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Had bladder out 4 days ago! yahoo!

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  • neohioic
    replied
    Re: Had bladder out 4 days ago! yahoo!

    I don't keep track anymore, but I know the rules, and I follow things very carefully. I do drink milk, and eat bananas. I don't eat many types of fruits though because of the risk. I don't eat yogurt. I don't eat anything spicy, aged, or risky at all. It seems like if I eat something on the bad list that the pain comes back fast. I really avoid artifical colors, and flavors. I avoid chocolate. I don't even eat one chocolate chip. I don't drink coffee, tea, alchohol, pop, tomato sauce. I don't eat anything on the no - no list.

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  • MelindaP
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Hi Neo,
    Are you keeping a food diary? I know within an hour or so if something bothers my bladder. It can be innocuous as the type of bread used for a sandwich. In the early part of the flair my bladder was bothered by carrots! A safe food! Also milk, but not so much now. So you have to be a real detective! I feel as my bladder is healing I can tolerate more now.

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  • neohioic
    replied
    Re: Had bladder out 4 days ago! yahoo!

    yes, I know. Today was really good, in the last 2 hours though it slowly devolved where I would consider myself not doing well now. I hate this medical condition. It is so very unpredictable. No rhyme or reason. Ahhhgghh! I hate this. I hate when I'm feeling good, then I"m starting to feel it more and I tell myself, its ok, this is only a little, and then eventually there is no denying I'm not happy with the way I"m feeling. Owell, I gotta keep trying to get better. I am getting more good days.

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  • ICNDonna
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Originally posted by neohioic View Post
    I know, 4 good days is something to be proud of. Today my pain levels are very low. I"ve had some awareness discomfort though. I find that I just don't bounce back from being in pain. Even with a relatively good day today, I almost feel like I'm walking on thin ice or like I'm going to flynch thinking I'm going to get hit or something. I'm depressed. It takes some really feeling good to not be depressed. I"m only human after all. You don't have a bad day and then just bounce back mentally after feeling that terrible bladder pain. For me, it is a discomfort. But it is terrible, and I can't live with it. It is not like regular pain.
    It sounds like you are showing some improvement --- I know that when I was first being diagnosed, and even for a while after diagnosis --- I was extremely upset. It took me a long time to teach myself that I needed to look at the good days, and even longer to get over the fear about tomorrow. Now I have many more good days than bad ones, and I am thankful for any feel good day.


    Donna

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  • neohioic
    replied
    Re: Had bladder out 4 days ago! yahoo!

    I know, 4 good days is something to be proud of. Today my pain levels are very low. I"ve had some awareness discomfort though. I find that I just don't bounce back from being in pain. Even with a relatively good day today, I almost feel like I'm walking on thin ice or like I'm going to flynch thinking I'm going to get hit or something. I'm depressed. It takes some really feeling good to not be depressed. I"m only human after all. You don't have a bad day and then just bounce back mentally after feeling that terrible bladder pain. For me, it is a discomfort. But it is terrible, and I can't live with it. It is not like regular pain.

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  • ICNDonna
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Originally posted by neohioic View Post
    I had 4 real good days in a row. I was taking prelief before some dinner meals even though they were safe. I started the day doing great. I thought it was going to be the fifth day in a row doing great. I had a couple really simple donuts at work today and the low but bad pain that I can't live with is back. I had a couple donuts on 2 days ago and I handled them fine. The ones I had today weren't the glazed style with the white flower that I had previously with no problems. These were 'cake' donuts with just sugar and cinnamon. These 'cake' donuts were really simple looking like a brown color and the inside was like a yellowish cake consistency. So I've been in various states of pain all today. The kind of pain I can't live with. Anyway, I'm back to square one. Well, maybe not square one, after all I am working and surviving but I can't live with this pain. It is too bad. The previous 4 days I was thinking to myself, I don't want my bladder removed, I"m cured. But with the pain like this again today I'm feeling like nothing has changed.
    Sometimes it's hard to find what's in a commercial product. I bought one of those pans that you can use to bake donuts in the oven --- I prefer to not eat commercially baked goods if I can avoid them.

    You just had some good days, which is a "win" for you --- and you will have more.


    Donna

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  • MelindaP
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Hi Neo,
    It’s hard to figure out triggers but the good news is you had 4 good days in a row. That’s huge progress! I have to constantly remind myself with this disease, it’s 2 steps forward, 1 step back. It’s a very gradual healing process. Sounds like you are on your way!

    Leave a comment:


  • rach27
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Hi Neo,

    I'm sorry your 4 day streak was ruined, that is the worst! I always get disheartened when that happens, but I try to remind myself I can get there again, and you can too!

    I don't know if sugar is something you eat often, but unfortunately for me it is officially off the table now I've noticed that when I "fall off the sugar wagon" my pain slowly starts to come back. Not like if I were to eat a bladder irritating food (for me that pain hits the next day like clockwork), but it's almost like it has to build up in my system. I'm assuming this is because sugar causes inflammation in the body. I've also heard cinnamon can be an irritant?

    Just thought I would share! I hope you get relief again soon!

