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  1. #1
    ICN Member Kara29's Avatar
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    Oct 2005
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    Central, NY
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    I almost died yesterday. Not a Joke. I am very sick. Bleeding internally somewhere.

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    I just wanted you all to know why I was gone all week. I was in the Hospital all week with some very negligent doctors. I started throwing up Monday Morning after my Husband went to work. I was so sick I couldn't move. I had to call 911 immedaitely. At some point in my Hospital stay A Doctor found out that I have severe Iron-Deficiency Anemia. I am bleeding somewhere that he didn't want to investigate. He threw 500mg of Dextran in my IV and I had Anaphalic Shock. This was yesterday. My Husband came immediately and my Mom was on the phone while it was happening. The Doctor and the nurses were laughing at me. They thought I was making it all up until the real symptoms started to show themselves. The Doctor won't admit that it happend.

    I am realling from this and very scared...........

    I see my primary care Monday and My Chronic Pelvic Pain Specialst next Wed.

    Please keep me in your heart and prayers while we find out what is happening.

    Love and Hugs,

    Kara
    Last edited by Kara29; 11-06-2008 at 12:54 PM. Reason: Title change........
    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.

  2. #2
    Support Volunteer leelee88's Avatar
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    Kara, I hate to hear this!! I wish the darn Drs would start listening to you! They can be so ignorant! Makes me SO mad!.. Do they know where the bleeding is coming from? I hope they can get this under control! Please know I am here for you if you need me..ANYTIME! You know how to reach me!!!! ((((hugs))))
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  3. #3
    ICN Member Kara29's Avatar
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    They don't know where the bleeding is coming from b/c they didn't do enough testing they just wanted me out of there and they are pushing me back to my primary doc as usual. My primary is freaking..........so is the rest of my family!

    As usual they didn't believe me when I went into shock. Luckily I was on the phone with my Mom and Allen came within 10 minutes.

    I am at home b/c no one seems to care in the medical field.

    I just have to see what happens on Monday and Wed.


    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.

  4. #4
    Support Volunteer leelee88's Avatar
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    Nov 2006
    Location
    Louisiana
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    Wow! That is insane!!! Ugh just do not have words to describe how that makes me feel! Just infuriates me! I can just imagine how Allen and your family is feeling right now!!
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  5. #5
    ICN Member
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    Dec 2004
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    6,503
    Kara that is horrid treatment you got!
    I wish there were something more that I could do, but you will be in my prayers. Many many prayers that SOME doctor figures out what is going on and that you are feeling better soon. Hang in there. Luv,Bri

  6. #6
    ICN Member Angeles's Avatar
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    Jan 2006
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    1,007
    Kara I hope you feel better soon....you will.... I'm praying for you.
    I'm sorry you were in hands of careless doctors/nurses. Please never go back there.
    There are good doctors somewhere ....out there, not many though unfortunately...

    I pray that you find good medical tratment and get well.

    Take care, you have a lot of friends here that are sending you healing thoughts.
    Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
    UTIs since mid 2004
    Recurrent yeast infections since mid 2005
    IC dx 3/2006
    V V dx 12/2006
    Other conditions: IBS, allergies, dry eyes.


    Current IC medications:
    Elavil (since 12/06) 10 mg;
    Cysta Q (since 5/07)
    Rephresh acid jel every 3 days
    D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
    Probiotics Femdophilus or other brands
    Gy-Na-Tren for yeast infections (started using it as needed since 2010)
    Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


    Past Meds and why I stopped them:
    Elmiron: March to September 2006: headaches
    Lyrica:2 weeks in 2006: headaches
    Cystoprotek: from Jan to April 2007: nausea

    Femcon Fe (2/07 to 10/07):caused spotting/bleeding
    BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


    "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

  7. #7
    ICN Member sue041's Avatar
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    Dec 2000
    Location
    Mifflintown, Pa.United States
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    304

    Question Kara

    Kara, I am so sorry what happened to you, but somehow I understand,my sister in law was not feeling well she went to the doctor and they said she lost some blood they gave her 4 pints of blood but could not find out where she was bleeding from. They did a colonosocpy and nothing showed, so they went down her throat and found that there were some blood vessel leaking blood. Now she has to go to a bigger hospital where they can correct this. That was a month ago and now she is bleeding and they must give her more blood. But she is diabetic, if that has anything to do with it. I will keep you in my prayers and please take care.
    God Be with you.
    Sue041
    Sue

  8. #8
    ICN Member
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    Jan 2002
    Location
    Memphis, TN
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    10,620
    Kara...I am so disturbed to learn that you were treated so poorly. I hope your PCP is able to get to the bottom of what is causing the bleeding.

