rikam wrote:
> Oh Karla hugs to you. Maybe you could see a top notch surgeon at a
> University who may be able to help or a surgeon who'd be willing to
> have an adhesions specialist work with them.The supplements I take
> mostly have affected my overall physical health. They affect my
> ability to resist disease and maintain energy. They also have helped
> me to maintain weight and gain strength. I can sort of relate to you
> although for me it's not the urinary system; I have a colostomy. I
> cannot get a seal either. I can go through five flanges in a day so I
> usually get upset, rip it off, and leave it off. I've had so many
> embarrassing moments it's unreal. My kids were so afraid at first
> they wouldn't jump and sit in my lap anymore. They didn't want to
> hurt me. I went out to eat at our local restaurant. I live in a very
> small town. There is one gas station, one restaurant, etc. Everyone
> knows everyone. Well I went to lunch with the director of a nonprofit
> agency and we were seated by the front door. There are around ten
> tables in the place. When we were done eating I stood up and
> plop...a huge plop of you know what fell right on the floor at my feet
> just as the owner was walking up to me, The bag stayed attatched. I
> just wanted to melt into the floor. I didn't know what to do. I
> wanted to run. I've had that happen many times. My bag will fall off
> too. I was at church. There were only 20 or so people at the
> service. We had our eyes closed in prayer and we were all observing a
> moment of silence when gas passed. I had no idea I was going to pass
> gas. When I have a bag on it magnifies the sound against the
> plastic. I knew everyone knew it was me. I thought they were all
> going to break out laughing, either that or throw hymnals at me. I
> can certainly relate to the embarrassment. Last nite I began having
> difficulties with my colostomy. It feels different. It suddenly
> feels very flat. Normally there is an obvious bump, for years. My
> belly is very tender just below the colostomy and also to the side of
> it. I was shocked how tender it is. I'm not convinced it's
> functioning quite right either. I'm not in horrid excruciating pain
> but then again I do take strong pain meds so, I'll have to wait and
> see waz up with it. Please know, you are not alone. There is someone
> else right now sitting here by the computer who knows the
> embarrassment. Oh the smell too...I'm sure the smells are different
> but oh, the smell that comes from me. Every shirt I own is stained in
> blood and feces. There are stains the size of a grapefruit on every
> shirt I own. Then I could be talking to someone, I'll be totally
> oblivious to my colostomy, but notice the person is staring at the
> area. I'll look and usually it's bloody at my shirt. It looks like
> I've been shot. I have fabulous insurance that allows me to see any
> doctor I desire. I have awesome prescription coverage. For some odd
> reason they do not cover colostomy supplies. They are very expensive
> to purchase out of pocket. I confined myself to home for a couple of
> years. I couldn't go out. I was too embarrassed and humiliated. Oh,
> the humiliation is unreal. Black and White thinking can hide many
> options from folks. Like m.d.s feeling alternative medicine is hocus
> pocus and likewise the alternative folks feeling m.d.s will kill you.
> They can actually compliment each other. They can work together. My
> doctor was never interested in alternative medicine. He would very
> patiently listen to every new discovery I made. I thought he was just
> being kind hearted. Well, slowly he has been discussing alternative
> medicine with me. He even started reading books and asking me what I
> think of various therapies. Just like with everything else, even the
> medical field, you have to weed out the stuff that is based on hocus
> pocus. I am fortunate to live near Andrew Weil and much of his
> thinking has gotten through to those in our area including my
> doctor. I'll try various things for up to two years. If they work, I
> continue with their use, if they don't I stop using them. The entire
> family and the animals use alternatives as well. There are a few
> things I've found that work just as well as antibiotics, for me. If
> they were to not work then I'd take the antibiotics without
> hesitation. For instance if I'm ill I'll begin taking the alternative
> that works for me, I'll also see my doctor. I'll let him know what I
> started doing and whether or not it is helping. If it's a condition
> that warrants antibiotics he'll write a script out and tell me, "at
> this point what you are doing seems to be working. If your symptoms
> get worse or you don't improve within X number of days, begin the
> antibiotics." This has worked very well for me. I have to use
> antibiotics with a lot of caution. I've been able to keep away from
> steroids for over a year now. To me, those are results. My weight is
> at a good level. My muscle tone is the best it's ever been. My
> energy levels are incredible. I used to be wiped out all the time.
