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Why? WHY? Pain Medication Confusion....

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  • Why? WHY? Pain Medication Confusion....

    The only medications I take are Lyrica and Ambien daily.

    In May I had my entire bladder reconstucted and asked them NOT to give me pain medication. I also had my urethra removed and closed shut. This means I had my whole insides taken out, apart, and reconstructed. It was a 9.5 hour surgery and I was in ICU for 3 days and the Hospital for 7 days. I had an inscision from 2 inches above my belly button all the way down into my pubic bone. About 16 inches long with over 28 staples holding the two halves of me together. I had tubes and bags coming out of everywhere! I had two holes in my abdomen made, one going into the left side of me and a permanent one made out of my intestines on the right hand side of me which is called my stoma. That is where I get my urine out from. I did not touch a pain medication while there except for one Vicoden the day I began physical therapy. The doctors were begging me to push my Fentanyl button but I refused because I did not want to take the narcotics. I was in pain, but I pushed through it.

    So... you know I am in severe pain or I would not be asking for this sort of pain medication.The tailbone and PNE pain is so horrific right now, I don't care anymore, I just want some relief and now they are giving me a hard time.

    I asked a pain management clinic in my travels why they were so nice to cancer patients who were in pain. She told me that they would not ever become addicted because they were only going to be on medication a short time and if they did become addicted it would not matter because some of them were going to die. (This is quite absurd) But see I am NOT going to die anytime soon?? It doesn't make sense why chronically ill patients have to fight so hard to get the help they need.

    There may come a day where I may not be in pain anymore. Miracles DO often happen.... But for the times that I need some help, I would appreciate a doctor that understands this!

    Why??

    I just needed to get those thoughts and questions out of my mind and off of my chest so I can focus on continuing to effectively communicate with the doctors that I am lucky enough to have. Sometimes we all just need to talk out our feelings before we can continue to fight for our rights while dealing with chronic illnesses.

    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

  • #2
    I can't believe they won't prescribe pain medications for you. It just doesn't seem reasonable at all. Do you have a primary care physician who might help?

    Sending gentle hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

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    • #3
      kara that is ****!!!!!!!!! oh i am so angry for you.you would think by now they would know that you don't ever want it,and that your obviously in alot of pain that needs medication!!! i am so sorry,i would go to the er and get pain control.
      Last edited by ICNDonna; 02-17-2007, 02:19 PM.

      Comment


      • #4
        Keeping you in my prayers. I hope a doctor helps you soon.

        Blessings,
        Lori

        Comment


        • #5
          Kara,

          If they only knew how much pain that you are in!! It is not fair!! Maybe you can read your letter to them, or say to them what you have posted here, and maybe, just maybe, someone will understand and help you out!

          Sometimes it helps to vent and get it all out of your system like you did here.


          I hope and pray you get relief soon.

          Big hugs,

          Mel
          Meds I take:
          Elmiron, Elavil, Vagifem- for IC
          Albuterol, Flovent, Atrovent- for Asthma and lung problems
          Paxil, Clonazepam- for depression and Anxiety
          Atenolol- for rapid heart rate
          Nexium- for Gerd
          Levothyroxin- for Hypothyroidism
          Lasix, Pottasium- for edema
          Lipitor- for High Cholesterol
          I coated aspirin
          02 at bedtime

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          • #6
            So you didn't want pain meds for a long time, not that you were allergic, and now that you've decided to use them they won't give them to you???????!!!!!!!!!