    Sending you lots of for a speedy recovery and lots of (((hugs))) because I care about you very much. Please keep us informed about the goings on and let us know what your PCP says.
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/diet/


    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  9. #9
    ICN Member hdb1982's Avatar
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    Jul 2007
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    Almost Heaven West Virginia
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    Maybe I am over reacting but isn't bleeding of unkown origin considered a medical emergency? How can any doctor not take this seriously? They need to run every test and keep looking until they find the answer. I am so sorry Kara, you are such a strong brave person, I would have given up long ago if I had to endure half of what you have. What type of diagnostic testing did they do to look for the bleed? Is there another hospital you can go to? Sorry, I am asking a ton of questions. This just baffles me. You have my number, if you lost it PM me and I'll give it to you again. If you need anything, even just someone to listen as you cry, CALL ME. I don't have to work again until Sunday night, and that is only if my patient is out of the hospital. I got cancelled tonigh b/c she had been admited. I work 8PM-8AM Sun, Mon and Thurs. Other than that I am home. I'll even give you my cell number. I hope the bleeding stops and you recover quickly. I too hope your primary will find the answer.
    With Lots of Love and Wishes for Pain Free Days~Heather

    ~I was diagnosed with Interstitial Cystitis at the age of 23, 4 months after getting married. I also have severe Endometriosis, Adhesion Disease and Pelvic Floor Dysfunction. All of which were diagnosed AFTER being diagnosed with IC. Before IC my only health issues were a history of migraines since I was a child and a battle with cervical dysplasia. I had a LEEP in 2007 and have been clear of the cancerous cells since.~

    ~Please feel free to PM me if you have any questions, concerns or comments. Or if you just need a friend, someone to listen. I am almost always lurking around online somewhere. LOL~


  10. #10
    ICN Member mlzippy7's Avatar
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    Feb 2007
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    Wisconsin
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    Kara
    I am so sorry! I hope they figure things out soon!
    Current diagnosis
    Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
    Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

    Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
    Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
    Interstim implants--8 plus surgeries for them.
    I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at mlzippy7@yahoo.com.
    One day at a time

  11. #11
    ICN Member Claredale's Avatar
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    Kara, I am praying for you too. I am so sorry you are going through this. Thanks for letting us know so that we can pray that your doctor will figure out quickly what is going on and you will fill better.

    I am so sorry that you had to go through such a horrible experience like that. I just can't imagine anyone in a medical setting acting like that.

    Hugs, Tracey

  12. #12
    ICN Staff ICNDonna's Avatar
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    Allergic reactions can be extremely frightening. Please be sure you carry a card showing your allergies --- or a medical alert in case of extreme emergency.

    Warm hugs,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    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.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  13. #13
    ICN Member hdwadman's Avatar
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    Wow!

    I am very sorry that you've had to go through this! I'll be praying for you!

  14. #14
    ICN Member
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    I am so sorry this happened to you. You just cant seem to catch a break, can you? That was so rude of the medical staff to laugh at you like that! Believe me, I have had more than my share of horrible and insensitive Drs and nurses, but this is just about the worst treatment I have heard of!

    I was thinking one thing though that might (at least somewhat), help explain why they didnt believe you. I have gone into anaphalactic shock before too, and when I did, first started cramping really bad and I threw up. I also got really, really hot and it was very hard to breathe and when I did, it was a raspy, wheezing sound. My throat, face, tongue, throat and neck all swelled up. I also got hives on my throat, face, and parts of my torso. I felt like couldnt get any air from my nose or mouth Then, I lost consciousnes because my blood pressure dropped really low.

    I dont know if it was like that for you too or not, but since you mentioned talking to the Dr, your Mother, and husband., that might have been why they thought you were making it up for attention or something, (since you were able to talk.) Or, if you didnt have the other symptoms I did, then maybe your body just reacts differently to anaphalactic shock than mine or other people's. Or, you may have had a very severe allergic reaction that was worse than you have had before or maybe you had different symptoms this time than you did to other allergic reactions, so that made you think it was anaphalactic shock when maybe instead, it was a very bad allergic reaction. It is hard to say.

    But, whatever the case, they had no right to laugh at you and mock you that way, especially when you needed help so desparately! Even though they were so hateful and unprofessional, I hope they still gave you the shot quickly so you didnt have to lay there suffering a moment longer!

    There is nothing scarier than not being able to breathe! NOTHING! It's like that commercial states, "When you cant breathe, nothing else matters!"

    Even though it would have been best to be released after they found the bleeding, personally, I think you are better off at home than a place like that! I mean the stress alone from that would have sent me into a painful flare!

    About the bleeding, it may very well be a bleeding ulcer. I am sure your Primary Care will investigate that possiblity. Try keeping a food diary until you can get in to see him, (and the Gastro he will probobly refer you to see). Make notations on how you feel on an empty stomach and after eating and whether certain foods cause you abdominal pain or nausea. Also note other triggers such as stress and inadequate sleep and how these and other things factor into your pain. Also, note freq of bowel movements, whether they are painful. (Internal Hemmoroids that have ruptured due to hard stools (which are a freq problem with constapation), can also cause internal bleeding.

    I know hearing "internal bleeding" sounds bad, but there are alot of different things that can cause this such as the above examples. I feel confident your PCP and Gastro will get to the botttom of this and you will feeling better in no time!

    Meanwhile, keep us posted on how you are doing. I know it has been a rough week, but at least you are back home now and dont have to put up with that horrific treatement!

    Sending get well wishes and kind regards,
    Amaranthe
    Last edited by amaranthe; 11-07-2008 at 05:09 AM. Reason: typo

  15. #15
    ICN Member kuntrygurl78's Avatar
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    Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

    I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

    Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

    I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

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