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  • PLease Help, I am so upset!!!

    Hi Gals.
    Oh, I am so mad I cant stop crying. I just talked to the nurse and she talked to my doctor about the reaction I had with the instill on Friday and how it swelled me up and I could not pee afterwards. Well, she said the doctor said that I did not have an abnormal reaction at all and that if I want to get better she strongly suggests I keep doing the instills otherwise there is nothing left for me to do.

    I told the nurse that I disagree, and that not being able to pee was a definite reaction. I did tell her that I do feel better today and that the pain is less, but I do not want to go through what I went through with having to have that stuff cathed out as it caused me so much pain.

    I also suggested that maybe we omit a couple of the drugs, like perhaps the marcaine and biocarb and see if juts the steroid and the heperain would help. Well She said " OH NO, you have to have the full cocktail in order for it to work." I told her that with the marcaine, well that is just a numbing agent, and that wears off after a few hours, and has no lasting effects long term and that I thought that the steroid would still help with the inflammation would it not? And she did not know what to say, and asked me if I was a pharmacist since I kept asking about the drugs and wanted to omit a couple of them and she said that the doctor is the one who knows what is best basically. But she said she would tell her what I said and see what she says.

    I am so upset I cant stop crying. So basically she is saying that I have to do the instills or I am sh** out of luck. The nurse actually said that it was no big deal if I had to cath myself that it is so easy and that she has patients do it all the time. I told her that Yes, that may be, But I HAVE IC and it does hurt!!! ARRRRRRRGH I am so angry right now. She said maybe the doctor would get back to me, or she would try to later today. SHe had the nerve to tell me the doctor was pretty good about getting back to her pateints. I was thinking, Well that is funny, I have not had a chance ONCE to even talk to her. I always get stuck relaying my messages to the nurses.

    I dont what to do gals. I feel I am at a loss. Do I go ahead and do these instills again after what I went through? I just dont know what to do. Please any advice right now would be appreciated.
    Jen

  • #2
    I refuse to do instills. I just can't take being cathed. I can't believe that they told you it was your only option left. That's bull. So sorry you had a reaction to them. It makes me so angry when the nurses won't let me talk to the dr and think I don't know what I'm talking about. We may not be pharmasists by we do know by now what our bodies can handle and what works best for them. I've been told before too that cathing at home is not that bad and that a lot of people can do it, well guess what, I'm not one of them! Arg! Makes me so angry. Don't they realize that we're the ones that have to deal with this EVERYDAY?
    I hope your dr gets back to you soon. Maybe she'll have better advice for you. Feel better
    Leah

    Comment


    • #3
      HI Jen,
      I'm sooooo sorry for you are going through with this dr. Have you tried going to another dr.? See if a new one thinks you are SH** outta luck if you don't do the instill?? Maybe they will offer another solution? It sounds like your dr....like my new dr......has no bedside manner. What's happen to that trait in doctors anyway??? I sure do miss it!!
      I hope you get this figured out so you don't have to go through that awful pain again! Life is too short to be in that kind of pain more than once! Take care.....Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        I would agree with Roxie, Jen, you should look for a new doctor. I can't imagine she is the only dr that will treat you. And so many people here are on so many treatments obviuosly instills are not the only treatment or we would be talking about nothing but instills all day. My dr's don't ever call me back, I think that's the nature of the beast, they are just too busy to do so. But both my uro and gyn's office have a nurse line where you can call in and ask questions and they will either give you the answer or check with the doctor and get back to you later on that day.
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          Jen I'm so sorry. I don't think these doctors understand the torture of it for some people. They do think if one is doing good all will do good and that is not the case at all. Sounds like they are narrow minded about your situation and if they don't have compassion I would run as far as I could.

          If it is helping afterwards, I don't know what to tell you. I don't know why they can't give you something for the pain from the beginning that will help with it.

          Jen so sorry this isn't easy, hope there is something that can help to ease the pain.

          Sending hugs and more, Trishann

          Comment


          • #6
            Hey ladies.
            Thank you all for replying. I am at a a loss here. I just cant believe the doctor would tell the nurse to tell me that I did not have a reaction to any of the meds. I would think that me not being able to pee out that stuff was indeed a reaction. I did not get a normal pee stream back until later the next day. My stream was soooo thin because I was swollen inside I am sure.

            Yes, I believe that it did help some in the long run, likely the steroid helped because I do have less pain the last day or so. But I dont want to go through all that again and not being able to pee and having to cath myself since something in the instill made me not able to pee.

            I even tried to compromise and ask the nurse to tell the doctor that maybe we can leave out a couple of the meds used in the instill to see if that would help, but she said that they use all the meds in the cocktail in order for them to work. That is Bull Sh** if you ask me!! Why cant they work with me here. The nurse said that she would relay my message to the doc and maybe she would get back to me later today, but doubts that the doctor will want to go along with what I want.

            She made it seem like so what if I had to cath myself, people do it all the time. I was thinking, yeah, but do they all have IC and severe pain in their bladders and urethra's?? She did not have an answer for that.

            How could she say there is no other hope for me? I mean what about the TENS unti and the interstim??? WHat about pain meds for bad flare days? Though she does not believe in giving out pain meds at all. But I cant believe there is absolutely nothing else out there that will help me besides the instills. I mean what to people do who Cannot do the instills? Are they just out of luck? This does not seem right.

            I even asked the nurse if I could just have the steroid instilled in my bladder, and wouldn't that take down the inflammation since it is a steroid. She just got tongue tied and that is when she got a little mad and asked if I was a pharmacist. I was like , NO I am not, but I am using common sense and think that if I had a reaction to the instill, that we should not do it again or at least omit a couple of the meds and see which one may have caused me the reaction. I said that if I did the instill again a second time using all the same meds, what if I have a worse reaction? I told her that it is like if you are allergic to pennicillin, and you take it for the first time, you may get a couple hives. Well if you take it again a second time, the reaction may be alot worse and it may close off you throat and you wont be able to breathe right?? She did not like what I had to say. I was not even yelling or anything, I was just trying to talk to her.

            Thanks for listening ladies. I am so beat here and depressed. I will see IF she even calls me back and see what she says, though I am not holding my breathe. Thanks for listening.
            Jen

            Comment


            • #7
              Either the nurse is taking it on herself to be the doctor or she isn't telling the doctor the truth or you. If the doctor refuses to see you and talk to you about all of this then I say find another doctor as awful as that will be. I know it is hard finding a good one but it sounds like they do not really care what happens to you. Cathing is a big deal!! Bet she doesn't have to do it. They should at least let YOU decide what cocktail you want instilled. It is your bladder to begin with. I'm sorry you have to go through this. It seems we all do at one point. Some more then others. Have you checked here to see if there is a Uro listed where you are that handles IC?

              Comment


              • #8
                Jen, My dr. is one of the top IC dr.s in Houston and he has never once mentioned instills to me! I have severe IC so if anyone would be offered them.....it would be me. I really think you need to tell this dr. where she can go....and move on to another one. That's crazy that her nurse is on such a power trip that she needs to tell you what she "think's" the dr will say instead of letting the dr. speak for herself.
                I'm going to get a 2nd opinion about my condition.....I think you need to also.......if we don't stick up for ourselves....who will?? Take care girl......Roxie

                Double Spinal Cord Stimulator surgery 8/09
                Unsuccessful MiniArc sling surgery 12/07
                Dx'd Hypothyroid
                Dx'd Chronic Axonal Neuropathy & Myopathy
                June 2007
                Dx'd IC May 2006 (after suffering for 25+ yrs!)
                First Cysto 1979
                First Hydro 1981 (Many treatments since then!)
                Collagin"Durasphere" injections for urethra
                Gall bladder surgery Aug. 2004
                Gastric Bypass Dec. 2004
                Dx'd: Barrett's Esphogus July 2004
                Dx'd: Vaginal Atrophy 2005
                Bladder surgery 2000
                Dx'd: IBS 2000
                Hysterectomy (fibroids) 1999
                Laminectomy 1989
                Dx'd: Degerative Disk Disorder 1989

                For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment


                • #9
                  Before you decide to leave this doctor I would try your hardest to talk to the doctor and not rely on the nurse to communicate info between the two of you. I have an awful, awful time with the nurses at my uro's office. I've gone so far as to send a short letter to my doctor asking him to call rather than dealing with the nurse.

                  Maybe your doctor is being this unreasonable, but sometimes the office staff or nurses don't deliver messages accurately.
                  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


                  • #10
                    Kim is right. I would want to talk with the doctor before making a change.

                    kDonna
                    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


                    • #11
                      Hi Ladies.
                      Well the doctor called me back and said that she thinks I should continue the instills if I want to get better. I asked her about leaving out the marcaine and maybe the biocarb but she said that I would not be able to handle the pain without the marcaine, that I would be in alot of pain without it. She said she could cut it down to 25ccs and see if that made a differnence.

                      She is not willing to tweek the combo of meds though. She said this is the combo that will help. I told her my concerns of the instill swelling me and causing me not to be able to pee. She said that if that happens again, that I could cath myself until I could pee. (yeah, like it is that easy to do). She said that there is no other quick fix for this disease. I asked about the TENS unit and she I could go to PT and try that, but it does not help right away and takes months to work. She said it is up to me what I want to do as far as the instills, but she really has nothing else that she can do for me.

                      That is where I stand. Part of me thinks that the instill helped some since I had less pain on SUnday and Yesterday, but today the pain is coming back and the feeling like I have to pee all the time. She said I have to do the instills once a week for 6 weeks to see if it will help. I would have no problem with that if I knew I would be able to pee afterwards with no problem. I am at a loss. I am happy SHE at least called me back and not the nurse though. I still dont know what to do though.

                      I suppose my options are to either do the instill again and pray for a better outcome this time, or find another doctor and hope that that one will be better than this one. I just dont know. I mean what other treatments are out there really for this disease? It is becoming apparent that these doctors do not believe in giving pain meds out. Honestly I do not like to take ANY meds as I hate taking them as they always give me horrid side effects and they are bad for the body, but even I have my breaking point where I need pain relief! This is insane.

                      I just dont get it. When I had my wisdom teeth taken out, the surgeon was throwing all kinds of pain meds at me and I would not take them, as I dont like to take meds unless I just cant stand it. But here I am in awful pain and need something and cant get no help. How ironic is that? WHat the heck is wrong with this picture. Oh, I also asked her about how I feel I am not emptying my bladder all the time, and she said that actually nobodies bladder is ever really empty that the bladder is continuously filling up all the time, just that with IC, people feel it more if there is only a few ounces in the bladder.

                      Well, that is where I stand. I have no clue what I am going to do now. I feel like I am backed in the corner and have no choice here. I mean I can refuse to do the instills again, but then I am out of luck at least with her as she has nothing else up her sleeve to offer me as far as help. I have two days to decide whether or not to try the instill again, and I know I will be wracking my brain on what to do. This sucks. I either have to suffer with this and the pain and pray I dont get worse and can handle all this pain, or do the instill and have the chance that I wont be able to pee that stuff out and have to have it cathed out or cath it out myself and hope I will be able to pee normal not to long afterwards. WHat a great choice I have Huh?

                      Thanks for listening. Any advice or opinions are welcomed. Thanks gals.
                      Jen

                      Comment


                      • #12
                        Aw, Jen. What a crappy spot you are in. I hate being in a place where the answer isn't clear cut - it is so frustrating and it tends to make me really super anxious. I know next to nothing about instills so I am really no help at all. I hope in the next few days an answer becomes clearer for you. {{{HUGS}}}
                        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


                        • #13
                          Just a thought....what about using a cath with a cap on the end so that after the instill, you could lie down with your hips elevated and then, drain it out of the cath when it is time? That way, you would not have to be recathed if you couldnt go afterwards? Maybe my idea is dumb. I dont know. I am just trying to think of something to help.

                          Comment


                          • #14
                            Hi Amy.
                            Yeah, the only bad thing is that the nurses that do it, I am almost 100% certain they would not do that for me, as I would taking up a room, and they could not have that. It was a good thought though. But again, even with the cath left in, the meds still swelled me up and that is what caused me not to be able to pee. Even after they took out the meds last time, I had a hard time and my urine stream was like real thin and my pee could only trinkle out. I even felt swollen inside.
                            I think even with the cath left in there, which would also probabaly be very painful for me as well , if the meds caused that reaction, it likely would not make a differnece as far as that is concerned. Thanks for thinking of it though, hey, I am up for any ideas at this point. I just wish this doc was willing to work more with me and compromise some.
                            Jen

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