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  • Flare and not eating

    Hello everyone :-)

    As you probably have seen me post before since two months ago I have been flaring more than usual. I am having a hydrodistension done mid-July which I am sure will be very helpful. So I am praying this helps.

    At present, it seems everything I put in my mouth is causing me to flare. When I was diagnosed in December 2009 - I immediately started in on the diet and I have been pretty faithful. The food I eat is pretty bland without preservatives. However, lately - I have found myself eating less and less... sometimes only eating a few mouthfuls a day - which I know is not good.

    But that leads me to ask a couple of questions...
    1. Does anyone else find that the more carbs you eat the worse the flare becomes? (I know we are all different)
    2. I think I may have missed this somewhere along the way but is potatoes bad to eat when you have ic. I know that I cannot eat bananas... it drives my bladder crazy - and I think it has to do with potassium - that's why I wonder about potatoes - potatoes has potassium right?
    3. When you don't eat - do you ever feel like your bladder is worse?

    I am slowly going nuts. I don't want to eat anything at the moment because I end up in misery even with things that I could eat before that didn't bother me... So that leads me to my forth question.

    4. Have you found that you were able to eat a certain food for a while, and then all of a sudden you cannot eat it anymore because it makes you flare?

    I am finding at the moment that any little thing sets me off - ie - driving for more than 20 minutes, going over any bumps, a weather change - especially if it goes from hot to cold really quickly, sitting on hard surfaces, walking a certain way, bending a certain way... drinking water even at times. I am just a little frustrated, concerned, weary. I think that is part of my problem as well - I am tired from working long hours and I am beginning to not be able to go places, or having to go home to lie down, get people to lug my things around for me, etc. I try to push through and I am constantly on pain meds... anything to get through the day without having to show people my pain everywhere I go - however, i wish sometimes people would understand what kind of bladder problem I have. Some people think I just pee all the time - they don't realize all the pain that goes with it - spasms, belly button pain, feels like I have a basketball in my stomach... plus embarrassment... I wish somehow I could tell people - Look, I am unable to do everything that you expect of me because my bladder condition is a painful condition... has anybody ran in to that before. how do you share this with people you are working with, without having the "woe is me" vibe. I don't want people to pity me... but i want people to realize I cannot work hours upon hours, and lift items, and do many things without being in a ridiculous amount of pain or feeling extremely uncomfortable. Does that make sense?

    Thanks and blessings,
    Wizbe

    Current Meds:
    1 Elmiron 100mg 3x a day
    1 Cimetidine 300mg 2x a day
    4 Gabapentin 300mg 3x a day (3600mg)
    1 - 2 Atarax 25mg at bedtime
    1 baclofen 10mg 3x a day as needed
    200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
    2 belladonna and opium suppositories as needed for pain daily.
    Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

    I have tried but failed -
    lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
    [/I]

  • #2
    Potassium is essential to maintain health --- a deficiency can be extremely serious --- mine was very low at one point and they had to administer it via IV before I could safely have an anesthetic for surgery. I think some ICers feel it isn't okay for them because of the potassium sensitivity test being painful. However, potassium ingested and digested isn't the same as putting a potassium solution directly into the bladder. It can be difficult to get enough if you are sensitive to bananas --- and most of us have a problem with citrus.

    I depend a lot on potatoes to get enough potassium; they are also my comfort food.

    You do need to eat! I can't stress that strongly enough. And please do drink at least six cups of water every day --- if you feel tap water is irritating, try bottled spring water for a while.

    Sending warm hugs,
    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


    • #3
      To answer a some of your ?'s

      Yes I do better when I don't eat carbs, but I don't know that applies to everyone

      My uro told me a year ago that there is evedience that potatoes can be problemmatic, not to eat them even though they are on the allowed list.

      When I don't eat I sometimes get gassy and that will bother my bladder.

      As for how to get people to understand, I don't know you just have to take it person by person, after 30 years my family is finally getting it. I really try not to complain, just state I can't do that. If asked why I will give a short answer.

      What has helpped me lots is for years I hid all my symptoms execpt for the constant running to the bathroom, kind hard to hide that one, now I am past being able to do that it takes up too much of my energy. But it has helpped if people see the pain etc, they seem to get it better.

      Before I would never admit I needed help, or even go to the ER, I guess I felt it was sign of weekness, now I go and try not to be a marter.

      Just my expirences.

      Plus I have had a few frank discussion with my husband about my limitations and not to push me past what I can do.

      MG
      My are with you all. May you all find a way to peace and joy in your lives.

      Comment


      • #4
        PS I forgot to add I do not eat Bannas or potatoes. I had my potasium tested a couple of days ago, mine was fine but my sodium was low and I eat quite a bit of salt to keep my BP up.
        My are with you all. May you all find a way to peace and joy in your lives.

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