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Better tell my story, I guess

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  • Better tell my story, I guess

    Well, after posting several messages and making uncalled for comments (LOL) I had better tell my story.

    What brought me to this group was the apparent after-effects of a severe UTI I had about 3 months ago. After two courses of antibiotics the infection was gone but I was left with a lot of irritating residual issues: pain so bad that I couldn't walk or sit, bladder spasms, frequency and burning, extreme tiredness (getting up to pee 6 or 7 times a night will do that!) and feeling utterly depressed and hopeless. Anyway, every time I researched my symptoms on the Internet I kept getting the result "interstitial cystitis" but of course I didn't want to accept that, so I went into denial. I decided I must still have some infection, despite negative urine tests and urine that looked and smelled normal (sorry for the TMI). So I spent LOTS of money on various products: D-mannose, homeopathic medicine, uva ursi, AZO, Cystex, Uristat, etc, etc.

    Then I read about Prelief, so ordered some of that. At the same time I decided to try cutting out a few acidic things - tea, coffee, lemonade, oranges, tomatoes (tried to give up chocolate but just couldn't!). After a week of taking Prelief three times a day, I can honestly say that I'm 90% better than I was before I started using it, and I'm only having to get up to use the bathroom once a night (woohoo!) plus there's a bonus - my IBS has calmed down too.

    I've also discovered that if I drink lots of water to prevent my urine becoming too concentrated, then it doesn't hurt or burn when I pee. Also, when I start to have any spasms they stop if I take a Tylenol PM (which contains antihistamine) or any other kind of antihistamine.

    This just about sealed the diagnosis for me, and then I remembered what I had been told 20 years ago. After years of bouts of cystits - three or four times a year minimum - my doctor got fed up with me and admitted me to hospital for tests. I had one of those kidney x-rays where dye is injected, also an ultrasound of my bladder at various stages of fullness and after peeing, and then I was anaesthetised while they dilated my urethra and did a cystoscopy - oh boy, that was agony for a couple of days afterwards. Anyway, I was told that I had one deformed kidney plus the ureter on that side was twisted, and that my bladder appeared mildly irritated but no suggestion was made as to why that might be. The doctor told me most of my problems were due to the kidney/ureter deformity and that I just had to keep drinking lots of water to flush it out.

    Over the next 20 years I had two or three UTIs but nothing that seemed to linger on. I was taking LOTS of cranberry pills and credited that with keeping me free of UTIs. So this last one really hit me like a ton of bricks. Antibiotics had always worked quickly to clear them up, so I just couldn't understand why that was no longer the case.

    As a visitor to the US, I don't have insurance for the tests that are needed to confirm this diagnosis but I'm going to assume that it is IC because that's what it seems to be - if it quacks it's a duck, right?

    I have a lot of other health problems that are mostly autoimmune and allergy related: Migraines, asthma, eczema, Hashimoto's (thyroid doesn't work at all), Von Willebrand's (type of hemaphilia), IBS, food intolerances, drug allergies, rosacea, polyneuritis, eustachian tube dysfunction, sciatica (from ruptured L5-S1 disc) and the urinary tract problems. I've also had a hysterectomy because of fibroids and abnormal pap smear, and I had my gall bladder removed when I was 20 years old. I've also had four late miscarriages due to severe Rh incompatibility.

    Okay, that sounds like I'm a hypochondriac! But really, all I wish for is to have good quality of life and to be the kind of wife my husband deserves. Being sick takes away something from our relationship, so I'm hoping I can get this bladder thing under control because I'm managing to cope with the other stuff okay

    I hope everybody in this group has big improvements in their health - wouldn't it be wonderful?


    ~jiriji~
    (Aboriginal word for "owl" - I'm Australian and I love owls)
    I'm sick of being sick. Fed up with all this autoimmunity/allergies stuff: migraines, eustachian tube dysfunction, asthma, peripheral neuropathy with polyneuritis, Raynaud's disease, acne rosacea, Hashimoto's thyroiditis, IBS (diarrhea type), IC, one deformed kidney, Von Willebrand Disease (a bleeding disorder), drug allergies, food intolerances, life intolerance! And besides all that, i'm missing my tonsils, my gallbladder, my uterus and ovaries... and probably a gazillion brain cells

  • #2
    Wow, you have quite a long list of problems. I feel for you. I hope your able to get some help for the IC. I know how you are feeling. I found out I have IC just a little over a year. Its very over welhing to deal with so many thing plus the IC. I have some other things wrong also. But I dont think they are as bad as what your going threw.
    Im glad to hear though that the over the counter meds can make a big differance for you. IF you havent been able to get into a urologist, I really recomend to go. The only things i know of what will help heal the bladder lining is the medication called Elmiron. Im sure you have read about it sever times. It takes a while to start healing, but it does improve things a great deal.
    Take care of your self.
    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
      Thank you, Stacy, and i hope you are doing well too.

      I'm just hoping to keep things under control until i return to Australia and can afford to see a urologist. In the meantime i'm learning how not to aggravate things. Yesterday was very warm and humid here (Oklahoma City) and i wasn't able to drink enough to keep up with what i was sweating out, so by the time i went to bed last night i was in agony. But every time i woke during the night i made sure to drink some water and this morning i'm a lot better.

      This sure is a learning experience!


      ~jiriji~
      I'm sick of being sick. Fed up with all this autoimmunity/allergies stuff: migraines, eustachian tube dysfunction, asthma, peripheral neuropathy with polyneuritis, Raynaud's disease, acne rosacea, Hashimoto's thyroiditis, IBS (diarrhea type), IC, one deformed kidney, Von Willebrand Disease (a bleeding disorder), drug allergies, food intolerances, life intolerance! And besides all that, i'm missing my tonsils, my gallbladder, my uterus and ovaries... and probably a gazillion brain cells

      Comment


      • #4
        It sounds like you may be one who is really helped by diet. I suggest you try putting yourself on the IC diet --- you'll find details in the Patient Handbook at http://www.ic-network.com/handbook --- you'll also find lots of other good information there.

        Warm healing thoughts,
        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
          Thank you, Donna, i've been trying to follow the IC diet for a couple of weeks now. I've been able to give up all drinks (except water, of course) and most acidic foods. The latest thing i've "discovered" that may be a problem for me is processed sliced cheddar cheese.

          On a happy note.. there are some nice people out there! A friend bought us both some takeaway food for lunch the other day. She got me a burger that had nothing on it but meat, and also a banana shake. She thought she was doing a good thing by not getting me a caffeine drink. I didn't have the heart to tell her that the potassium in bananas could be a problem for me. Luckily the after-effects weren't too intolerable.

          This is a wonderful group... such kind and caring people with lots of good advice!

          Always grateful,

          ~jiriji~
          I'm sick of being sick. Fed up with all this autoimmunity/allergies stuff: migraines, eustachian tube dysfunction, asthma, peripheral neuropathy with polyneuritis, Raynaud's disease, acne rosacea, Hashimoto's thyroiditis, IBS (diarrhea type), IC, one deformed kidney, Von Willebrand Disease (a bleeding disorder), drug allergies, food intolerances, life intolerance! And besides all that, i'm missing my tonsils, my gallbladder, my uterus and ovaries... and probably a gazillion brain cells

          Comment

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