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  • Back from surgery


    Ohhh you all will not belive this!!!!!!!!!!!!!!!!!!
    TOdays surgery was not so great. THey had me there 2 1/2 hrs early. When they told me not to eat after 8pm the night before, and i didnt have to even be there till 12:45pm. Then we get there, and I didnt even get into the surgery room till about 3:40pm.
    THey had a horrible time even getting the IV in, 3 pokes, 2 differant nurses. Then Finnaly they get me to the waiting room for surgery.THey gave me this very nasty stuff to drink, for acid reflux. It was very acitic. I took it and i tell them it was hurting my stomach. WEll then they get me into the surgery room, and I dont even remember it. was waking up, and i felt funny, and i was choking. I was told I threw up during surgery! I never done anything like that before! My throat is raw from all the acid, and the tube they had in scarped the back of my throat i litterly have cuts on the back of my throat, looks like bleeding. Hurts really bad.
    NOw the Good/bad news, I dont know what to make on it. This doctor tells me, you dont have IC. that my bladder was perfectly normal. I Personaly think my doctor was on more drungs then i as during the surgery,lol...i cant prove it i never even saw her at all...she talked with my mom. said i have to make an apointment to see her.
    Its just been 1 years 2 months since my last cyst.hydro... How can one doctor see it and another doctor not? I dont undertstand. I know the 1st doc said it was only 5-10% effected. Could this year on the Elmiron heal up the cuts?
    I am just so lost for words. I have no idea what to think. On thursday I am to go to a psychological exam for the Disability evaluation. The whole basis for it was that i have IC. now they say I do not. I dont know what to even think or do or even to say about this mental exam.
    IF i was pain free, and they say ok you dont have ic, I would be so happy. But i have constant pain. It never goes away. Before she thought it was pelvic floor dysfunction. before is march 20th, when she said that to me.
    I really am just at a lost here. Its a horrible year, pain wise. I been threw a lot of doctors, and a lot of crap. I thought well at least I had a name to what is going no. Now they take that away from me today. I have no idea what to do now. Im sure with in the next week or so i will go see her. BUt im sure it will be pointless. Even my ob/gyn, wanted to send me to her. So then I have no options left.
    Any Ideas???Expecialy when when i go to the psychological exam. I have no idea what to be saying when i go there. and after today am at a lost.....
    thanks for any advice.
    wish everyone is well and taken care of them selves
    thank
    stacy


    Current Conditions:
    Endometriosis,1995
    IC,Feb 06
    IBS-C

    Prenecious Anemia
    Stomach Ulcers
    Duodenitis
    Acid Reflux
    Low Blood Sugar
    Hypothyroid
    Migrains

    Surgeries
    Laporoscopy-1995
    Gaul Bladder-1996
    Laporoscopy-2005
    colonoscopy2005
    cysto/hydro-2006
    cysto/hydro-2007

    endoscope-2007

    Meds:
    Elmiron,100mg 2am 2pm
    Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
    Elavil, 150 1pm
    Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
    Prilosec,20mg 1am 1pm
    Zoloft,100mg 1 pm
    Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
    Reglan, 10mg, 1 3xday with meals-for duonditis
    Ultram 50mg 1 every 4hrs as needed for pain
    Pyridim,100mg as needed
    Vicodin 5/500 as needed for pain
    Heating pad
    Ice Pack
    Arthritis Pain Equate brand 650mg usualy 2 at a time
    Stool softeners w/stimuli, 2am 2pm[/COLOR]

    Hopefuly no more gets added to the list!!!

    I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
    Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
    My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
    When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
    Dont forget to take care of you!
    Take care

  • #2
    HI;
    I dont know anything about a potassium sensitivity. Im not sure if that was ever done. I did have the letter from the 1st doctor saying i have IC, its what i have been dealing with.
    The first cysto/hydro i had done, my bladder was smaller then normal, and had to be streached, to was only 700cc, something like this and was able to get it to 900cc.
    But the doc told my mom it was normal size now. Which i dont belive cos i am, getting up to pee at night lattly. But also I am having a hard time to empty out my bladder. every since i see this doctors. they have to do a cathider. And I go, but then they did the instilations for like 4 weeks. they acculy where making the pain worse, but when they did the instilations, i thought i was empty out, but they would get about 200-300cc out threw the cathider.
    My mom is instisting i get my pituitary checked. Her friend has had so many issues like i do, gets every medical problem there is, and not geting better. Then she had hers checked and it wasnt working properly. She has to give her self a shot every day. but I guess she is so much better. I am not sure if thats something i need to check out or not.
    Ohh yeah No i wasnt to hungery acculy. I didnt end up wating till about 8pm. And my mom pretty much forced me to eat. If i had been alone, i wouldnt have eaten i think. I guess after a certain point,you just forget about it, of course, my throat is raw, so eating is not to fun right now.
    Thanks for the info though i should ask my doctor about it the potassium.
    take care
    stacy


