I have not written in quite some time and unfortunately I do not feel up to returning to the group at this time. As you know I am now being denied even the antibiotics to treat my urinary infections. Over the years I have developed allergies to the main drugs used to treat these infections. I have also developed a resistance to those drugs that I am not allergic to. At this point there remains one antibiotic that is effective. It must be given via IV. My doctor does not want me to develop a resistance to this drug as well, so he is allowing my infections to go untreated. When I become critically ill they will give me the vancomycin. My fear is that the untreated infections will only serve to damage my kidneys further, hastening my death. I believe that we are in a catch-22. I understand their intentions and they understand my concerns. I just know that even though I have accepted the inevitable, I still want to fight!
I read Mary-Ann's response to Monica and it sent chills up my spine. Mary-Ann, I am not trying to pick on you, but it is my opinion that we must discourage surgery at all costs. Any surgery, other than emergency surgery, should be avoided. For the most part, we all have adhesions that dangerously effect our bowels and threaten us with obstructions. But to suggest that we have surgery to correct the situation is something we all need to refrain from doing. If Monica has surgery to remove her adhesions as she already has done four times(?), they are sure to return and it is extremely likely that they will be worse than before. We all experience times when our bowels partially obstruct and the pain is very intense, but eventually they work themselves out and life continues. If they were totally obstructed the pain would be utterly unbearable. I have had obstructions and it is definitely unbearable. It is at these times when our lives are in danger. No doctor will allow someone with a total obstruction to walk the streets. I think that you are very lucky to have a doctor that recognizes that adhesions cause pain. Many of us don't. I am fortunate in that respect as well, however that does not mean that I am given adequate pain control. These doctors are fearful of treating us with the medicines that we deserve, so often we are undertreated and live our lives suffering day after day. No one deserves that. I believe that our government or the AMA needs to go back and reteach surgical procedures. There are only a few doctors in this world that utilize the proper techniques in their surgeries. These techniques have proven to help prevent the reformation of adhesions. Are you aware that back in 1932 the government was told that it was necessary to use these procedures to prevent adhesions? Even back then the percentage of adhesions following surgeries was extremely high yet no one heeded the advice that was given following years of research.
It is extremely important every time we are about to undergo surgery that we ask many questions. We must be the informed consumer. Is this surgery necessary? Why? Can I get a second, third or even fourth opinion? What techniques do you use? How many times have you performed this procedure? What is your success rate? Can I contact some of your patients? I am sure there are many more things that we could and should ask. No question is stupid. We cannot accept what the doctor has to say as what is best for us. It can and will get us into extreme trouble. Look at me. I believed and trusted! God only knows why it took me so long to say enough is enough! It is not a bad thing when a surgeon refuses to do surgery although we probably don't agree with him/her at the time. For the most part, it is a good surgeon that says no.
Each one of us believes that we cannot endure the pain anymore. When I came to this group back in 1999 I wanted to get out to New York (he was in NY at the time) to see Dr. Reich. He was the only one that I would allow to touch me. I came to this group in October and insisted that I would not live until January. I had to have my surgery NOW! As time moved on the date got further and further away. Then I was told that I had to have surgery to correct the problems that had been caused by the negligence of my surgeons before Dr. Reich could perform my adhesiolysis. I had to scramble to find a surgeon. I even went back to my original surgeon in Milwaukee, but it was his ignorant statements that prevented me from making yet another mistake. I finally found a doctor willing to help me out. He was from your area too Mary-Ann. He is located at Weiss Memorial. Unfortunately, everything went wrong. I know now that I will never get out to see Dr. Reich. It has been almost three years since I joined this group and I am still alive. I live through the most horrific pain every day. Pain I never felt I could endure. Yet here I am. Yes, I am in a very precarious state and thoughts of suicide often fill my head. I know now that I can live through the pain but I struggle daily to live through the inhumanity of my life and yet I still survive. What I am trying to say is that we can get through this pain without the surgery. Except for some extreme circumstances we aren't going to die.
Each person has to find their own ways of coping. With me it has been in keeping myself busy and not focusing on the illness and the pain. I loved coming to this group and trying to prevent others from making the mistakes that I made. It is my frustrations that have taken me away. It is hard to continue being positive with people when they don't seem to listen. It is hard to listen to some of the bickering that goes on over the least little thing, yet I understand that we all are suffering and we tend to overreact. It is also hard to continue to come to this group and maintain a positive attitude when you know that you are dying and there is nothing that can be done, yet you see people not heeding your advice and going out and repeating your same mistakes. You see, preventing others from taking my road gives my life purpose. Yes, I may die, but at least I will have died knowing that I helped stop someone from making those same mistakes. But when they make those mistakes you question your life. You question whether it is of any value since noone seems to hear what you are saying. That is where I have found myself. That is why I stopped participating. I will not bring my negative feelings to this group. We cannot continue to focus on all of the bad in life. No, we weren't dealt the best hand in life but it is up to us what we do with those cards. I don't want to bring anything negative to this group because it brings everyone down. I am not saying that we can't share our pain. Its how we share it that matters.
