I will be the third (to all my friends back home, SMILE....I'll be up in heaven trying to educate GOD. Maybe then something will be done.) to go, but it will be with the knowledge that I have done all that I can to educate other sufferers and their families.

Please don't think that any of you are immune to my sufferings. It doesn't all lie with the adhesions. Each surgery that you have puts you closer to death. Your body can only handle so much. There is another disease out there....its initials are very similar to ours. It is ARDS...or Acute (or Adult) Respiratory Distress Syndrome. Take time to look this up. It is a very scary disease. I survived it once, but each time the odds are more likely to fall against you. In my case, my odds are great. But, we're not talking my odds. We're talking DO YOU REALLY WANT TO SUBJECT YOURSELF TO ALL THESE RISKS THAT CAN AND DO HAPPEN, MORE THAN YOU WILL EVER REALIZE?

What everyone needs to do is seek out adequate pain-relief. If you can't get it with your current doctor, look for someone who will give it to you. Keep looking until you find it. But, unless it is a medical emergency, don't have more surgery. You can live with hernias, unless bowel is incarcerated (my latest hernia is more than the size of a football, but I have lived with it for close to five years now), you can live with pain. When I first joined this list I thought there was no way I could make it those couple of months until I could get to one of the few hopes there is at a good adhesiolysis. It has been five years now, and I still haven't gotten that surgery. I have lived through all of the pain I thought would kill me. My pain scale is always in the 7-10 range. A 7 is the best that I can hope for. I consider myself to have a high tolerance for pain too. It can be totally unbearable, but you can still live through it. I don't focus on MY problem, but work at trying to help others as much as I can. I can't do that too much anymore. It takes a lot of energy and admittedly I have gotten somewhat discouraged in the past when people have rushed off to get surgery from this doctor or that doctor and here I sit. Then I see that they are back to the list, with much more pain than they started with. Do I feel vindicated? Absolutely not!!! No matter who you are, how many surgeries you have had, I want to find an end to your pain. By the way, just because you've only had 2, 5, 10, or maybe even 20 surgeries, doesn't mean that the next one won't leave you like me, or perhaps even dead.

PLEASE, OH PLEASE, CONSIDER YOUR OPTIONS VERY CAREFULLY!

God's blessings to you all! Karla


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