> This doesn't work for everyone. This is where it really pays off to
> know your own body. To be aware of it's signals. To be in touch with
> it. You have to care about yourself and in all honesty love yourself
> and the body God gave you just as much as you love the child he gave
> you and you gave birth too. Trust me, I know how hard it is. My body
> is a giant scar on the inside and the outside. My belly looks like a
> grenade went off on it. The scarring begins at the sternum and from
> there down and side to side it's an ugly horrible mess. At first I
> couldn't handle it. But I can now. It's part of me. I can rub my
> belly gently and baby myself because for me, it was an arrogant _ _ _
> who destroyed it. It was pure and sheer arrogance. He didn't even
> know why he did it. He had no clue and couldn't answer the question;
> Why did you do surgery? He had no idea at all. I have to love and
> care for this body that was destroyed by a surgeon. We are not
> talking just one little time either. It was harmed in multiple ways.
> The colostomy was the least of the problems. The colostomy is just a
> functional thing for me, it's the other medical damage that has been
> concerning. He ruined every aspect of my life, my family, our mental
> health, our finances, you name it. The worse thing he did was to
> destroy five years of my one son's life. Hang in there. You do have
> someone out there who can relate. I had contact with an awesome
> surgeon a couple years ago. Incredible surgeon incredible human
> being. Compassionate. I'll see if I can find his name again. I
> think he is back east somewhere. I've been fortunate to speak with
> many many doctors, surgeons, obgyns, pathologists etc. and have them
> share things with me that a lot of folks just don't know about. I
> guess after seeing what was done to me, they felt they could talk
> openly and honestly. I've come to learn the hidden side of the
> medical field as well as those who participate in that, and I've come
> to learn about those in the field who stay far away from it all.
> There is a lot below the surface that most folks never see. There are
> some incredibly good surgeons out there who are also incredibly
>> awesome human beings. ----- Original Message -----
>
> From: Karla
> To: Multiple recipients of list ADHESIONS
> Sent: Wednesday, March 14, 2001 5:38 AM
> Subject: Re: support group
> For me there really is no choice.....not in reality. I
> know that they best thing for your typical ARD sufferer is
> to not have surgery unless they are going to the best
> surgeon in this country. I am not your typical ARD
> sufferer. I have medical issues that far exceed adhesions
> now. If I am to have any hope for a life in the future I
> need to have surgery. I WILL die without it. I have been
> told that I will die with it, but if I am to have any hope
> it is only with attempting correction through surgery.
> Those are my choices plain and simple. When I say that I
> leak urine constantly it isn't like a woman whom has had
> children. I have a urostomy where urine comes out my
> abdomen. This has created a weakness in my abdominal wall
> (I actually have no rectus muscle remaining) and I have
> developed a hernia the size of a football surrounding the
> urostomy. My intestines are all protruding out to the skin
> and they kink off my ureters causing backflow of urine into
> the kidneys. This causes continuous infection that turns
> into urosepsis (infection throughout the urinary system and
> throughout my blood system). I must wear a urostomy bag
> attached to my stomach and due to the very large hernia I am
> unable to obtain a seal. Urine constantly leaks out the
> sides...and I am not talking of a dribble here or there. My
> urine has a very nasty smell to it and having a very
> sensitive nose, I know that the smell is always there. I
> don't want to go out into public....everyone can smell me or
> so I think and I suffer from extreme bouts of depression. I
> know that I indicated that I had decided not to have the
> surgery, but I have decided to give myself a little while to
> make that decision. I will most definitely postpone it.
> But to permanently cancel it is a most certain death wish
> for me. I guess that I must weigh my options...more
> critically now than ever. LoveKarla
>
>> ----- Original Message -----
> From: rikam
> To: Multiple recipients of list ADHESIONS
> Sent: Tuesday, March 13, 2001 8:11 PM
> Subject: Re: support group
> What you have to share with others is so very
> important. You have an important message that
> others need to hear in order for them to make an
> informed decision, to be educated in a well
> rounded manner, and to hear all the different
> sides. There are so many lives you could help and
> possibly save by telling your story. So many
> relationship you could strengthen. It's so
> misleading for folks to believe or be told the
> only solution is surgery. People need to hear and
> know the honest realities of surgery. They do
> need to hear both sides but it is not fair to
> leave out the down side of surgery. Some folks
> haven't stopped to think about how their families
> may be feeling. How afraid they may be. How
> scared they may live their lives in fear of losing
> a loved one. After listening to your message this
> is a wonderful time for us all to improve our
> personal relationships and find out how are
> families and friends honestly feel. They may be
> afraid to tell us. They don't want to sound
> selfish. They may be hurting inside and need us
> and need us to open the door for them to share
> with us. Your message is a reminder to us
> all. Basically I'm alive and sitting here and have
> a life because of my decision not to undergo
> further surgery. My decision is to do my best to
> keep my body as physically healthy as I possibly
> can so that should the day come, that I have no
> choice in the matter and I must confront surgery
> (more than likely on an emergency basis) at least
> my body will be in the best condition it can be in
> and won't have been compromised by too many
> surgeries. There are plenty of surgeons who I
> could ask to operate on me and they would. The
> ones who jump at the chance to do surgery on me
> have made statements such as, "I am the best. I
> have never lost a patient or had any surgical
> "mishaps". I am the best in town. " They are the
> ones who don't like their authority questioned.
