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I just got home from the hospital!

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  • I just got home from the hospital!

    This post is very looooooooong, sorry...

    I had a very successful hydro/cysto done on Jan. 8th. Uro said my bladder improved since August.
    On a scale of 1-10 (10 worst) my bladder was now at an 8. In August it was a 9 plus.
    After the procedure I went and stayed at my moms house for a couple of days to recoup. I felt great!

    I came home on Saturday. That afternoon my bladder started "talking" to me. By late afternoon it was "hollering" loud and clear to me that something was wrong. Once again, I tried not to complain to my family. But, of course they knew.

    On Monday 1/12 I called the uro's office, he couldn't see me until the next day. His collegues won't see me either because they don't believe in treating IC with opiods. grrrrrrrr

    Tuesday my uro said he didn't know what was wrong and gave me an instil of marcaine and a shot of vistaril. He saw some bacteria, but sent it for a culture. He was leaving out of town the following day but said he wanted me to see his nurse in the afternoon. She could give me another instill.

    Wednesday I woke in excrusiating pain. (actually, I didn't sleep at all) I called the nurse to see her sooner, but she was not available. They told me to go to initial care which is what we did.
    The init. care doc said I was dehydrated and gave me a bag of IV fluid (after a few pokes as my veins were not co-operating) and also a shot of demerol. This doctor called upstairs demaning that another uro see me. They all declined!

    That afternoon dh took me back to see my uro's nurse. No infection. She called my pc doctor so he could have me admitted to the hospital. He really drug his heals like he didn't want to admit me!Too much paperwork I guess! grrrrrrr

    We then spent 7 hours in the ER before being admitted. They wanted to see if re-hydrating me would take care of the problem...... it did NOT.

    Come to find out my pc doc gives all his hospital patients to another doctor called a "hospitalist".
    She called the clinic asking for a uro to take my case. They all refused because of my opiod use!!!!

    So, this poor woman was stuck with me.
    This poor doctor came in not knowing anything about IC. She had to learn quick. She also hit a few bumps in the road.

    She put me on a PCA machine with morphine, gave me MS Contin 60mg every 8 hours and two different LAXATIVES! .....BIG mistake!!

    The above made me worse, cramps, nausea and more dehydration! That whole day I was in worse shape.
    (oh, did I mention they sent me a glass of CRANBERRY juice with my breakfast!), no I didn't drink it! LOL

    She then called in an anesthesiologist to help with my pain control. He was more educated on IC than anyone else! He talked with me for 45 minutes because he was COMPASSIONET. His neighbor suffered from IC and had her bladder removed. He filled me in on her story. He is giving her my phone number so that we can talk. He also understood the real pain I was suffering. After giving me his phone number and address with instructions for me or family to call him for an update, help or just to chat I just cried with joy!

    He then spoke with my hospitalist doctor and instructed her to Rx me MS Contin 60mg every 12 hours and Morphine SL (dissolve under tongue, instant relief stuff) 10mg every HOUR if needed, along with all the other IC meds..

    When my dh had my Rx filled for large amounts of morphine, the Pharmacist questioned him on the one hour dosing! Obviously, he didn't know squat about IC pain!!!

    I'm now at home and will follow up with my uro this week. I still have pain but I am willing to take these drugs just to live.
    I'm trying not to feel guilty for being a pain!

    My plans are to head to Seattle for a second opinion and to get into a pain clinic.

    I just wanted to share my experience with you to let you know that there are some doctors who really do care!

    PS,,, my lunch at the hospital on friday was TOMATO soup!!! Are they trying to tell me something??????

  • #2
    grouphug grouphug grouphug
    Hang in there , There is hope.
    There is hope. Prayer works.

    Love, Debbie


    • #3
      Dandy~I found myself in an ICer's worse nightmare in August when I was admitted with Pancreatitis. Thank God that I took all of my bottles of meds with me. For my 5 day stay I was kept on my regular meds, no problem. The first day even my heavy doses weren't enough so my pain was treated with morphine. Lesson learned for me, TAKE THOSE PILL BOTTLES WITH YOU. When my daugher (an RN) tells me stories about Dr's it scares the crap out of me that these are the people who 'chose' to help people and if it weren't for the nurses, 1/2 of the people they are 'helping' would be dead banghead banghead banghead
      Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


      • #4
        Keeping you in my prayers, I hope things get better for you. Let us know how it goes.
        Take Care,
        Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain

        DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
        I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
        I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
        Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
        Elavil and Ditropan-severe bladder retention
        Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
        Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.


        • #5
          I hope my reply isn't too long. I also was in the ER and then admitted for severe pain of 3 days duration. Last December my husband went to visit his family in Delaware, I live in Georgia, and anyway the pain got so severe I feaked out. Ms Contin 10 mg was a joke and the percocets weren't helping. I tried my uro on Friday night and the doctor on call didn't return my call. I called on Sat night and luckly my urologist was on call. He had me double my meds, I did, and 30 minutes later I was pleading with him to do something to stop the pain. Anyway I went to the hospital on a miserable, cold and rainy Sat night and stayed for 3 days. Demerol,thank god for demerol. But can you belive I actually had break thru pain one night. I really don't think the nurses had any clue what ic is. I also was served fruit juice and tea and pineapple. I couldn't believe it. I was kept on the short stay floor and that probably wasn't a good idea. They wanted me out of there. My urologist said I shouldn't be using the hospital for pain control. Hello, excuse me, but why am I paying $350 a month(on Cobra)for health insurance if I can't use it? I wouldn't wish this pain on anyone and most people have never suffered such pain or understand what it's like. I wish more articles would be written, like the one in Self magazine, so the public would understand what IC is. I'm always having to explain myself. It hurts, my bladder hurts, that's why I went to the hospital and it waswhere I belonged. So I unerstand your agony and frustration with the doctor thing. My very best to you. Hang in there.

          M in Georgia