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  • #16
    It really hurts when they take that stent out, but once they are out, you'll be like thank god. I had 3 small stones when I had the surgery and afterwards I passed about 30 small ones. I had no trouble passing them after the laser surgery other than some degree of pain but I guess your better off keeping the stents in if you can tolerate it & maybe that won't happen to you.

    Comment


    • #17
      bladderpain451

      Hi I am glad there are no hard feelings sometimes it is hard to express oneself through words alone.

      You said{I've also been told that the pressure in my bladder could be so bad that it makes it feel like my kidney is hurting, but it's just due to my bladder problems.} do you have retention issues too? Retention causes me as much problems as IC. The pressure gets so bad at times I can't stand it, it drives me nuts, I have to be really careful what meds I take or try as a lot of them make my retention worse. My muscle which makes the bladder contract dosen't work.


      You said {sometimes I've felt urine in my kidney burning like in my bladder} I am glad to read this I have not heard ift from many people, sometimes mine also feels like it is quite a bit colder than the rest of me, a strange sensation to say the least, and other times I get real sudden intense spasam pains that will drop me to my knees. I have been told in the past this is a stone moving, or a spasam in the main artey feeding the kidney, not sure how they know that one, and of course that it is IC.


      You said {sometimes it's felt like I have reflux where the urine washes back up in the kidney,} my Dr. figures this is why sometimes I get diagnosed at the ER with stones, as the reflux makes the uriters dialate from the kidneys down, the exrays with the dye show this so they figure I have a blockage and the blockage must be a stone, sometimes it is, sometimes not.

      You said {You might want to consider letting them biopsy it. Alot of inflammation doesn't show up unless they scope you and look. I don't know why that is. But I always thought kidney inflammation would show up in a scan} I have had more tests than I can remember, but I am sure I have not had a kidney biopsy, at this point I would not consider it as I am the best I have ever been. I plan to write a post as to what brought me from not being able to get out of bed to pretty close to normal. I do not consider myself cured or even in a remission, just symptoms have greatly improved and with that my quality of life has improved.


      I find everytime I have any procedures or tests they always set me back for quite a period of time. If I get cathed it causes really bad retention which ussally leads to infection. The last hydro I had the hospital would not let me leave they were afraid my bladder would burst, but also did not want to cath me again, this was not fun. Last cat scan I had the dye caused me to have a major flare for 3 weeks and bad retention, they told me it could do that, the scan was not optional I had to have it to rule out MS, but I would have been prewarned it could do that to me, the last 5 or 6 ultrasounds they get you to drink the water to have a full bladder which I can do as retention is the problem, but then they till me to go pee and they recheck, but I can't pee any by then I am in agony, and so the cycle goes. The last in office cysto caused severe retention then infection etc etc.
      I need to have a fasting gluecose test done every 6 mons the first one they handed me a orange bottle of glucose to drink, I told them I could not drink it it would bother my bladder, I was told well there is no real orange in it, like a dumb ass I drank it and was doubled over in pain in my bladder and throwing it up so the test had to be redone anyways. After researching I now chew up 30 glucose tablets like large sweet tarts, but I can get them in other flavors and I take gravol prior to the test. Last twilight sedation that usally knocks people out or at least they don't remeber didn't work on me. My track record with tests is not batting 1000.


      So for now my plan is to only see my GP and my uro, if I can, not to have any unneeded tests, or try any new meds if I can get away with it. I have alot of drug and food allergies so everytime I take something it is a crap shoot what will happen. I ussally get the reverse effect from most meds, or am allergic to it. I have a hard time getting new Dr.s to believe me so I try to only see my Dr.'s who know me well, it prevents a lot of mishaps.


      Hope things are going well for you. MG

      cosake

      Why are they only doing one side at a time, I am sure they have a reason but it sounds like it is going to prolong the missery for you. Keep us posted on how it goes for you.
      My are with you all. May you all find a way to peace and joy in your lives.

      Comment


      • #18
        I've had past retention at times, and that is so painful, but not lately. I've had tests to confirm no retention. I have to just sit on the toilet until it all drains out, because it quits and restarts, then quits, restarts. If I get up and think I'm done, and I'm not, I pea on myself, but it comes out, lol. Retention always made my kidneys hurt too. Yes a kidney stone can cause a very strong spasm, but if they suspected that, they should have did a spiral CT on you or a KUB x-ray. Sometimes you have to get it done more than once for it to show all, especially with the smaller stones. Stones can be dangerous, it can cause your kidney's to fail if they get blocked. I can't believe they speculated with you and didn't do the tests. Sorry for the problems your having, at least your bladder is okay right now.

