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Hello I'm new but old to IC I m alone in this and needing friends that can relate...

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  • Hello I'm new but old to IC I m alone in this and needing friends that can relate...

    I have had IC since 9-15-04 well thats when I found out..I suffer so bad I am a slave to the poddy I am in such pain everyday not even talking about the flairs.. I tried all kinds of meds and was on 120 oxy20's and 120 oxy15's a month for pain I was still in pain but did have some good days..I couldent take the pain anymore I was going insain..well no more pain management Doctors only.. Then they said I have something for you ..A tens unit ...NO more pain ever ..I promise,,I got it the next week ..MY pain meds were cut again 50oc every two weeks imm..After the sergery..The tens unit hurts..My spine hurts..MY butt hurts pain from IC burning me up ..My doctors treat me like a drug seeker now and give me extra..Right now I'm in a flare 2 bactera's including ecolii suffer they say..No not really they just Scream at me and tell me thats it thats all They took my picture to a confrance they said it was the worst they had ever seen..I resentlly was in the hospital for vommeting fecal matter ..they said I have collites W/immflameation in my bowel IC of the bowel ..They {new doctors feel I hav MS } too I have a million referals but I am so scared of doctors and theway they make me feel..I can't talk to them ..I am greatfull that they havenot cut me off compleatly I can't take the pain it is ruling my life the burn..the fire..straight from hell I need to somehow get out of this mess I 'm so scared of doctors that when make app.it starts a flair just thinking about it makes my pain level go up ..I"M not crazy I promise I just hurt bad and its not in my head ..the interstem did not cure the pain at all instead I have more problems for me Iknow I feel that my doctors have been lied to about the interstem They usto look me in the face w/ concern and compashion now they feel like I am a lier.sad life huh what do you think?
    Last edited by ICNDonna; 04-12-2007, 02:32 AM.
    slavetothepoddy

  • #2
    Oh Sarah. I'm so sorry you are suffering so. It breaks my heart to read your post. I know that when I felt that alone the pain was just unbearable. When I found the ICN it made a huge difference just to know that there were others who suffered the way I do and shared my pain, would listen to me anytime of day or night...

    My greatest advice to you is to hang onto this board with everything you've got. Cling to the women here and don't let go. It will make all the difference in the world to how you survive this illness.

    You'll be in my thoughts and prayers. Please write anytime you need someone to talk to.

    God bless,
    Moonheart
    http://www.TheCraftyEwe.etsy.com

    Comment


    • #3
      to the ICN, You have found a super group for support.

      Comment


      • #4
        Dear Sarah,

        Welcome to the ICN, You sound like you are in great distress, and I am so, so sorry to hear about all you've been through. You've come to the right place to find understanding, and to share ideas and experiences.

        That was a bit of a rant, your post (which is not a problem --- rant away, we all need to do that sometimes), but I think if you could slow yourself down just a little and try to explain where and when each piece of your journey occured, then the rest of us might have a better idea of what's going on with you and how we can help. As I understand it, like most of us you have more than one thing going on. The digestive tract problem is not IC, but it's not uncommon for IC'ers to develop IBS. But vomiting fecal matter means there's an obstruction. So, I'm just not sure I followed all of that.

        One thing that did leap out at me is that your doctors think you have MS. Please, Sarah, if you have a referral to see someone about the MS, please, please follow through on it. Early treatment can make a big difference in how MS progresses.

        You sound overwhelmed, almost like you're drowning in this situation. The best way to deal with this is to break it down into pieces, and deal with one thing at a time.

        Are you getting counseling? Counseling is important for any chronic pain/chronic illness sufferer. Do you have people around to help you? Your cry touches my heart but I don't know how to help, other than to say, yes, I do understand and so do many others here.

        If you want to PM me, I can give you my phone number. Maybe talking it out "live" would help.

        Sarah, I just want to say, life is worth living, and people do care about you. I hope that we will be able to help you get your situation a little more under control, but at the very least we are here to listen and sympathize.

        Even though you're not really a new patient, I am sure you can benefit from reading the New Patient's Handbook, which is on this site, and from spending some time reading the boards and maybe getting some ideas.

        You are in my thoughts.
        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

        Comment


        • #5
          You're definitely not crazy - Interstim is not for pain control. We hear that every day here - that it is definitely not for pain. I am sorry you were given inaccurate information to base your decision on.

          What other things have you tried besides the pain meds you mentioned and Interstim?
          Kim

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

          *****************************

          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

          Comment


          • #6
            Sarah,

            I, too, want to welcome you to our group. I am not sure I totally understand all that you are experiencing along with IC. Am I correct in thinking you said you also have Ulcerative Colitis and maybe MS?

