Re: support group

From: rikam (
Wed Mar 14 07:50:21 2001

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 b ody 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.

Love Karla

> ----- 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 way I was going to live looking like I am 9 years 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.

Enter keywords:
Returns per screen: Require all keywords: