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I really don't know how much more I can take

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  • I really don't know how much more I can take


    I was doing so good.. But then around the first of this year my bladder started shutting down. I could not get the urine out. Many trips to the ER crying because they just said it's "YOUR IC" and there is nothing we can do for you. They would place the foley cath and send me home. My PCP is very good at trying to help with pain management so I am on Fentynal patch 25mcg and Morphine for break through pain. But it is NOT WORKING!!! I had a cysto done this last tuesday and ever since then the pain has been even more unbareable. I just want to lay in bed and cry all the time. That day they "showed" me how to self cath myself so maybe I wouldnt need to go to the ER so often.. well see they may have showed me but they didnt make sure I got it down before I went home. So now i am doing trial by error.. more error than anything. My bladder is spaziming so bad I just lay in bed with my heating pad on my belly and between my legs. What kills me the most is I have a family to care for and I hardly have the energy to take care of myself let alone 3 other people. The pain meds are helping sometimes others it is just like taking a piece of candy ... NO HELP AT ALL!!! I want to give up. I am not sure i care anymore. How can I live like this. I need to pee so bad but I cant always get the cath right. And then from repeated trys I get blood just like i rubbed something wrong with it or whatever. But come on.. I dont need that too.. It feels like my kindneys and bladder are going to explode but they did all these tests and they are all empty but it doesnt feel that way at all.. I want to reach up inside and pull out everything.. Then on top of it all they found a cyst on my right overy when they were doing the tests so now i have to make sure that is nothing to.. when will this nightmare end.. I just need a few days.. NO PAIN.. NO CRYING.. NO DOCTORS.. Just to be atleast something close to normal. My family is very supportive. But I dont think they really understand how bad the pain is. How there is some mornings I wish I didnt have to wake up. How I go to sleep at night knowing i am going to wake up a million and one times hurting so bad.. IC SUCKS.. it has taken over my life. This is the worst it has been in 12 yrs and I want it to STOP!!! The pain... GOD PLEASE TAKE THE PAIN AWAY then because i am in so much pain oh yeah I throw up.. to bad I am not losing weight because of all the meds I am on.. and the lack of energy to do anything. However today I did get a few things done and now TOTALLY regretting doing ANYTHING at all.. I feel like I am in the forest screaming in pain and no one hears me. It feels like someone is sticking a big sword into my bladder and kidneys and twisting and pulling back out and repeating that over and over. It burns so bad.. When I do pee without using the cath I have to PUSH to get anything out. Then of course everything swells up and makes it all worse. I JUST WANNA GIVE UP!!!
    Sorry guys for my pitty party post.. but I had to post this somewhere my family wouldnt see it and where people understand.. even if no one reads this atleast I got it out.. Thanks if you do read it though..
    melinda


    With all the pain in the world comes love and hope.. For someday they will find the cures for all the pain we suffer and just take it all away and we can again be pain free and enjoy life.. and remember those who suffer the same pains and sorrows are usually the ones with the most understanding hearts
    Hugs and Loves
    Melinda


    Multiple health issues.. IC , Type 2 diabetic, Knee problems (7 surgeries), Fibromyalgia, Cystoscope with botox injections done on 11/17/11, Hystorectomy in 2005, Asthma, Migraines, High BP, High colestoral, pseudotumor cerebri and Depression..

  • #2
    *hugs* I'm going through a REALLY bad flare right now myself. And I don't know what I can do to make myself feel better. I have a job interview coming up next week and I feel like ****. I'm afraid I won't be able to look enthusiastic enough because I've been in so much pain and a slave to the toilet. I feel like I don't have a social life anymore and my family members don't understand the severity of my issues. I also have IBS and endometriosis. I woke up this morning in tears. I can't go on like this much longer.
    Diagnosed With:
    IC, IBS, Endometriosis

    Cystoscopy/Hydrodistention (2009, 2018)
    Colonoscopy (2010, 2017)
    Endoscopy/PillCam (2017)
    Diagnostic Laparoscopy (2011,2018)
    Appendectomy (2018)

    Comment


    • #3
      I'm so sorry you are having such a bad time. I'm currently in the hospital for an IC flare. when you go to the er will they not give you pain meds? or if you are in that much pain at least admit you until the flare calms down? That is the only thing that helps me...IV fluids and IV dilaudid. And usually within 2 or 3 days i'm out and feeling better.

      But I also know what it is like to go to the ER and have a doctor think you're making it all up. Just yesterday I had a new doctor in the ER ask me why I was there because I seemed to look pretty comfortable. I wanted to hit him in the face. So I finally got ahold of my primary care physician and he just direct admitted me. Is this an option for you?

      Hope you start feeling better IC sucks big time.
      I am happy to say that I am off all pain medication and currently take Neurontin and Uribel for my IC. I went to the Cleveland Clinic Chronic Pain Rehabilitation program and it saved my life!! I still get bad flare ups but it turns out I was on so many narcotics it was making my pain worse.

      Comment


      • #4
        To mylilegirls2,
        I'm so sorry you are in such pain. Please know that there are many folks on this forum that are in complete empathy with you and are sending you healing thoughts and hoping for some relief for you.