            I also have Colitis along with IC. Colitis isn't IC in the colon, but there are similarities. Colitis is an inflammation and ulceration (sores) of the lining of the colon. If you have colitis, it is very important you be under the treatment of a gastroenterologist (a specialist who deals only with digestive system problems). Just like with IC, when you have colitis there are many medications and treatments you can try. You need to do this under the care of a good doctor who knows what things are right for you in your situation to try and will guide you to finding what works best for you.

            I do know how frustrating it is to be forced to deal with more than one illness and many different doctors. You just want relief and are so frustrated! What helped me most was just slowing down and dealing with one issue at a time. Trying to deal with it all at the same time was just too overwhelming for me.

            The first step for me was to find the best doctor in my area for each of my conditions. First was making sure I had a good primary care physician who had a general overview of all that was going on and who communicated with my specialists. Second was finding a really good urologist I was comfortable working with for my IC. And finally I found an outstanding gastro doctor to help me with my colitis. If you aren't comfortable with your current doctors, there are places you can turn to that will help you locate good doctors. The ICN and the ICA both have resources to help you locate IC knowledgeable physicians. If your current doctors are not comfortable handling pain management for you, you might want to consider asking them to refer you to a pain management clinic where there are medical professionals who specialize in managing chronic pain.

            I would also encourage you to read and learn about each of your medical conditions. Learning about your illnesses will help you understand them and help you communicate better with each of your doctors. The Patient Handbook here on the ICN is an excellent resource you can use to read and learn more about IC.

            Let me also give you a little bit of hope. It has taken quite a bit of time, but slowly I have been able to get my IC under control and am now working on getting my colitis under control, too. There are lots of us with multiple medical problems and many in that situation, after some time and working with their doctors, now are feeling so much better and leading pretty normal lives. It can happen! I hope things will get better for you, too!

            Annie

            IC
            Ulcerative Colitis and IBS
            Pelvic Floor Dysfunction

            _________________________________________________________
            Retirement is great! Work is highly overrated!!!
            ---My dear hubby

            ________________________________________________________
            Never go to a doctor whose office plants are dead.
            ---Unknown

            Comment


            • #7
              Thank you for the notes I started balling

              Thank you for the advice and for hearing me i know each one of you can relate, I know that I may have not been to clear kinda jummbled cause I feel jummbled I've spent hours reading posts and wanting to reply but didn't. couldent figure out how...
              I am affraid of doctors I have had a few good but most treat me horrable.I wen't for bladder removeal and the doc said your too young but I'm not to young to suffer...I feel like an answer to my prayers has happened today I meet people who can relate to me I'm sorry that you too are having health
              problems I proably don't make much sence but I am overwhelmed thank you Ic angles
              slavetothepoddy

              Comment


              • #8
                Sarah,

                As an Interstim patient I can tell you I personally have gotten NO pain relief from it. I still must rely on Pain medication. Please don't do the interstim for pain control. It would be an extreme disappointment I am afraid.

                Comment


                • #9
                  I wish I could take some of your pain. You are truly suffering. I hope and pray that you will find some answers for your medical problems. I agree,,I would be overwhelmed. I know that stress makes a difference in how all of the organs of the body work. It seems a lot of you organs are being stressed.

                  Keep posting and say whatever you feel you need to say. And "talk" as mcuh as your fingers can go. Maybe that will be at least some form of stress relief.
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                  Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas
                  Louann

                  Comment


                  • #10
                    Hello Sarah. I am so happy you have found this site. Are you on the IC diet? Do you take elmiron? I felt like you were feeling when I first came down with IC. After a Hydordistention and being careful about diet and stopped smoking I now have many more good days then bad. That is just my story. We all are so different. One thing in common is the many great people on this site. They all care and understand. Hugs, Ziggy

                    Comment


                    • #11
                      Sarah, I are you from Missouri, PM me and tell me where in Missouri? I have ulcerative colitius and if you are in my area, maybe you could see my wonderful doctor. My IC doctor is pretty good too, since he is the one that finally diagnosed me.

                      Let me know so maybe I can help

                      Robin
                      The happiest people don't neccessarily have the best of everything, they just make the best of everything that comes their way!!



                      Meds:
                      IC: Elmiron, Tofranil, Hydroxyzine, Prosed DS, stool softener
                      UC: Asacol

                      Comment


                      • #12
                        So sorry to read that you are in pain. I have been there! Don't lose hope you will feel better someday soon. Just remember that you are now among friends and people who truely understand, so things are already starting to perk up.
                        Good luck and remember...this too shall pass.
                        Erin

                        Comment


                        • #13
                          I'm very sorry you are so miserable and hope you get some relief soon.

                          There are some things you can do to help you when you go to an appointment with a physician. First of all, write down your questions so you won't forget to ask them --- when we're nervous it's very easy to come away from an appointment without answers.

                          Another thing you can do is to do a pain and voiding diary so your doctor can see how bad your pain is.

                          Are you following an IC diet? That can be very important in helping control pain.

                          And I think it would be a very good idea for you to see a professional counselor to help you overcome your fear of doctors --- those of us with IC need our docs desperately and we also need to be able to communicate with them.