When I read your post I had to respond. I pray that you don't take offense to my response. It is just extremely important that we discourage people from jumping into more surgery. I would be willing to bet that just about all of us have adhesions that "are strangling your insides". You are not the first person to make these suggestions and I am sure you will not be the last. It is unfortunate that in this day and age we must be responsible for educating ourselves but we are so lucky to have the methods with which we can perform the research. Now we must take the time to learn. I can only repeat over and over how desperately important it is for each and every one of us to educate ourselves about adhesions. Take the time to read the stories on the quilt. Devote the time to read them all and then place your story on it as well. To me, it is this quilt that educates the most. No one should miss it.
People have spoken a lot about the drug neurontin. I was placed on this drug about a year and a half ago. It did not work very well, however during one of my hospitalizations I had a visit from the pharmacist to discuss my pain control. He informed me that my dosage was way too low to have any effect. They increased my dosage to what I believe was 900mg 3x's a day. It could have gone higher. It was also at this point that my ms contin was increased. This combination brought me the best pain control that I ever had. Unfortunately, when my kidneys shut down I was taken off the neurontin because of potential side effects. My pain control has never been adequate since.
I pray for each of you daily and hope that some day an answer can be found. There is a new product on the horizon that has me very excited. It will never help me and perhaps it will be too late to help many of us. But the knowledge that it could prevent my daughter and my two beautiful granddaughters from living this same life is enough for me. This product is called Spray Gel and I believe it was used on Helen Dynda in her recent surgery. It was developed by Confluent Surgical Group and from all that I have seen it appears to be something that will work. I have never become excited by any other product...not even Intergel, but SprayGel causes me to get goosebumps. While in the placement of Intergel surgeons were not allowed to perform the appropriate surgical techniques, these techniquest can be applied with the use of SprayGel. Clot evacuation, copious amounts of saline solution, gentle handling and all those other techniques that I have forgotten are all methods of preventing the reformation of adhesions and now when used in connection with SprayGel the possibility of adhesions returning is greatly reduced. This product is available in the UK, Germany and Australia. It is being used in random trials here in the U.S. I believe the two states that are performing these trials are Texas and New Hampshire (or perhaps Rhode Island). I would recommend that no one rush out to volunteer for the trials as you cannot be guaranteed of having the gel used. This would only serve to worsen our conditions if the product was not used. I hope that you all will share in my excitement regarding this product. While it is somewhat frustrating to see these products developed and know that they cannot be used to help me, it only serves to motivate me to continue to reach out to adhesion sufferers around the world in an attempt to educate.
God Bless you all!
Somewhere up in the stars................. My angel and me!
>----- Original Message -----
From: "Mary-Ann Karaganis" <firstname.lastname@example.org> To: "Multiple recipients of list ADHESIONS" <email@example.com> Sent: Tuesday, January 29, 2002 9:31 PM Subject: Re: physicians
> I don't know of any in Milwaukee, but I'm an hour and half drive south
with > GREAT doctors! I live in the NW suburbs of Chicago, and my internist not
> only believes that my problems stems from the adhesions, but also makes an
> effort to help me with the pain.
> What you're describing sounds extreme enough to warrant surgery to clean
> things up. Yes, I know there's a danger of it coming back, but when the
> adhesions are strangling your insides, you have to get rid of them.
> Hugs to you. I'm thinking of you.
>> ----- Original Message -----
> From: <Bulldoggraphics@aol.com>
> To: "Multiple recipients of list ADHESIONS"
> Sent: Tuesday, January 29, 2002 8:54 PM
> Subject: physicians
> > Does anyone have any references or any knowledge of any doctors in the
> > milwaukee area who have heard of adhesions and believes they are
> > I sometimes feel my only alternative is that i will die - as the other
> > physicians i have visited - dont believe me. I live with bowel
> > and cant eat or pass anything. i dont know what to do or who to try. it
> > been a 12 year struggle. the major struggle is trying to talk a
physician > in
> > to doing a laparoscopic surgery to appease me.. and if they see
adhesions > to
> > please laser them. This takes months to talk a doctor into this. by
this > > time.. i have lost my job... lost my insurance... lost patches of hair..
> > teeth break off... its an awful situation.
> > thank you