        Comment


        • #5
          I don't know or have answers for you. But I will pray for you and your family and hold you in the light. You and I and all of us here hate being in pain. Sending hope your way! Mary
          iCyJuNoMaRy

          Comment


          • #6
            Hi, melinda ~ I'm also so sorry you're going through so much. That feeling of not wanting to wake up must be so difficult. Don't ever feel like you've posted a "pity party" post! We've all got our bad time and like you said, we just need to get it out.

            Prayers that you're feeling better soon.
            Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

            11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
            8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
            8/2010 Surg gallbladder
            TREATMENTS (updated 4/15)
            IC Diet since 8/2009 (Able to vary 4/15)
            Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
            Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
            Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
            *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
            Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
            PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

            Comment


            • #7
              Another pointless trip to the ER

              Well I am in so much pain I just want to curl up in a ball and cry and cry.. I called the Urologist and they of course say.. GO TO THE ER!! So I do that..and guess what.. they did NOTHING.. NOTHING but take a cath to get urine out.. First I get there and they put me in the "who gives a crap about you room" and left me there alone for almost 2 hrs.. finally I couldnt take anymore the pain was so bad I thought I was gonna puke..so I went and tried to find out why there were not helping me..they said we are waiting for a urine sample.. I told them I CANT PEE (yelling by now).. so they cathed me and got their stupid sample they wanted.. no infection.. so they send me home.. still in severe pain. I tried to get them to admit me to help with the pain NO SUCH LUCK!!! I am done..
              All i can say is I HATE THIS HOSPITAL ... and i made that known...
              Thanks again for not giving a crap.. sometimes I wish I could just touch them for a second so they could feel what I am feeling.. I want to just say screw it ALL!!!


              With all the pain in the world comes love and hope.. For someday they will find the cures for all the pain we suffer and just take it all away and we can again be pain free and enjoy life.. and remember those who suffer the same pains and sorrows are usually the ones with the most understanding hearts
              Hugs and Loves
              Melinda


              Multiple health issues.. IC , Type 2 diabetic, Knee problems (7 surgeries), Fibromyalgia, Cystoscope with botox injections done on 11/17/11, Hystorectomy in 2005, Asthma, Migraines, High BP, High colestoral, pseudotumor cerebri and Depression..

              Comment


              • #8
                Please contact your doctor's office Monday and ask for more teaching so you can catheterize youself. It would certainly make your life much easier --- and avoid the feeling that you need to strain.

                Sometimes with IC it just feels like there is a lot of urine there when there might be just a dribble. Have you tried sitting in warm water to help you urinate?

                There are some medications that help with urination --- the ones that immediately come to my mind are cardura, flomax, and hytrin. You might ask your doctor about trying one of those.

                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


                • #9
                  Excellent advice from ICNDonna. I have to agree. Another point I'd like to make is that we ALL feel like giving up sometimes. Yall know what I'm talking about, it's 2:00 am and you're in the bathroom for the 15th time and you're pushing and nothing comes out. Your entire support system (except for ICN!) is asleep and you're feeling all alone in the world. You won't even let yourself cry out from the pain because you want to spare your family from your pain.
                  Please, PLEASE... when you reach those moments, don't make any decisions when you're in that red hot zone. Chances are you can rethink it in the morning. Even on the nights when the agony goes on all night, somehow when the sun comes up and the world starts moving around again, things can look a little better.
                  I just would hate to see any of you give up during one of those horribly vulnerable moments. Please remember you have IC sisters who are going through the same thing and would love to encourage you. I've been in that situation so many times over the years. Can't tell you the times I've leaned on people in ICN just to hear a friendly voice or read a post from someone who gets it.
                  I hope I can return the love and the favor by paying that forward. Maybe I an be that person for someone who feels like they can't stand another minute? One thing that has helped me is deep, intense prayer. Knowing God hasn't left me alone but is enduring with me helps. Also, thinking of your children helps. I know when I think of my daughter and granddaughters I become more empowered to fight.
                  Also, there is no shame at all in seeing a therapist. Someone to help you re-evaluate and teach you coping skills. I've benefitted greatly from that.
                  Please, Melinda, Trinity and others... don't give up. We're here! and there is always, always, ALWAYS hope and a reason to go on another day.
                  (formerly DonnaRenee1)


                  Diagnoses: IC, fibromyalgia, inflammatory arthritis, connective tissue disease, reynaud's, APS, (the lupus anticoagulant, also known as "sticky blood syndrome")
                  Meds: low molecular weight heparins, synthroid, methadone for pain, tizanidine, cymbalta, pyridium plus, urelle, phenergan for nausea, ambien, lisinopril, norvasc, plaqenuil for arthritis, and over the counter Prelief
                  Treatments: DMSO, occasional hydrodistentions, hot baths, strategically placed heating pads and ice packs, TENS unit, and everything from pity parties to prayer.
                  I have lots of support from my family. My husband and my parents are amazing! I have a wonderful daughter who also has IC, and she has given me 2 precious granddaughters. They are my heart and soul! Thank you God for my family!

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