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Bladderella...how are you?

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  • earthlady
    replied
    Re: Bladderella...how are you?

    I guess you wouldn't really know if it was just one or the combination of all of them. It looks like a good combination though. I take a few of the ingredients in Cystoprotek separately and also the Desert Harvest Aloe, along hydroxyzine when needed for allergies and I found for me it is a very good combination.

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  • Bladderella
    replied
    Re: Bladderella...how are you?

    Originally posted by earthlady View Post
    Wow- That's great to hear that your bladder surface looks so much better after taking Cystoprotek. Have you noticed any decrease in pain or irritation at all since you started the Cystoprotek?
    If I was only taking CystoProtek that would be an easy question to answer. CystoProtek is only part of my IC-fightin' arsenal. In addition to strictly following the IC diet ( I do NOT cheat), I take CystoProtek, Desert Harvest Aloe Vera, hydroxyzine, d-Mannose, glucosamine MSM, and Renew Life Probiotics. There is no way for me to really know which of those is responsible for lessening pain, irritation and inflammation. Probably all of it has helped in one way or another.
    Last edited by Bladderella; 12-20-2014, 04:51 AM.

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  • earthlady
    replied
    Re: Bladderella...how are you?

    Wow- That's great to hear that your bladder surface looks so much better after taking Cystoprotek. Have you noticed any decrease in pain or irritation at all since you started the Cystoprotek?

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  • Bladderella
    replied
    Re: Bladderella...how are you?

    Oh, one more thing I meant to add. I asked the doctor how my bladder looked to him when he was doing the botox injections and cystoscopy. It was the first time he'd ever seen my bladder with his own eyes so I wanted to know what his assessment was. He said there was no bleeding, no glomerulations, and no Hunner's ulcers. He said my bladder actually looked pretty healthy. I said, "What?? Seriously?!" Then he said, "don't be mislead. The surface of your bladder looked fine, but that doesn't mean there's nothing going on beneath the surface, and that's the part we can't see." The first time I had a cystoscopy in Jan 2014 (with a different urologist I ended up dumping for the one I'm seeing now)... I saw the inside of my bladder on the screen. It looked wounded with visible spider-web like splotches of blood everywhere. Seeing that with your own eyes, it's a bit unsettling. Back then, whenever I pee'd, there was visible blood in the toilet so I knew something not normal was going on. The 1st urologist kept saying, "this is the worse bladder I've ever seen!" (way to apply that comforting, bedside manner with a new patient, doc). Apparently, that's not the case now. My current urologist thinks the Cystoprotek is responsible for helping the bladder surface to heal. I've been taking Cystoprotek for 8 months not knowing if it was doing me any good or not. Well, now I know!

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  • earthlady
    replied
    Re: Bladderella...how are you?

    I'm happy to hear that you've had some improvement- especially in regard to the leakage.

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  • Bladderella
    replied
    Re: Bladderella...how are you?

    I had my 6-week follow-up with my urologist yesterday. He was pleased to hear that my leaking has stopped and that my frequency has decreased a little, which is exactly what the botox was supposed to do. The improvement would be even better if I wasn't taking blood pressure medication which makes me pee. It's like a tug of war in my bladder. Anyhow, he said the botox should last 3-11 mos. He assured me that there is no danger in repeating the procedure if we need to. I told him I've started taking Miralax daily because I am always constipated. He was fine with that and said constipation is a common problem among IC/OAB patients. He didn't have an answer for why I have itchy bladder except to say that one theory is that the nerves in the urethra and bladder get mixed signals so that the nerves in the bladder go bonkers. He told me to keep taking hydroxyzine 3x a day. Ice packs give me some temporary relief but nothing long lasting. I'm so itchy sometimes that it feels like I have ants in my pants.

    I also talked to him about the new re-classification of pain medication, specifically hydrocodone. He explained that the main difference now is that a doctor must see the patient in person first before prescribing it. There's no more requesting pain medication over the phone and then the doctor calling it in to the pharmacy, or having the doctor write a prescription that you pick up at the front desk. My fear was that there were restrictions on whether or not pain medication can even be given, but that doesn't seem to be the case. I can live with that.

    Unless there's a drastic change in my condition in the next 7 months, I won't see the urologist again until July... after my daughter's wedding. I don't know when the botox will wear off, but I've got my fingers crossed that it will last me until then.
    Last edited by Bladderella; 12-20-2014, 02:32 AM.

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  • Bladderella
    replied
    Re: Bladderella...how are you?

    I had my 6-week follow-up with my urologist yesterday. He was pleased to hear that my leaking has stopped and that my frequency has decreased a little, which is exactly what the botox was supposed to do. The improvement would be even better if I wasn't taking blood pressure medication which makes me pee. It's like a tug of war in my bladder. Anyhow, he said the botox should last 3-11 mos. He assured me that there is no danger in repeating the procedure if we need to. I told him I've started taking Miralax daily because I am always constipated. He was fine with that and said constipation is a common problem among IC/OAB patients. He didn't have an answer for why I have itchy bladder except to say that one theory is that the nerves in the urethra and bladder get mixed signals so that the nerves in the bladder go bonkers. He told me to keep taking hydroxyzine 3x a day. Ice packs give me some temporary relief but nothing long lasting. I'm so itchy sometimes that it feels like I have ants in my pants.

