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Food Sensitivity & bladder removal

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  • sophee 0168
    replied
    Re: Food Sensitivity & bladder removal

    How is Bella doing? I came across this post and wanted to know if things got better for her food wise. Is she still experiencing pain when eating foods she normally couldn't eat or have things gotten better?

    Hugs,
    Ash

    Leave a comment:


  • ICB
    replied
    Hello Carlos:

    My prayers are with you both!

    Several things come to mind that may help; discuss with her healthcare providers (not just the doctor that performed the surgery, but all her healthcare providers, even if you have to look for a second opinion).

    1. She could be allergic to some of these foods and that may be causing her reactions; an allergist may help her determine if this is a possibility.

    2. Mast cells may be triggered by these foods and cause inflammation in the area; would the doctor prescribe an antihistamine (Atarax, Vistaril, Zyrtec, or a similar drug) if he/she believes this is part of the problem.

    3. The nerve endings may still be responding to the same things that would set off her flares; would Lyrica, Neurontin, Topamax, Elavil, Cymbalta, or a similar drug be appropriate?

    Best wishes, ICB

    Leave a comment:


  • Pain
    replied
    oh my gosh

    Originally posted by bellaluna05
    Lara suffered for 13 years with severe IC before having her bladder ruptured during a cystoscopy last year.
    Oh my gosh Carlos...my heart goes out to her! This is the "other side" of what can happy during a cystoscopy/distention.

    Though mine did not fully rupture, as a young woman due to a doctor's ignorance, I was unable to urinate at all due to a huge blood clot and almost died of uremic poisoning several hours later (and after a three hour car trip to a hospital) when my bladder wall gave way in spots and urine leaked into my abdomen. According to them I was "this close" to a total rupture all because an ignorant doctor refused to cath me (because my urethra was/is severaly damaged and very difficult to cath) and thought all the blood I was passing before "must have been coming from that other hole".

    Sorry..didn't mean to take this over but I refuse to have a cysto/distension due to the fact that my entire bladder was so badly compromised then that if I did have it done now, I would likely end up like your fiance.

    My thoughts and prayers go out to her. And you are a wonderful fiance for being there for her!

    Leave a comment:


  • prbetty
    replied
    Dear Carlos:

    I forwarded your posting to Mr. Alan Kligerman, AkPharma's CEO, and the developer of Prelief. Please see his response below:

    We do not have any suggestions since the bladder has been removed. The neural connections are still there transmitting pain, even though that pain at this point may be "phantom." We wish to make no comment on the physicians' promises that the removal of the bladder and urethra would result in a painfree life or that she would be able to eat anything she wanted.

    Prelief is AkPharma's brand name for calcium glycerophosphate which has a number of important uses relating to interdiction of acidic food-caused symptoms. Prelief binds acids and as a result interdicts many symptoms food acids can cause, including pain and urgency. Given that Prelief is not a drug, there are no direct statements that Prelief can make regarding the relief of pain, as such, in interstitial cystitis. We can, however, point out that certain "vegetables" (tomato is actually a fruit) such as tomatoes, and most fruits, such as oranges, are serious offenders to IC sufferers. They are extremely acidic and while that acid is not transmitted, as such, to the bladder -or what remains in place of the bladder- , the fact is that use of Prelief with these foods appears to interdict the foods' effect on bladder pain. We suggest 2 or 3 tablets three times per day, at mealtimes; at least two or three with each tomato additional, and 2 or 3 tablets additional with each 4 oz. of tomato sauce.

    We are truly sorry that your fiancee is having such problems.

    Best wishes,

    Alan E. Kligerman
    Chief Executive Officer
    AkPharma Inc.
    P O Box 111
    Pleasantville, NJ 08232
    Phone 609/645-5100 x304
    Fax 609/485-0423
    [email protected]

    Leave a comment:


  • bellaluna05
    started a topic Food Sensitivity & bladder removal

    Food Sensitivity & bladder removal

    Hi,

    My fiance Lara (bellaluna) is a frequent visitor to this site. She is currently recovering from bladder and urethral removal and I now freqnet the boards looking for help for her post op condition/symptoms.

    Lara suffered for 13 years with severe IC before having her bladder ruptured during a cystoscopy last year. She had no choice but to have her bladder and urethra removed to deal with her IC. One of the things she was looking forward to was being able to eat anything she wanted. Her doctors promised her that she would be able to eat anything she wanted and she would not feel pain. Well, that has not been the case.

    Tonight, she tried tomatoes, her favorite for the first time and had severe pain, where her bladder and urethra used to be. The pain is severe. She has also experienced pain with a lot of other foods as well. "You will be able to eat anything pain free" is just not happening for her. It has been one month and one week since her surgery.

    I asked her about prelief and she told me she tried it before and it didn't work for her.

    Does anyone have any thoughts or suggestions?

    Thank You,

    Carlos
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