            I've got to go assimilate this.
            http://www.TheCraftyEwe.etsy.com

            Comment


            • #7
              pain management

              I am so angry for you and for myself and every person out there that suffers with IC! How would they like to have their insides taken out and be denied pain releif! This is crazy!!!!! Have your husband call and DEMAND pain relief first thing tomorrow!(You are married right? I think I read your story!)That always works for me!My husband gets ****** watching me suffer and I have been denied pain medicine for the longest time. Now I have some form of pain management(norco 4X day) but it only works for a little while and the rest of the day I am in agony! But your case is so much more severe and the fact of them refusing to treat your pain is ludacris! Something has to be done so that IC patients are treated better and not questioned when it comes to pain management. You should have exactly what you need to be comfortable and not be in pain without a doubt! What is wrong with these Drs? It is getting to the point where I cannot take the pain anymore and I am tired of having to explain myself everyday and my condition to people who do not understand. I wish that this disease was more known and that all Drs were more educated on IC. And it would be nice if it were publicized like cancer and everything else out there! I know my post is not solving anything for you but it made me feel better getting this out! I am angry everyday and suffering! I am praying for you to get the relief you need and deserve! I hope you feel better soon!

              Comment


              • #8
                Jessica

                Jessica,

                I have never tried Norco. I will add that to my growing list of things I have not tried to give to my primary care doctor when he gets home in a week. He says if the pelvic pain specilaist doesn't give me pain meds then he will do it if he HAS to but he doesn't want to do it. It's just much easier if he does because he knows my situation and all the pain management teams that I have been to. He is also only 3 minutes from my house so if something doesn't work, I won't have to go far to pick up a new script to try. Your post was very helpful. Thank You!

                Thank you all for stopping in to answer this post! I appreciate the thoughts!

                I just hope my primary won't back out on me. A long time ago he was willing to presribe anything for me to try. He just gets so frustrated. Think how frustrated I feel, I'm the one in pain!

                Kara
                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                I also have some journals of my journeys, past and some present at:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                Comment


                • #9
                  Kara, Norco is simply Hydrocodone, without tylenol or with Less tylenol than lortab. I hope your doctor helps you soon.

                  Sandy
                  *IC-- Summer 2004; PFD--October 2005
                  *Fibro--Fall 2000; CFS-- Fall 2000
                  *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                  Total Abdominal Hysterectomy--adenomyosis--9\08

                  04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                  Comment


                  • #10
                    Kara, I have been reading your posts about the pain management issues you are having and trying to think of what to say. I understand your side of it- I was once in a similar position. I also have a sense of where the doctors are coming from too, so I hope what I have to say will not make you angry. I think the reason that the doctors are not giving you what you need is because you are telling them what you want. Now I understand you know what works and are frustrated by them not listening, BUT if you go in there and instead of telling them what you want, tell them or better yet have written down a sheet of paper what you have tried in the past and what your reactions were, then maybe they can make thier own decisions as to what to give you. Who knows, maybe it will be one the drugs that others on here have suggested? It also has to do with how how you say things and the tone of you voice as to how the doctors will respond, though I am sure you already know that! The suggestion about having your husband call is a good one, this is what finally worked for me in the end. My husband went with me to the doctor and we all talked about how I could function much better if my pain was addressed. My doctor listened, and he knows from over time that I do not abuse pain meds because I do not ask for them on a frequent basis. I also think think that your primary may be the best one to deal with all this, especially since you see other doctors and some of them not regularly. He is the one doctor you see on a consistant basis. Hope you can get some resolution to this soon. Hugs, Judith

                    Comment


                    • #11
                      Judith, I understand what you mean by asking for a certain medicine, but in my opinion only the jerk doctors are the ones that will turn you down. If you have a true caring doctor he will agree with you and try out what drugs you and the doctor think may work for you.

                      There are so many great doctors out there and there are the few that we all remember that are complete jerks who place themselves at the level of God.

                      A caring physician will ok your med request or suggest a similar one.

                      And for doctors that take a patients "demands" as negative, should step back and think "this person has been through hell and back and pain can cause people to do somethings they never would.

                      It all boils down to the doctor HAS to listen to their patients. Assume no one is a drug seeker unless otherwise proven, instead of assuming all people who ask for drugs are drug seekers.