                          Sending warm well wishes,
                          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.

                          Patient Help: http://www.ic-network.com/patientlinks.html

                          Sub-types https://www.ic-network.com/five-pote...markably-well/

                          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                          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

                          Comment


                          • #14
                            Group Hug!! Pronto!!

                            I am so sorry to hear of your pain. It really, really breaks my heart. Your pain IS very real to you, and to us all. No matter how much it may seem at times, you are not alone. Please don't ever let the doctors make you feel any less of yourself. If they were in your shoes they would understand! But they are not, so please I beg you not to let them get the best of you! Please, keep in mind, that while your friends on here can't necessarily take away your physical pain, we sure wish we could!! We are here for you and one another. Always! We are sooo blessed to have one another to share in our experiences! We gather so that we may breed light from even the darkest of moments. We can provide endless support, love, respect, faith, hope, and inspiration. Regarding all elements of the past, the present, and the future.
                            I sense you are in deep mental despair from all of this. Which is totally normal, and expected. However, I am a very sensitive, not to mention, a very in-tuned empath. I became severely nauseous and extremely overwhelmed while reading your post. Moreso, than any post I've ever read before. A tremendous amount of conflict and pain is trapped in there, that eminates deep into my soul, straight from your own. I had to lie down for about 15 minutes. I even ran to the bathroom thinking I was going to get sick. YOUR PAIN IS VERY REAL!! Anyone, with any form of sense or sensitivity could and should confirm that.
                            I highly recommend you speak with a professional about your thoughts and feelings, if you haven't already. Psychologists are great, during particularly troubling times, for they let us vent about virtually all things without passing judgment. (That is of course, so long as they don't feel you are a threat to yourself and others). They often, offer no insight that would sway your opinion of self (or should). They merely help us to find the solutions for all of the answers into which we both hide and seek. I just feel that there is only so much we can do for you, and that some additional support to help keep your spirit up would be extremely helpful and beneficial for you at this time. Even if you just go for the time being, or call when you feel you need to set up an appointment.
                            Of course there, is the endless support to be found in this haven here! I hope that we are successful in helping you in any and every way possible that we know how! You are in my thoughts and and I wish for you all the best the world could ever offer.. and much, much, better days to come. Feel free to contact me anytime if you would like to talk. Please keep us informed as to how you are doing, because, we worry about you!! I know I DO!! Here is an to help you through..okay maybe to be safe.. here's another one too P.L.U.R. for all.. forever!! warmest regards,
                            Kirsti Dare
                            Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                            Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                            Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                            Comment


                            • #15
                              Group Hug!! Pronto!!

                              I am so sorry to hear of your pain. It really, really breaks my heart. Your pain IS very real to you, and to us all. No matter how much it may seem at times, you are not alone. Please don't ever let the doctors make you feel any less of yourself. If they were in your shoes they would understand! But they are not, so please I beg you not to let them get the best of you! Please, keep in mind, that while your friends on here can't necessarily take away your physical pain, we sure wish we could!! We are here for you and one another. Always! We are sooo blessed to have one another to share in our experiences! We gather so that we may breed light from even the darkest of moments. We can provide endless support, love, respect, faith, hope, and inspiration. Regarding all elements of the past, the present, and the future.
                              I sense you are in deep mental despair from all of this. Which is totally normal, and expected. However, I am a very sensitive, not to mention, a very in-tuned empath. I became severely nauseous and extremely overwhelmed while reading your post. Moreso, than any post I've ever read before. A tremendous amount of conflict and pain is trapped in there, that eminates deep into my soul, straight from your own. I had to lie down for about 15 minutes. I even ran to the bathroom thinking I was going to get sick. YOUR PAIN IS VERY REAL!! Anyone, with any form of sense or sensitivity could and should confirm that.
                              I highly recommend you speak with a professional about your thoughts and feelings, if you haven't already. Psychologists are great, during particularly troubling times, for they let us vent about virtually all things without passing judgment. (That is of course, so long as they don't feel you are a threat to yourself and others). They often, offer no insight that would sway your opinion of self (or should). They merely help us to find the solutions for all of the answers into which we both hide and seek. I just feel that there is only so much we can do for you, and that some additional support to help keep your spirit up would be extremely helpful and beneficial for you at this time. Even if you just go for the time being, or call when you feel you need to set up an appointment.
                              Of course there, is the endless support to be found in this haven here! I hope that we are successful in helping you in any and every way possible that we know how! You are in my thoughts and and I wish for you all the best the world could ever offer.. and much, much, better days to come. Feel free to contact me anytime if you would like to talk. Please keep us informed as to how you are doing, because, we worry about you!! I know I DO!! Here is an to help you through..okay maybe to be safe.. here's another one too P.L.U.R. for all.. forever!! warmest regards,
                              Kirsti Dare
                              Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                              Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                              Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                              Comment

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