    Leave a comment:


  • neohioic
    replied
    Re: Had bladder out 4 days ago! yahoo!

    I had 4 real good days in a row. I was taking prelief before some dinner meals even though they were safe. I started the day doing great. I thought it was going to be the fifth day in a row doing great. I had a couple really simple donuts at work today and the low but bad pain that I can't live with is back. I had a couple donuts on 2 days ago and I handled them fine. The ones I had today weren't the glazed style with the white flower that I had previously with no problems. These were 'cake' donuts with just sugar and cinnamon. These 'cake' donuts were really simple looking like a brown color and the inside was like a yellowish cake consistency. So I've been in various states of pain all today. The kind of pain I can't live with. Anyway, I'm back to square one. Well, maybe not square one, after all I am working and surviving but I can't live with this pain. It is too bad. The previous 4 days I was thinking to myself, I don't want my bladder removed, I"m cured. But with the pain like this again today I'm feeling like nothing has changed.

    Leave a comment:


  • ICNDonna
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Originally posted by neohioic View Post
    You know, when I get an instillation, things are always different. Sometimes while the instillation is in, I get relief. Sometimes when the instillation is in if feels numb but yet irritated. Not as bad as my regular pain but still not ideal. Then usually the day following an instillation things get really good. Then even by the evening of the day following an instillation it isn't as good. Then the 2nd day after an instillation isn't as good. Then maybe the 3rd day is even better than the 1st day. So getting an instillation isn't just a "fix all". I'm on 12 days since my last instillation and I've had 2 great days in the row right now!!! I'm thinking I want to get instillations on a regular basis. It seems like I'm improving at times. I just gotta keep hanging in there. I don't think daily instillations would be good for me. Even weekly is too often. I did weekly for a while, and it helped at the time but that was too often. I want things to settle down, trying to get this illness under control is just difficult. If I can turn these 2 days into a week of feeling good, then maybe I can keep it going. Maybe I can get to where these nerves giving constant pain calm down. I think the nerves are kind of like stuck in the 'ON' position. Getting them to turn off is difficult.
    It sounds like you may be making slow progress --- and once you learn how frequently you need instillations, you may have even more good days.

    Keep us posted.

    Donna

    Leave a comment:


  • neohioic
    replied
    Re: Had bladder out 4 days ago! yahoo!

    You know, when I get an instillation, things are always different. Sometimes while the instillation is in, I get relief. Sometimes when the instillation is in if feels numb but yet irritated. Not as bad as my regular pain but still not ideal. Then usually the day following an instillation things get really good. Then even by the evening of the day following an instillation it isn't as good. Then the 2nd day after an instillation isn't as good. Then maybe the 3rd day is even better than the 1st day. So getting an instillation isn't just a "fix all". I'm on 12 days since my last instillation and I've had 2 great days in the row right now!!! I'm thinking I want to get instillations on a regular basis. It seems like I'm improving at times. I just gotta keep hanging in there. I don't think daily instillations would be good for me. Even weekly is too often. I did weekly for a while, and it helped at the time but that was too often. I want things to settle down, trying to get this illness under control is just difficult. If I can turn these 2 days into a week of feeling good, then maybe I can keep it going. Maybe I can get to where these nerves giving constant pain calm down. I think the nerves are kind of like stuck in the 'ON' position. Getting them to turn off is difficult.

    Leave a comment:


  • ICNDonna
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Originally posted by neohioic View Post
    I"m really hoping if I eventually choose to have my bladder removed that I only have the bladder removed and nothing else. I"m a man, and if possible I would like to keep the prostate and other organs/lymphnodes except for the bladder so maybe I would be lucky and still have my sexual function. I only have pain that to me feels like it is in my bladder. When I get an instillation the pain goes away completely.
    How long does the pain relief from an instillation last? I'm wondering if you might be a good candidate for self instillations? That way you could do an instillation whenever the pain hits --- or if you know how long the treatment will last, you could do one before you have pain. I know it might be a little more difficult for a man, but some do manage to do catheterizations --- it might be worth considering?

    Sending warm healing thoughts,
    Donna

    Leave a comment:


  • funngamesjoanie
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Hi Neo,
    I am happy to hear that your pain is only in your bladder, and that the installations are effective- mine never helped, but my pain was all at the urethra and outside. Sounds like if it came to that, you would only lose your bladder and keep everything else....Good luck to you!!!

    Leave a comment:


  • neohioic
    replied
    Re: Had bladder out 4 days ago! yahoo!

    I"m really hoping if I eventually choose to have my bladder removed that I only have the bladder removed and nothing else. I"m a man, and if possible I would like to keep the prostate and other organs/lymphnodes except for the bladder so maybe I would be lucky and still have my sexual function. I only have pain that to me feels like it is in my bladder. When I get an instillation the pain goes away completely.

    Leave a comment:


  • funngamesjoanie
    replied
    Re: Had bladder out 4 days ago! yahoo!

    Hi, Trey, I don't quite understand what your surgeon did.... He only removed " the top half" of what? Your urethra?

    Leave a comment:

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