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I Am So Exhausted!!

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  • I Am So Exhausted!!

    Hi all,
    I just thought I would vent a bit.
    The thing is since my surgery last november, I have been so tired and exhausted all the time.
    I have no energy, very little oomph!! I cannot go shopping, do housework or play with my grandchildren.
    I have told the surgeon about this and the other post op problems I have got.
    He has been doing test's to find out what is wrong.
    Even travelling to the hospital in London is a effort and leave's me tired out.
    I suppose this could all be post op complications or family stuff that is going on at the moment.
    Either way I am determined to find out what all of this stuff is about and why I am like this.
    Everyone else on here(who has had bladder removal) seems to be well and healthy, so I can't understand why I am not.

    Thanks everyone for being here for me.

    love mum xxx
    I have had IC and PBS for 20+ years.
    Tried every medication I can think off.
    Had a Clam Cystoplasty with Mitrofanoff in November 2006.
    Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
    4th october 2007.

    Check out my profile on www.myspace.com/surreychick.
    if you want to know more about me.

  • #2
    Bless your heart....I wish I could help you, but as you know, this is just out of my element. But, I am thinking of you and hoping that things get better soon.

    Sending hugs your way,
    Amy

    Comment


    • #3
      Jill, it really take a very long time to get your energy back. YOu are still battling all sorts of prolems so that too factors in to things One thing that can contribute to the tiredness is vitamin B-12 deficiency. I have it and many other ostomates have it too. I get monthly shots of B-12 it makes HUGE difference in my life. As for being well and healthy I still have ongoing health issues and right afdter my surgery I had many infections and other stuff going on so I was in the hospital almost every other month. Thankfully after 21 years it now more like 4 times a year. You will get better, it is just going to take you longer. I think of you often,hang in there. Judith

      Comment


      • #4
        Jill,

        I had mine reconstructed in May. I am tired too. It took a very long time for me to get my energy back but there are days where just brushing my teeth is a major task. Everyone is so different with respect to recovery. If you are having lots of infections that is also a huge source of tiredness.

        Judith can they find a B-12 Deficiency through blood work?

        Kara
        Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

        "One hour at a time, this was NOT my American Dream but it has to work out somehow."

        I also have some journals of my journeys, past and some present at:
        http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

        Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

        Comment


        • #5
          Judith's post reminded me....I went my Rhematologist a few months ago. I see her for Fibro and Lupus. Anyway, I commented about how exhausted I was all the time. She didnt say much, (I figured that all patients with Fibro probobly say that, and that my extreme fatigue was probobly just normal for Fibro patients.) But, she did what I thought was routine bloodwork, but come to find out, she checked my levels of Vitamin D too. Good thing she did, b/c as it turned out, I was severely deficient in Vit D. She threw me on r/x Vit D of mega doses. She said that Vitamin D deficiency can cause extreme fatigue, but most people are never checked. She said of the patients she has checked who complained of fatigue, 80% of them had a Vit D deficency. Though I am still tired alot, it is NOTHING at all now, like it was then! (I was sleeping for 20 hrs at a time and STILL waking up exhausted!

          Anyway, I just thought I'd throw that out there as one more possibility. You might ask your Dr. to check it, just to be sure. They can also check your B12 levels at the same time.

          It may turn out that your body is so tired b/c you are still healing from surgery and all your energy is still going toward healing, but I thought I'd mention that about the Vitamin D, just in case. After all, you never know!

          I hope you get to feeling better soon and your energy returns!

          Hugs,
          Amy

          Comment


          • #6
            Thankyou!!

            Hi everyone,
            Thankyou for the very helpful replies.
            My doctor has taken some blood and will phone me when the results are back.
            I had a hospital visit yesterday, and the urodynamics have showed that my mitrofanoff is too short and my urethra has been causing me major leakage problems.
            I have another appointment to see the surgeon next wedsnesday to find out what will be done about it all.
            At least I know my neobladder is working ok.

            all the best xxx
            I have had IC and PBS for 20+ years.
            Tried every medication I can think off.
            Had a Clam Cystoplasty with Mitrofanoff in November 2006.
            Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
            4th october 2007.

            Check out my profile on www.myspace.com/surreychick.
            if you want to know more about me.

            Comment


            • #7
              Vitamin B-12 is checked with a blood test, it is a specific test, separate from the tests for anemia.
              Amy, funny you should mention Vitamin D- I was just checked this past weeek for it., I will find out when I see my doctor next week, but most likely it is fine since I did not get a call from them.
              Jill let us know what your blood work shows! Judith

              Comment


              • #8
                Hi Judith, Thankyou for the advice.
                I will let you know as long as they tell me.They don't always say what the results are until the next visit.
                I do know that the culture test they did last week was negaative, but because I had a video cystogram yesterday,the surgeon put me on antibiotics.
                He said he was not taking any chances with me getting another bladder infection.
                I have another appointment for next weds and will know then which op they are going to do.
                I don't think the bladder is coming out again, it seems to be working fine, it's everything else that is the problem.
                I won't ramble on anymore!!
                Don't want tolose my friends on here !!

                Are you keeping well ?
                I hope you are.
                all the best Jill xxx
                I have had IC and PBS for 20+ years.
                Tried every medication I can think off.
                Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                4th october 2007.

                Check out my profile on www.myspace.com/surreychick.
                if you want to know more about me.

                Comment

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