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  • Snowden1
    replied
    The Prosed bothered my bladder - maybe the dye or the acidity level - I had issues after using that one. I think you are right to ask your doctor about it.

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  • ermkenne
    replied
    Hello,

    I noticed you have been dealing with urinary retention. Trust me I have been there. 24 years old and dependent on catheters at times. Sometimes a lot of stress can cause spasms to occur, and that can shut off your urethra causing you not to urinate. Right before xmas I was cathing so many times a day because I simply could not go. I had so much pain, drinking water, doing everything I should, and nothing. It is a terrible experience, and I have been there. I actually had to catheterize myself at work in a public restroom (yes it can be done-without a mirror, because mine fell in the toilet ). My doctor put me on Sanctura XR 60 mg, and it has helped with the spasms and the overactive bladder issues at times. I have not had any more episodes of urinary retention. Maybe you can ask about that?? The pain is the worst. I hate having IC pain, and am on my own customized treatment regimen. I do rescue instillations. I know that some of the meds you are on will take a while (elmiron) to work to its full potential. Also, not sure if you were told this but Percocet can cause TERRIBLE constipation. I usually take a stool softener with it to help (docusate sodium, I believe it is dulcolax, just ask the pharmacist about it). It helped when I had constipation issues, and found out it was due to the pain meds.

    If you have any questions, don't hesitate to Private message me or reply on here.

    Erin

    Try to relax and concentrate on your breathing. I hope you start feeling better. I know, easier said than done. Just keep a positive attitude (as well as you can). Trust me, I have gone through some VERY dark days. ***hugs****

    Leave a comment:


  • flowerangela
    replied
    and i did get my second opinion the other day before i went to the er as a last resort. the uro i went to see said he agrees with my uros diagnosis and my uro is one of the most respected drs in town. hes the only dr in town that really deals with this.etc.

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  • flowerangela
    replied
    well the percoset is working way better than it did before when just my uro prescribed it. the diludad in the iv was the BEST though.sure i will pm you.i'm also off the pyridium..they told me to stop taking it cuz i'd be on it almost a month now and it wasnt doing anything for me other than turning my pee orange. i did get a rx for the prosed..the stuff that turns your pee blue but im not gonna take fill that till i see my uro and ask his opinion. none of these that change colors really help me. the dye irritates me.

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  • Snowden1
    replied
    Oh, you even sound so much better. So, you think the Percoset is working better than the Diluadid? I wonder what dosage they gave you at ER. I really wish all ER's would be as responsive as yours was. Some are much better than others. Could you P.M. me with the hospital you went to? In case we are ever transfered around there - it sounds like the medical help was very good. I have been asking for a copy of my record now everytime I leave the ER. (bloodwork, other tests etc). I have found these to be helpful when I have to see a new doctor and just for myself to see medications, dosages etc that worked and I may need at another visit. I know I paranoid, but with a disease no one understands I find I must do what I can.

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  • flowerangela
    replied
    teresa- they prescribed me phernigan for nausea/vomiting it is also an antihistamine. it doesnt make me drowsy though.i was so happy not to feel pain even if it was only for a night!strangely the percoset is working better. maybe the er gave me a stronger rx than my dr. i take 2 325 mg when im in pain now.can barely feel it now.getting used to this foley but loving the idea of not having to get up and goin to strain to go pee. im drinking plenty of water. next is to get the ic diet out.. and try to stick to it/buy some groceries.go to dr tues and find a psych sometime this month.thanx for your kind words and help cindi i will keep you all posted.
    Last edited by flowerangela; 02-18-2011, 06:04 PM. Reason: spelling

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  • cmclien
    replied
    Wow, SO glad you went in. See, there was a reason you couldn't pee! You poor thing. so glad you went and found help and relief! Let us know Tue how you and your doctor appt went.

    Leave a comment:


  • Snowden1
    replied
    Wow, now that ER is on top of things. Good for you!!! Maybe that foley catheter will allow your bladder to heal some. Did they give you Zofran for nausea? I am taking Diluadid extended release now. It is not strong enough and they want me to think about a pain pump. But, I know how well it just cuts through the pain at the ER. It's like you can breathe again. Thanks for letting us know how you are. I am sooo glad you got some relief.