> They make statements about what they've done
> (usually in all aspects of their lives). They
> don't like to be questioned as in, they are the
> doctor and they know what is best and they've had
> so much training how dare you question what they
> say. I'm speaking only about the ones I've had
> personal contact with. Not all doctors are like
> this. There are also many surgeons who won't
> touch me with a ten foot pole and rightly so. As I
> watch the sun rise and the sun set each day I
> thank God for the opportunity he's given me that
> day, I thank him for allowing me to see the rising
> and setting sun and to feel it's warmth. I ask
> for strength to help me through each day. I thank
> him for the blessings he's given me of my
> children, grandson, and husband. I don't complain
> about the pain. I work around it and work with
> it. It's trivial compared to what the options for
> me are. Any surgeon who thinks they can cure my
> particular problem or perform surgery on me in a
> safe manner is arrogant and I will run faster than
> a jackrabbit pursued by a coyote to get away from
> them. I know better. I do understand that there
> are those who have adhesions that can have surgery
> done and get relief for them. But there are some
> folks who surgery cannot help and for whom the
> dangers tip the scale so heavily that the risks
> far outweigh the possibility of relief and cure is
> out of the question at this point in time. There
> are some folks who would far rather live with the
> pain than risk compromising what health they do
> have, what enjoyment of life they do have, or even
> worse. I assure you your daughter is not alone in
> her feelings. My children feel the same way. It
> took a lot of courage for her to express her
> feelings to you as it did my daughter and my
> children as well. From the point of view of the
> children, they were concerned they were being
> selfish. I'm glad they are though. They knew
> that if I had surgery it would be highly unlikely
> that I would be able to get back up to the current
> level of health I now enjoy and that it would be
> difficult for me to get back to the same level of
> enjoyment I get from life currently. I would be
> compromising my current activity level for the
> hope of a little less pain. I'd rather enjoy the
> activity and deal with the severe pain. They also
> knew it could be an even worse outcome than
> that. Thank goodness there are medications that
> help with the pain and physicians brave enough to
> prescribe them. It meant the difference between
> living life laying on my side unable to stand more
> than a few moments each day, to being able to go
> for walks, play with the children, have a little
> garden, etc. It was a night and day difference.
> According to the pain group and their research,
> there are no long lasting or dangerous side
> effects from the medication I am taking. The
> absolute only risk is dependence. Well, gee...I
> can deal with that. I went for years with pain
> waking me throughout the night, unable to get back
> to sleep. Sleep deprivation is no fun, it leaves
> you angry on edge and cranky. I sleep most nights
> now. It's wonderful. I usually feel refreshed
> when I wake up. I feel pain as well, but heck, I
> can manage it. I suppose if they withhold pain
> medication from adhesion patients they would have
> an increase in the number of surgeries performed
> as it backs sufferers into a corner and leaves few
> alternatives. People do not want to live in
> pain. It's unacceptable. Folks need to have the
> best quality of life they can. They also should
> not feel backed into a corner or blackmailed into
> surgery. It's blackmail to tell them they can't
> have any pain meds to improve their quality of
> life but they can have surgery over and over and
> over. You can either go home and live in bed or
> submit to surgery. Well desperation will usually
> win. Hopelessness. Some folks know for a fact
> surgery is not going to help them and the risks
> are far too high for them. They need a choice
> offered. If a person turns down surgery they
> should not be punished by having medication
> withheld from them and I hope I see people
> fighting back and taking doctors to court over
> that one. It's black mail. Pure. Simple. I'm
> not making a generalized or blanket statement
> here. Those who are in this situation know who
> they are. There is a population of folks in this
> position. Those who cannot undergo further
> surgery. Their bodies are not capable of it. The
> risks are far too high. It's not fair to bring
> false hope to others either. There are folks who
> can be cured of their adhesive pain. But, not
> everyone can. It's awesome there is a group of
> "cured and pain free" folks out there but, to lead
> people to believe that everyone can be cured and
> pain free is very misleading and can be downright