    I also talked to him about the new re-classification of pain medication, specifically hydrocodone. He explained that the main difference now is that a doctor must see the patient in person first before prescribing it. There's no more requesting pain medication over the phone and then the doctor calling it in to the pharmacy, or having the doctor write a prescription that you pick up at the front desk. I can live with that.

    Unless there's a drastic change in my condition in the next 7 months, I won't see the urologist again until July... after my daughter's wedding. I don't know when the botox will wear off, but I've got my fingers crossed that it will last me until then.

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  • Bladderella
    replied
    Re: Bladderella...how are you?

    I had my 6-week follow-up with my urologist yesterday. I told him about my constipation and that I'm now taking Miralax every day. He said that was fine as constipation is a common problem for patients with IC/OAB. He explained that one theory is that the nerves in the bladder and intestines get mixed signals. When there is waste in the intestines, it puts pressure on the bladder because there isn't much space between those organs and the bladder goes bonkers. If I need to have a bowel movement, I usually have stabbing abdominal pain first. After the movement, the pain usually subsides, but then the itching sets in. smh

    My urologist was happy to hear that my leaking is gone and that the frequency has decreased. He said the botox "puts the bladder to sleep" so that it's not so active. He said the positive effects from the botox should last from 3-11 mos and that there is no danger in repeating the procedure if it's necessary. We also talked about the change the government has made in re-categorizing pain medication. He said hydrocodone can still be prescribed, but a doctor MUST see you in person first. Gone are the days that you could just call the doctor and have him call in a pain prescription for you. Unless there's a drastic change in my condition, I won't be seeing him again until after my daughter's wedding next June.

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  • ICNDonna
    replied
    Re: Bladderella...how are you?

    Originally posted by Bladderella View Post
    The stinging was there before I ever started using Miralax, so I don't believe Miralax is the cause. I really think most of it comes from being constipated or from having too much salt, i.e. chips. My bladder seems to have become more sensitive since the botox and whereas a handful of plain potato chips before was just fine, now it's too much. I was at the grocery store today and bought a bag of "No Salt" potato chips (I kinda laughed to myself and thought "what's the point?" when I saw the bag on the shelf but I figured I'd give 'em a try anyway.
    I take Miralax too and it doesn't cause any problem with my bladder pain. My pain meds cause constipation and it takes Colace plus Miralax to keep it under control --- it's the one my physician recommended.

    Donna

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  • Bladderella
    replied
    Re: Bladderella...how are you?

    Originally posted by joannharllee View Post
    PS How did you figure out the name Bladderella? Is it from Cinderella?
    I needed a screenname and that's the name that popped into my head at the time. It's not "from" Cinderella, but a humorous take on the name Cinderella. LOL

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  • joannharllee
    replied
    Re: Bladderella...how are you?

    Bladderella, most interesting how we all react differently. I can eat salt by the bag full (not that I would, I don't really like salty things, I usually buy non salted chips) and it would not affect my bladder at all. If I took a tiny amount of Miralax my bladder would go crazy. A hard thing to figure out. Hope you improve. Jo Ann

    PS How did you figure out the name Bladderella? Is it from Cinderella?

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  • Bladderella
    replied
    Re: Bladderella...how are you?

    Originally posted by joannharllee View Post
    Bladderella, you say that you now have a "stinging" sensation. I also see that you are now taking Miralax. Miralax contains polyethylene glycol, a chemical similar to Propylene glycol. Both of these chemicals cause my bladder to hurt and burn. I wonder if you could take something else for constipation for a few days (maybe magnesium?) to see if it is the Miralax that is causing the stinging. Just a thought. I so want you to feel better. Jo Ann
    The stinging was there before I ever started using Miralax, so I don't believe Miralax is the cause. I really think most of it comes from being constipated or from having too much salt, i.e. chips. My bladder seems to have become more sensitive since the botox and whereas a handful of plain potato chips before was just fine, now it's too much. I was at the grocery store today and bought a bag of "No Salt" potato chips (I kinda laughed to myself and thought "what's the point?" when I saw the bag on the shelf but I figured I'd give 'em a try anyway.

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  • joannharllee
    replied
    Re: Bladderella...how are you?

    Bladderella, you say that you now have a "stinging" sensation. I also see that you are now taking Miralax. Miralax contains polyethylene glycol, a chemical similar to Propylene glycol. Both of these chemicals cause my bladder to hurt and burn. I wonder if you could take something else for constipation for a few days (maybe magnesium?) to see if it is the Miralax that is causing the stinging. Just a thought. I so want you to feel better. Jo Ann

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  • my2boys99
    replied
    Re: Bladderella...how are you?

    That's great that you seem to have solved the OAB urgency and leaking. Maybe the burning is part of the recovery. It sure would be nice if that disappeared too. It sure is nice to hear that the Botox did help you some.

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  • ICNDonna
    replied
    Re: Bladderella...how are you?

    It sounds like you have seen some improvement. That's wonderful.


    Donna

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