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My EC Story,

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  • Gabi
    replied
    Judith,

    Thanks much for the information. I am going to research the procedure more thoroughly and will certainly private message you back if I have additional questions. Thanks for the offer.

    Take care,

    Gabi

    p.s. how do you do a private message?

    Leave a comment:


  • Judith
    replied
    Gabi, in answer to your questions: you do not have to have an external pouch first. The reason I had one was because it was 16 years ago and they had not perfected it yet, so I waited till they got all the kinks out of the surgery and had better success rates. I can do anything with my internal pouch- I do keep it coevered with gauze and tape, but not in the shower or when I have a bath. No- one knows I have one unless I choose to tell them and even then they don't believe me cause you can't see it, that is unless I was to take off my clothes!If you want you can private message me with any more questions. I hope this information has helped. Judith

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  • Cricket
    replied
    Patty, be extremely cautious when considering cystectomy. I know of three EC patients, who I met through the ICN, who thought that cystectomy would end the pain. It didn't. Instead, eosinophils attacked their kidneys and intestines and all three have died.

    If you've had deep bladder biopsies and the results showed an extremely high number of eosinophils deep in the bladder muscle (not just in the urine or the bladder lining), I would strongly urge you to consider cystectomy only as a very last resort.

    I keep you in my prayers.

    With Love,
    Cricket

    Leave a comment:


  • Gabi
    replied
    Judith,

    I hope hope hope you see this and respond. I had no idea there was such a thing as an "internal" bladder bag. Do you have to have the external one first, for a time, and then switch to an internal one? Or, can you just get an internal one to start. Were there disadvantages to the internal one which is why you chose to have an external one first? Can you do normal activities with an internal bag, particularly, swim without causing problems or have anyone know? I have sooo many questions about it but I won't bother you with more. I just really pray that you read this and answer me because it could be the answer to my prayers.

    Thank you in advance, Gabi

    Leave a comment:


  • Judith
    replied
    Patty, when one is first told that they need to have their bladder removed it is very scary. I know because I was told 16 years ago I needed the surgery.Well,I am happy to say that since I had my bladder out 16 years ago my life has been so much better. I no longer have worry about where the bathroom is, I can sleep through the night, I no longer have pain. I originally wore an external pouch and then 9 years ago had it switched to an internal one. I live a normal life and no one knows I dont have a bladder unless I choose to tell them. If you need the surgery it is not the end of the world, rather a new beginning, a second chance at a happier life.

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  • JOJO
    replied
    Patty
    Hi
    Im so sorry to hear all this. Its a shame you had to go thru all that. But we are all hear for you. I talked to you one nite in chatroom, I was the one telling you I think there is someone else on the boards with this. I wish you all the best.Sending you a bunch of healing hugs-JOJO

    Leave a comment:


  • Teri
    replied
    Thanks for sharing your story Patty. For me, once I found this site, the disease of IC wasn't quite as scarey for me. I have made alot of wonderful friends here and feel that I have been blessed in a way that others who are 'normal' can't be. I pray for days of comfort and tons of new friends to come your way~

    Leave a comment:


  • sue041
    replied
    Hi Patty, I have IC and I also have a pain pump implanted inside of me that puts morphine right into the nerves that lead to the bladder. I now have a bladder infection, I took cipro for three days and it is still there and a little worse. My family doctor did a culture and she will call me in the morning and tell me if I should try another antibotic or what to do next. I called my pain doctor, and his nurse asked me in the weeks before I got this bladder infection did I have trouble peeing and I said yes, and she said it is the backed up urine that made the bladder infection. Now what do you think they will do about that?? I sure hope they don't have to catherize me with a bag or something. I have learned more of this site than anything else. I pray that you soon get to feeling better and pray for a miracle for all IC people.....

    Leave a comment:


  • Patty
    started a topic My EC Story,

    My EC Story,

    I hope my story can help someone,with similar problems.
    I was diagnosed with Eosinophilic Cystitis three years ago.My story,starts four years ago.I started having massive stomach pains,similar to labor pains.I went to numerous emergency rooms,and they couldn't figure out what was happening.I ended up with a urethra prolapse.I couldn't urinate,so my urine was backing up inside me.It the doc's a year to diagnose this.I went through surgery,they fixed the urethra.But they put a latex cath in me.While in recovery,I told the nurse that I really hurt hurt down below.She looked and told me that i had blisters,but she would put some ointment on me and send some to my room.Right after that,while i was still in the recovery room,I had two cardiac arrests.They then said i was allergic to latex.But i still had a lot of bleeding and pain in my bladder.They did a bunch of tests,and after a month,they told me that i have Eosinophilic Cystitis.They also said were sorry but no one knows to much about this disease.And no one did.They told me that my bladder would continue to shrink,and that sooner or later,i would lose my bladder.I was horrified,how can i live without my bladder.They explained that people can live without a bladder,and he told me about the surgery and the bag and all,that they would do if they had to.So I have been fighting my disease and to keep my bladder for three years now.I hope someone can my story,and hopefully not have to go through,what i did.My love to all of you,and thanks for being there for me!!!
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