> dangerous. Also to lead people to believe that
> Everyone can submit to surgery isn't right
> either. Not everyone's bodies are physically
> capable of undergoing surgery. Their health is
> compromised already and many have compromised
> immune systems as well. Blanket generalizations
> can get folks into trouble. Sharing of all info
> pros and cons and facts leads to educated
> decisions as long as the folks also consider their
> own circumstances and physical health. As far as
> alternative treatments go, people on the board
> have been silenced when suggesting them, not
> always, but enough that some folks are afraid to
> mention them and it seems to boil down to surgery
> being the best option. You can be left feeling
> downright icky if you don't agree with the
> surgical approach. If it's mentioned that
> complications happen more frequently than numbers
> indicate and why, folks are silenced, etc. We can
> talk surgery and it's plusses as much as we want
> though and that seems fine. Discussing
> alternatives and other options is valid too. They
> should be discussed as often as people want to
> discuss them. We don't always have to debate
> differing opinions. Sometimes we can just say,
> oh, okay but i personally don't agree with this.
> We certainly shouldn't put anyone down. There are
> some people who cannot have surgery. There are
> some people who will not risk surgery. They need
> to discuss options and how to deal with
> adhesions. Oh, and there are some folks who could
> have multiple surgeries by the best surgeons and
> still be in pain. Hopefully we'll hear from more
> folks about how they deal with pain and other
> symptoms.
>
>> ----- Original Message -----
> From: Karla
> To: Multiple recipients of list
> ADHESIONS
> Sent: Tuesday, March 13, 2001 2:09 AM
> Subject: support group
> On March 11th I wrote to this group
> explaining that I would not be posting
> for awhile because of the passing of my
> grandson. In reality, I have probably
> posted more since then, than I ever
> have. But that is because in the past
> this has been home to so much support
> and love. I thank each and everyone of
> you for your support during my loss, as
> well as in the past. I am scheduled to
> have the first of my surgeries on April
> 2nd but will no longer be able to do
> so. I don't think that I will ever
> undergo surgery. My daughter has begged
> me not to....she does not want me to die
> again...yes I say again, because I died
> last summer and was brought back. She
> does not want to lose me....something
> she couldn't tell me a couple of months
> ago. Actually, she did tell me
> that...but it was something that I was
> unable to accept...until her recent
> loss. There was no way that I was going
> to continue living with the pain...no
> way I was going to live looking like I
> am 9 years pregnant....no way I was
> going to continue to live with the
> constant leakage of urine....afraid to
> go out in public. But do you know
> what? It doesn't matter any more!
> Little does my daughter realize that her
> father's health is a real issue right at
> this moment. How can I possibly put
> myself at such extreme risk of dying so
> much sooner than I will if I wait....and
> yes, I will die, but maybe she will have
> time to deal with all of her pain and
> heal some of her wounds. So I have
> chosen not to have the surgery. This
> group has been the support that I have
> so desperately needed. It has provided
> me with a diversion from my
> pain...allowing me to reach out to
> others that suffer and need
> help...trying to prevent them from
> getting into the trouble that I now
> have. This is why, despite dealing with
> the death of my grandson, I have
> continued to reach out to this
> site...because it has given me strength,
> but I must admit that it has not been
> that way lately. This support group has
> now become the source of increased pain
> for me. I cannot continue to allow
> myself to be upset by words that are
> said...and words that continue to
> appear...if for no other reason then we
> fail to remove them from our own
> postings. Since I am chosing not to have
> my surgery perhaps it is best...if
> nothing else but for me...if I leave
> this group again.I wish everyone on here
> nothing but love and hope. I pray that
> you find the answers to your pain. I
> just beg of you to thoroughly research
> the doctors that you chose...demand to
> know what procedures they will be
> using....and demand to receive treatment
> according to your rights as a human
> being. I had considered removing my
> posting from the adhesion quilt, but I
> will continue to allow it to stay with
> the hopes that when people come to this
> site ready to jump into surgery, someone
> can point them to my story and ask them
> to read it and then at least take the
> time to research and ask
> questions. God's Blessings to all. Karla
> N.
>