                      Kara, you said that the one doctor would prescribe you the medicine if the other wouldn't. Call him/her up and say I am ready for my prescription, don't let the "oh, I can prescribe the drugs but....." They can and they would never do something to put their job in jeoparady. So that, "oh I am doing the biggest favor for you ever by doing this.....ITS NOT A FAVOR, ITS THEIR JOB. Don't ever feel guilty about asking or demanding. The way our society works is doctor's are given the almighty rights to the medicines we need and only through them can we get them. They should honor the position they hold and be gracious to others.

                      I used to feel guilty to ask for pain meds, now I do not hesitate to ask. I think doctors sense someone's uncertainty when asking for pain meds and know they can tell that patient NO and they will not argue back. But you stand strong stare them in the eye and don't show any fear and let them know you are not going away until you are treated with dignity, respect and pain relief!!!!!!!

                      Comment


                      • #12
                        The sound of Certain...

                        Judith and Toby,

                        I understand what you are saying. Both my primary and the pelvic pain specialist have a very long list of what I have taken in the past and what happened with each med. I wrote them up a few months ago for this very purpose. I believe the list was also posted somewhere on the boards around the same time I printed it out for them.
                        So that part is addressed.

                        I really don't want to go onto a long term narcotic that is in my body 24/7. When I was taking the Fentanyl, the constipation has caused an obstructed bowel that almost required surgical operations several times. And the pain of that alone is merciless. Not to mention the withdrawal symptoms that I had to suffer from for almost 4 months.

                        The other problem is that I am not sure what will help and not help as I have Multiple Chemical Sensitivities so for example they may prescribe a pain med to me, I fill it, and then I go home and take it, and it causes severe urgency and ex-urethral type symptoms that are unbearable. So then I have to call them back and tell them that I could not take it. And we have to start all over. Doctors of all types get real sick of this. It would be sort of the same type of thing when someone gets really upset stomach from many medications. I don't get that, I get severe ex-urethral pain/PNE pain. So I don't quite know how to handle that with the new doctor. Plus he is an hour away from here and many of those scripts have to be picked up if they are schedule II narcotics. Most everything else can be called in over the phone. But for those that can't, I am stuck.

                        My primary care doctor has said he has nothing to offer me in the way of help for the pain. He'll do things for me when no one else will because he feels sorry for me. He will make it seem like a favor. Toby, you are so right in saying that it is their JOB! I totally agree! Problem is, these days it seems very hard to find a one that will actually do their job without complaining about it. I do deserve dignity, respect, and pain relief and should be able to make the calls myself!

                        I need to have one of them willing to hang in here with me and keep trying, even if it means that they have to call something else in that very day. They are not the ones paying for it, I AM! I also pay them! They just have to take 2 minutes out of the day to call or write the scripts. Or better yet, I could have them work together on this so that one makes the suggestions and the one closest to me writes the scripts!! That would be great!

                        I can't change my voice but I can change my wording to sound certain.

                        Thanks for the advice ladies! I appreciate it so much.

                        I will keep trying and pushing forward!!!



                        Kara
                        Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                        "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                        I also have some journals of my journeys, past and some present at:
                        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                        Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                        Comment


                        • #13
                          Kara,
                          I am SO sorry that you are having to suffer because the docs don't want to do their job and try to ease your pain. When I was first diagnosed with IC, it was by my gyn, and he has always been great when dealing with my endo. Well, it seems that even though he knows about IC and how to diagnose it, the only meds he gives for it are Elmiron and Elavil. So, I tried those and was in horrific pain still. I went back and told him I needed pain meds. He gave them to me, but told me he was really uncomfortable with the whole thing. So, that's when I made the decision to find a new doc (a uro) that specializes in IC so that I could get ALL the treatment I needed, including pain control.

                          I don't know much about your docs, I mean, if you went through all that surgery, you would think they would understand the complexity of your problems and your need for meds. I get so mad sometimes at the true drug seekers, because they are the ones making it hard on those of us that really need meds. I was in the ER once, in horrible IC pain, and I overheard the girl in the next cubicle or whatever...long story short...she had CRAMPS! Just regular old menstrual cramps!!! Even the doctor said to her, "did you try some tylenol? Don't you think you should have tried something that costs a couple dollars before coming here and spending a minimum of $500, all wasted cause you have cramps?" I was so mad when I heard the whole thing, thinking, "here I am, in REAL pain, needing meds, and people like HER are wasting time and money and making some docs look at all of us funny when we need meds." I HATE it!!!! I hate feeling bad for asking for meds that I need!