        Comment


        • #19
          Cosake

          I was going to ask the same question as Mothergoose, why are they making you wait a week between lithos? Is it just because one of the stones is so big? Because it seems as though that's happened to me before too. I know they don't want all the leftover stone clogging things up, but since you have stents, that shouldn't be a problem. I know there's a good reason, but it does sound like added misery. I'm so sorry you're going thru this. I hope your stents and your pain are good to you today!
          Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
          Lexapro-20 mg
          Aciphex
          Ambien-as needed
          Percocet-7.5 up to 3 per day as needed
          Valium-10 mg x2 per day
          Phenergan-1 at night
          Prelief w/everything
          Now recovering from acute pancreatitis

          Currents treatments that help somewhat:
          Heating pad
          Hot baths
          Ice
          Being VERY still while lying down with legs elevated

          Comment


          • #20
            I had the KUB exray a few times but they didn't find any stones, and as I said I don't do well with the dye.

            Also since my last bad kidney infection has cleared up, I had a one last summer that pretty much layed me up for 3 mos my kidney has not been giving me much of a problem.

            I wierd sensations in the kidney passed a while ago, this is something that comes and goes, sometimes for years at a time, so this is why they lean towards stones, some people say you get them every 7 years, who knows I know people who get them a lot more often than that.

            Because of my problems with tests and feeling the best I have felt in years, I don't want any tests right now. But having said that I totally trust both of my Dr.'s and if my kidney becomes a problem again I will have the tests if they figure I should.

            The other thing is I live in Canada and it has come to light in the last few months that unsafe practices were being used and potentially 100 of thousands of people have been exposed to Hep b hep c and HIV, the risk is very low but till they get this all figured out I don't want any procedures at the hospitals. As far as I know they have not had anyone come back pos yet but you get the first test and then 6 mos after theat test you get tested again. Now they are figuring the risk is so low they don't want to test, they will but they try to convince you you don't need it.

            I just as soon if I can wait till this is figured out and not take the risk.
            I also have immunity problems I don't have much so I catch things easy and have a hard time getting rid of things.

            Another factor is I am now a snow bird and am away from home till probably Mar. I then want to go hoime repack and take a cursie to europe and go see my son. Not sure if this will happen but one can hope. My health has to stay good or it is too hard to make big trips like that.

            As I said as soon as I get the time I am going to post what I have done which has greatly improved my quaility of life.

            Have a good day, it sounds like we have a lot of simular problems. A kinder spirt. As you know once people start to feel better they come to the boards less, I did not intend to but we moved in Nov and didn't bring anything with us so we had to start stocking and furnishing a whole house from mid Nov to xmas, and CLEAN, CLEAN, CLEAN. We bought some used furniture it is really nice stuff. but came out of a filthy house with cat pee and cat hair on everything, it all cleaned up really nice but I can tell you I wondered at the time if it was worth it.

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

            Comment


            • #21
              You can get a spiral CT and you wouldn't need dye for that. I wouldn't worry if the KUB didn't show any. There is one thing you can always be assured of if you have stones, if they get blocked, you will cry in miserable unbearable pain. Thanks for letting me know they typically come back in 7 years, I think I am going to cry now. ((( Is there anything they can do for your immunity problem? Mine is overactive, meds really help. Cats are usually excellent about using a litter box, mine has even attempted the toilet, lol. One of my dogs even uses the litter box. I have another yorkie that would rather roll over and die before they will potty train. I had to burn up one living room set already (set my mom's hillside on fire too - but that was my nephew's fault, not mine haha), but I'm getting ready to pitch out another. What did you use to get it clean?

              Comment


              • #22
                I'll just add that when this IC nightmare started in full force in October, I had a KUB. It looked from the xray that I had multiple stones trying to pass at the same time. And I did have kidney pain along with bladder pain. But then when we did the spiral ct (no dye) they found that wasn't the case. Frankly, I'm not sure why I always have to have a KUB, because I also end up having to have a ct scan anyway. After the uro (who has always treated all my kidney stones) realized it wasn't stones, he threw 3 boxes of Prosed at me and told me to come back in 6 months. He wouldn't even talk about IC except to have his nurse tell me I don't have it. And THAT'S why he's not my uro anymore!!

                (Also, I have a Yorkie who can't be bothered by potty training. Tiny head, tiny brain, and luckily, tiny poop. My DH just got her her own heating pad because I'm so over fighting her for mine and it hurts when she lays on my bladder. Sometimes I think I'm spoiled. And then I just look over at that dog 5 lbs of problem!!
                Oh my gosh!!!)
                Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                Lexapro-20 mg
                Aciphex
                Ambien-as needed
                Percocet-7.5 up to 3 per day as needed
                Valium-10 mg x2 per day
                Phenergan-1 at night
                Prelief w/everything
                Now recovering from acute pancreatitis

                Currents treatments that help somewhat:
                Heating pad
                Hot baths
                Ice
                Being VERY still while lying down with legs elevated

                Comment


                • #23
                  Yes i do know if I get hit with stones again I will have no option but to seek treatment from who ever is avaialbe.

                  I bought a pet and stain deoderizer from Lowes, I ran out so I don't have a bottle to go read the lable off of. I bought the big jug and used lots but it did work, it even got rid of cig smell.

                  I was told not everyone will get more stones but if you get them more than once you are prone to get them again.

                  No there is nothing they can do for my immunity, I am told I was probably born this way, I always knew I caught more than my fair share of bugs that went around. Now that i know I really try to stay away from sick people and wash my hands lots, and try to keep my hands away from my face.