    Leave a comment:


  • flowerangela
    replied
    hey thanks for words of wisdom fellow icers. i ended up having to go the ER yesterday.waited 6 hrs in the waiting room because they were havin alot of traumas comin in but it was worth it. didnt get home till 3am. i couldnt pee and was in so much pain and that woman that was filling in for my dr never called me back or refilled my pain meds. they ended up giving me diludad through an iv (that was HEAVEN) couldnt feel a thing,refilled my percoset,and put a foley catheter in.also gave me a prescription for antib cipro cuz they tested my pee and i had a UTI on top of this and a rx for nausea,diarrhea,etc i look so stylish w/ a bag of pee on the side of my leg. lol. they said to make an appt w/ my dr on tues since hes out of town till then.im going to have a serious discussion with him.i'm also gonna start hunting for a psych this week. wish me luck.

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  • Snowden1
    replied
    Hi, pyridium also does that to me. I get nauseated, and then after a few days it hurts more. You could ask your dr. for Prosed DS which is similiar. It didn't help me either, but it may help with you. We are all different.

    How many times are you peeing per day? If you are having severe retention and cannot pee you should go to the ER to be checked. Just tell them how long it has been and you can't go. You may need to stop a medication. Your doctor should be helping you with this. If you are not getting good responses you need to find a new dr.

    Leave a comment:


  • flowerangela
    replied
    im dealing with nausea,diarhea and constipation on top of all this. i just had an "accident" and my family jumped on me about it. im young i shouldnt be having all this pain and accidents. i feel helpless. drs wont even help me. i dont think i need the pyridium. i havent had any spasms before and its starting to feel like the dye in it is irritating me down there.im feeling very sick from all these medications...hard for me to pee when i do pee. im drinking plenty of water it just wont come.

    Leave a comment:


  • Snowden1
    replied
    Hmm... why would he tell your mom it is infection behind your bladder then tell you something totally different? I see why you are thinking about switching. You should do whatever you feel comfortable with.

    I wonder if the pyridium may be making you nauseated. I had trouble with that. Are you eating with it? If not it can make you really feel ill.

    If you think that you may not be peeing you should go in. I went into ER and they checked me for this. You can have them check with an ultrasound thing. You can also have your uro show you how to self cath in case you need to do it in the future. I know I felt better after know how to do this.

    Please take care, if you ever need to pm someone when you are in pain feel free to pm me. I am usually up very late most evenings with pain etc.

    Most people on this board have found solutions to help them live much better.

    Leave a comment:


  • flowerangela
    replied
    i found a temporary solution to my pain if u read my thread under pain management.i am going to have to try to make another appointment with him
    what i had originally planned to do and go no matter how much pain i am in to get some answers. i dont know if he diagnosed me on IC based on the appearance of the hunners ulcers on cystoscopy or just based off of the symptoms i have been telling him.my mom seems to remember him coming out to see her after the cystoscopy and telling her my bladder and kidneys looked totally normal.there had just been an infection behind my bladder that was hard to clear up.next thing you know.. they call me tell me he made a diagnosis of IC and i will be coming in for bladder treatments. I have not spoken with him since the day of cystoscopy before they put me under. all i know is this cysto and the instills made my pain worse than it originally was. and im still wondering.. IC or not,could it be something else?

    Leave a comment:


  • flowerangela
    replied
    oh and as far as the diet ive been trying to stick to it as best as i can. drinking water i do drink enough water but it seems like i can never pee. like im always dehydrated. this morning it was so hard to go. i fear im going to have to start cathing myself at home cuz i cant get it to come out.

    Leave a comment:


  • flowerangela
    replied
    I hate this disease. I called the office today to get an immediate refill on my pain meds "theyre not here today but will be here tomorrow so theyll do it first thing in the morning". im hurting bad.the percoset isnt even touching this pain anymore. the pain started after the hydro and got worse after the instill. i called the female urologists office who i was thinking about going to for a second opinion and she accepts patients 'by referral only from your pcp'...that means i would have to go back to my pcp who i dont have a good relationship with who doesnt know about all this stuff about me going to the urologist and explain the whole thing and say i need a referral.
    Last edited by ICNDonna; 02-16-2011, 11:36 AM.

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