                          I agree with the others about maybe changing your wording and tone. Should you HAVE to do that? No. But, some doctors are just picky about pain meds and don't want to be told what to give you...even though you may know the best! If you start asking for something specific, that's when the bell goes off in their heads saying, oh, she wants "x" she must be addicted to "x" and that's why she's specifically asking for that instead of letting me determine what the best course of treatment is.

                          I know it's crappy, and I hope that you can get some relief and maybe also at the same time do as you mentioned and get your docs to start working together...even offer to sign a pain contract if necessary so they know you aren't running around to all of them getting meds. And, the hubby idea is a good one...mine got me into the hospital and scheduled for a hydro last summer when I couldn't even get an appointment with the doc!

                          Please keep us posted on how things work out. Good luck!!

                          Claudia

                          ~Claudia

                          "A heart is not judged by how much you love; but by how much you are loved by others."
                          ~ The Wizard of Oz

                          "If I ever go looking for my heart's desire again, I won't look any further than my own
                          back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                          Comment


                          • #14
                            Kara -- It's a rotten situation that you are in right now, and I am so sorry that your doctors, who are supposed to help you, are actually making things harder.

                            I know from your previous posts that the doctors you are referring to already have a complete list of all the meds you have tried in the past and what your reaction was to each. I know from my own experience that there are times, when the case is complicated, that the doctor becomes frustrated and takes it out on the patient. And a glance at your records would serve to remind the doctors that you have consistently resisted taking narcotics in the past.

                            Wow, I don't really know how you can "change your voice." Interesting concept. Irrelevant, but interesting.

                            Ideally, you and your doctor are supposed to be partners in your care, particularly in the management of a long-term situation. I was a little taken aback by the suggestion that you should describe your situation and tell the doctor about all your past experiences (which you have, of course, already done), and then hope that he comes up with the answer you are looking for. It is not your job to coddle his ego. It is his job to listen to you, and then try to help you, especially since you are paying him.

                            I wish I had a constructive suggestion. I can only say that I am sure the communication problem is not your fault. Given the number of doctors you have had to deal with over the past nine or ten years, and given your high level of intelligence and education, I think you've probably figured out "Dealing with Doctors 101". Some doctors are just difficult; others are lazy and really just don't want to deal with complicated cases like yours. I say this because it is true. I do not hate doctors. My brother is a doctor, my sister-in-law is a doctor, and my brother-in-law is a doctor. And any one of them would say the same: Some doctors are just jerks.

                            I wish you good medical care from your doctors; support from your support group; a final diagnosis; and most of all I wish you relief from the pain that has taken over your life.
                            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                            Wishing you happiness and good health, and all the best out of life.

                            Peace, Carolyn
                            ___________________________________________________

                            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                            On the Beach with IC

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                            • #15
                              I think the "changing your voice" thing actually meant tone of voice, not as in imitating someone else or something, LOL. I think someone had mentioned that maybe if Kara changed her tone to one of more certainty and necessity, she may get better results.

                              Either way, it's not right and it's not fair. Kara shouldn't have to be the one doing all this work and begging and pleading for some pain relief. But, I think we've all dealt with difficult docs and sometimes it's easier to try and appease them in order to get what we need rather than being all "hard" because we shouldn't have to play games.

                              Kara, I am again so sorry that you are having to deal with this and I hope that you can get the meds and comfort you need very soon.

                              ~Claudia

                              "A heart is not judged by how much you love; but by how much you are loved by others."
                              ~ The Wizard of Oz

                              "If I ever go looking for my heart's desire again, I won't look any further than my own
                              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                              Comment

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