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  • sphinx
    replied
    Originally posted by vm View Post
    Make sure to let us know how that appointment goes on the 31st, OK?
    Thanks-I definitely will!!!

    Leave a comment:


  • vm
    replied
    Make sure to let us know how that appointment goes on the 31st, OK?

    Leave a comment:


  • sphinx
    replied
    Originally posted by Babs RN View Post
    I think we have walked in the same paths, or bathrooms for that matter. I worked as a clinic nurse, and have done ER, and ICU(and about a million other things too but those are some of the biggies). I now work in Home Health, but luckily I am the DON so I am in the office most of the time. The days I make home visits though, I know every potty between here and there on every highway. That isolation rooom thing is true too. I don't know how many times I have been drenched with sweat trying to get everything done, holding my pee in isolation gear knowing suiting back up would stink if I left to go potty! I used to have a nurse's bladder and could hold it for a whole shift. Now, NOT!

    Again welcome and let me know if I can answer anything. There a few of us nurse types around here too that can give ya some tips about working with this lovely illness in an environment that is not too IC friendly.

    Hugs,
    Barb
    Thank you! It's nice to have a "kindred spirit"!

    Leave a comment:


  • Babs RN
    replied
    I think we have walked in the same paths, or bathrooms for that matter. I worked as a clinic nurse, and have done ER, and ICU(and about a million other things too but those are some of the biggies). I now work in Home Health, but luckily I am the DON so I am in the office most of the time. The days I make home visits though, I know every potty between here and there on every highway. That isolation rooom thing is true too. I don't know how many times I have been drenched with sweat trying to get everything done, holding my pee in isolation gear knowing suiting back up would stink if I left to go potty! I used to have a nurse's bladder and could hold it for a whole shift. Now, NOT!

    Again welcome and let me know if I can answer anything. There a few of us nurse types around here too that can give ya some tips about working with this lovely illness in an environment that is not too IC friendly.

    Hugs,
    Barb

    Leave a comment:


  • sphinx
    replied
    Originally posted by Babs RN View Post
    Greetings from another nurse. I know how hard it is to pee and take care of patients--the "hey, oops let me finish that BP in a minute. I'm about to wet my pants" feeling. I hope they can find a combo of meds that will help you out and that your uro will take that step. You are never babbling on here by the way, that is what we are here for.

    Hugs,
    Barb
    LOL, nurses are supposed to be "notorious" over how long we can go without peeing, well I prove that wrong! What was bad was when I was a CHN, I knew where every bathroom was in town...not supposed to go in a patient's home, but if stuck there for a while, sometimes I just had to! Then being in the ICU, stuck in a room with someone on isolation, trying to get everything done at once....eesh. Now I am in in a clinic, more casual, but only one bathroom for many, many employees. Frustrating!

    Leave a comment:


  • Babs RN
    replied
    Greetings from another nurse. I know how hard it is to pee and take care of patients--the "hey, oops let me finish that BP in a minute. I'm about to wet my pants" feeling. I hope they can find a combo of meds that will help you out and that your uro will take that step. You are never babbling on here by the way, that is what we are here for.

    Hugs,
    Barb

    Leave a comment:


  • sphinx
    replied
    Thanks for your support. I guess I am just frustrated. In one way I am glad to finally have a diagnosis and have someone take me seriously after more than 4 years of problems! But now that I have a diagnosis, I want to hurry-hurry-hurry and do whatever I can to make things "better". I know there's no cure, but I also know that it can be managed......and that with my medications, there may be "issues". My Uro told me right off, that it would be a concern, so I am anxiously awaiting my appointment on Thursday.

    Leave a comment:


  • leelee88
    replied
    Hello and to the ICN...

    IC affects all of us in so many differant ways..Its a very strange disease..
    I just wanted to welcome you and dont ever think you are just babbling we are here to listen and try to help when we can...

    Ronda

    Leave a comment:


  • sphinx
    started a topic New-intro, whatever

    New-intro, whatever

    I recently received a diagnosis of IC, after several years of problems and seeing 4 different Uros. My dx came after a cysto/hydrodilation. I guess it's a long story, but I'd had other tests before that by other docs, but it wasn't until this guy that he took detailed histories, IC questionairres and used that plus the cysto for the dx. One Uro in the past put me on Detrol which didn't work. Another more recently tried me on Flomax which also didn't work. I see my current Uro (who is great, BTW) to f/u my cysto and decide on treatment on the 31st. We'd hoped perhaps the hydrodilation alone may help-it's been 1.5 weeks-so far no change.

    I think part of the problem with my diagnosis is that I don't have the severe pain that most of you have. I have frequency terribly, and discomfort in the pelvic/bladder area when I "have to go" (which is often), but no discreet pain, no burning when I pee, etc. I also tend to retain urine, not always, but have retained anywhere from 200-350cc urine.......which is funny cuz during a 48hour voiding diary half the time I was lucky to even pee that much each time, haha.

    My big concern, and for my uro, is treatment-I have a few other problems for which I am on several other medications, and when I talked to him first, he seemed hesitant to mess with meds, since some of what I am on are related to meds sometimes used for IC (makes me wonder how bad off I'd be if not on all these meds). I have fibromyalgia, rheumatoid arthritis, IBS, but am also bipolar. I take several meds for my bipolar disorder which I think is half the problem, because no one wants to touch those. He mentioned a couple things, which I guess we'll talk more about next week, but I am trying to learn as much as I can before then, so I will be well informed at my visit.

    I'm sorry this is so long. I guess I just have a lot going through my head. Another thing-my IC does not seem to be a flare kind of thing. My fibro flares, my RA flares, but I pee a gazillion times a day no matter what. The only thing that makes a difference is caffeine which makes it worse, but even without it, I still practically live in the bathroom. I'm a nurse, and it's not always easy to find time to use the bathroom, although I don't work in a busy hospital which is a lucky thing I guess.

    Thanks for listening to me babble.
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