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

                  Comment


                  • #24
                    I have 3 yorkies, what a trip they are.


                    Mothergoose, you might ask your doctor about putting you on a low dose of doxycycline, it's a very good anti-malarial antibiotic, it might help.

                    Comment


                    • #25
                      Awww...so cute!!

                      I have no idea how to post a picture of my "baby" because it would have to be from my iPhone or my iPad, and I just haven't found a way but yours are precious!! If I'd known how much we were going to love her, we would've gotten 3, too!!! But she has a big sister border collie (plus 2 cats, 2 frogs and 2 kids) so they are Mutt and Jeff!!

                      Back to the kidney stones, I've had them, I have them now and I think I will always have them. I'm lucky right now in that it's been almost a year since I've had to have litho. I think this is the longest I've gone in years.
                      Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
                      Lexapro-20 mg
                      Aciphex
                      Ambien-as needed
                      Percocet-7.5 up to 3 per day as needed
                      Valium-10 mg x2 per day
                      Phenergan-1 at night
                      Prelief w/everything
                      Now recovering from acute pancreatitis

                      Currents treatments that help somewhat:
                      Heating pad
                      Hot baths
                      Ice
                      Being VERY still while lying down with legs elevated

                      Comment


                      • #26
                        If you can get them downloaded on your computer, you can use photobucket and copy the link to the image. I don't own either, but I figure with the iphone, all you would need is a USB charging cable that connects your iphone to your computer USB port. I use micro SD cards and SanDisk and just put a SD card reader/writer into the USB port and put the card in it, and it downloads my photos. You can get those for around $5 and up at walmart if you use SD cards with either the iphone or ipad.

                        Comment


                        • #27
                          Very cute babies, I just had to have my dog put down, she had been quite sick for quite a while and it was no longer fair to keep her alive, it was very hard to do but it was time. The vet said she would have done it 2 years ago if I had asked and felt it was right. she didn't suffer for the 2 years but had a few ups and downs, once she was suffering it was time. We had her 14 years.

                          The saving grace is we still have 2 cats, I want another dog, but my husband is not sure. I walk in the woods lots and my dogs have savedme frombearsso many times I really miss having one.

                          I have tried many ab's as a prevention, but that one you mentioned no longer works for meand most have the side effect of causing me not to sleep.

                          I don't think it is the ab but a preservative or colourant they put with it, my best bet is to try to keep the retention at bay.

                          thanks for the suggestion.

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

                          Comment


                          • #28
                            I was taking 600mg a day of doxycycline, my RNP went from 7.3 and shot down to 4.3. It helps overactive immunity but I heard it also strengthens your immune system. I had the opposite effect, it worked great the start with but then I got too sleepy while taking it, I think the dosage was too high. They put me on plaquenil, so I really don't need 2 antimalarials. I don't know why this particular antibiotic helps strengthen and helps overactivity both, maybe where it's antimalarial? I've heard stories too where people say doxycyline cured them. Most antibiotics actually weeken your immune system with long term use. Have you tried vitamin C to keep from being sick? I don't know what the rule is with vitamin C and IC. I don't have many things that trigger my bladder problems, just stuff that makes me pea really bad, alcohol, caffeine, or apple juice, those are my no no's.
                            Last edited by bladderpain451; 01-14-2011, 04:09 AM.

                            Comment


                            • #29
                              I take ester C buffered vit c, when I get sick, I can't take it full time or it will bother my bladder too.

                              Thanks for the suggestions.

                              I actually have gone since Sept without a UTI, longest I have gone in 10 years.

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

                              Comment


                              • #30
                                Hi all - Here's an update.

                                Had my litho on the left side on Monday. Been passing sand-sized pieces of kidney stone so far. Not much pain so far either. Have another X-ray and dr. appt. next Wed. to check on progress on left side and see if we have to re-do the left side, or if we can move on and schedule the litho for the right side. He may remove the left stent at that appt. also.

                                Dr. only did one side at a time because there were blockages on both sides (hence the double stents), and he mentioned that they don't like to do both sides at the same time in case there is any problem or damage from the procedure, etc. Part of me is glad to only have one side sore right now, but part of me just wants this all over with !

                                I read the post about kidney stones every 7 years with interest. In March, it will be 7 years from my first kidney stone. No others until now.

                                Looking forward to having the stone pieces tested so that we can figure out why it's happening and help prevent it in the future.

                                I'm worried about the stress on my body causing an IC and/or Multiple Sclerosis flare-up, but so far so good. Trying to stay relaxed and as stress-free as possible in all other areas of my life.

                                Thanks for your support everyone !
                                Colleen

                                * ITP - autoimmune blood disorder - spleen removed 1978 and in remission since
                                * MS- diagnosed Jan-2010
                                * IC - confirmed by cysto and hydro Nov-2010 - currently taking no medication
                                * possible adenomyosis - suspected by urogyno May-2010
                                * low Vitamin D levels - taking 2000 IU daily
                                * sleep issues - 1/2 alprazolam

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