    Current Conditions:
    Endometriosis,1995
    IC,Feb 06
    IBS-C

    Prenecious Anemia
    Stomach Ulcers
    Duodenitis
    Acid Reflux
    Low Blood Sugar
    Hypothyroid
    Migrains

    Surgeries
    Laporoscopy-1995
    Gaul Bladder-1996
    Laporoscopy-2005
    colonoscopy2005
    cysto/hydro-2006
    cysto/hydro-2007

    endoscope-2007

    Meds:
    Elmiron,100mg 2am 2pm
    Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
    Elavil, 150 1pm
    Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
    Prilosec,20mg 1am 1pm
    Zoloft,100mg 1 pm
    Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
    Reglan, 10mg, 1 3xday with meals-for duonditis
    Ultram 50mg 1 every 4hrs as needed for pain
    Pyridim,100mg as needed
    Vicodin 5/500 as needed for pain
    Heating pad
    Ice Pack
    Arthritis Pain Equate brand 650mg usualy 2 at a time
    Stool softeners w/stimuli, 2am 2pm[/COLOR]

    Hopefuly no more gets added to the list!!!

    I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
    Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
    My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
    When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
    Dont forget to take care of you!
    Take care

    Comment


    • #3
      For Social Security Disability, according to their own ruling on IC, diagnosis by cysto/hydro or even PST is not necessary; a clinical diagnosis is acceptable (by a clinical diagnosis, they mean one based entirely on symptoms; for example I was diagnosed based only on my PUF test. That's one thing I know.

      I agree with Briza that it would be a good idea if you could look at both surgery reports side by side. Your bladder may not have been distended to the same size each time. Your medical records belong to you; all you have to do is ask the dr. who performed the test or else the hospital where it was done, and they'll give you copies (they can charge a copying fee, but that's it).

      Having said that, I have to admit that I really don't understand this. If you're still symptomatic for IC, it seems odd for her to tell you you don't have it. Maybe some of the others who go in for cysto/hydros often will be able to shed light on the variation in results.

      Meanwhile, I will be thinking of you, and hoping things work out.
      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


      • #4
        I'm sitting here wondering why you were told to not eat or drink after 8 pm the day before surgery, which is unusual to say the least. Usually the instruction is nothing after midnight if surgery is fairly early. If surgery is late in the day, clear liquids are usually allowed until 8 or 10 hours before surgery.

        I think it would be a good idea to get your medical records from both procedures, then you can compare the two. There are some people with IC who have been told after a hydro that they didn't have it --- I know of several people who were then diagnosed by a potassium sensitivity test.

        Warm 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.

        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


        • #5
          I am so soryy that you had a rough way to go.. sending you big hugs.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            I am so sorry you are suffering so badly. Hopefully some good rest and support from us will help you pull through this.

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7
              I am sorry that you had a bad experience with surgery. When I had my surgery I had several things done and could not eat anything but jello and chicken broth all day and nothing after midnight. I was told by my first gyno that I had prolapsed uterus and I went to someone who specialized in this and that is not what was even wrong but the specialized doctor knew what was wrong it was IC. But maybe you will get straighened out soon. Bamafan

              Comment


              • #8
                Ugh, how terrible!! Make sure to monitor your breathing over the next few days. Vomiting during surgery can be very dangerous; since you are on your back and unconscious, you can aspirate the vomit into your lungs, and this can cause pneumonia. It's unlikely because the anesthesiologist probably suctioned you out fast (which probably made your throat even worse, but may have saved your life), but just make sure you're not wheezing or short of breath
                ****
                Jen

                *Diagnosed with severe IC in 2004
                *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                **I am not a medical authority nor do I offer definitive medical advice. 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.

                Comment


                • #9
                  I have seen some people post here that their bladders looked different after some time on Elmiron....
                  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

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