Announcement

Collapse
No announcement yet.

new to site

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • new to site

    Hello! I am new to the site and thought I would share a little of my story. I was diagnosed with IC in 2004, and as you all know went through the hydro, cysto, all the meds the standard stuff. I had an interstim implanted in 2005 which offered some relief. I have had problems with the interstim such as pain in the area of the implant and leads, being shocked, etc. I have had to have the sensations adjusted 3x and next week I am going in to have the box and leads surgically re-adjusted. I know that it seems like a lot of trouble but before I had the implant I was using the bathroom on average, 120 x per day and was up every couple of hours during the night. It was awful. I would get up to use the bathroom then be in pain from emptying so I could not get back to sleep. The interstim has cut my bathroom trips in half. I am actually able to go more than just a few miles in the car before having to stop. So even though I have issues with it, for me the issues are worth it. I guess right now my issue is the pain management. When I was diagnosed, the dr. told me the good news was I was already at the severe level so I would not get worse, the bad news was it was not going to get any better. She basically said that other than managing my pain there was not a lot that could be done. She gave me percocet for the pain wich sucks. It takes about one hour to take effect then only lasts for about two hours. I was recently diagnosed with uterine fibroids and ovarian cysts which seem to make the IC much worse. I have been in a bad flare now for about two months and of course my dr. is out on maternity leave and because my case is so complicated ( I also only have one kidney with hx of renal disease) I can not seem to find any other dr willing to take me on as a patient. so at this point i am very frusterated and getting a little depressed. My family has been great but I dont think that they fully understand who depressing it is to feel icky and be in pain every day. I was really glad to find this site. I was never, in all the years of having IC, told about the diet. I was told to avoid coffee, spicy foods, and soda. That was it. I have found a wealth of information on here and can not wait for my dr. to get back. I have already scheduled a visit with her when she returns to talk about some of the info that I have got from your web site. So, thanks everyone. The information was very useful and hopefully will be helpful in getting my IC a little better under control.
    Right kidney removal 1992
    Diagnosed with IC 2002
    Nuerostim placement 2002
    Nuerostim adjusment (surgical) 2007
    Diagnosed with nueropathy 2007
    Diagnosed with essential tremors 2007
    Endometrial abblation 2007
    Interstim removal 2008
    Hysterectomy with bladder tuck 2008
    Vasculitis Unknown orgin 2008
    Fibromyalgia 2008



    Currently taking the sodium bicarb/lidocaine/hep bladder installs on a daily basis.
    Will start PT for pelvic floor dysfunction once healed from hysterectomy surg. on 2/21/08.
    I take 2400 mg of Nuerontin (800 3x per day)
    Valium 10mg 2x daily (morning and night)
    10 mg of oxycodone as needed for breakthru pain
    15 mg oxycontin 2x daily (morning and night)
    Cymbalta 20 mg 2x daily (morning and night)
    Lidoderm patches as needed
    Lidocaine gel as needed
    Pyridium as needed.

    I self cath 3x daily due to some retention from pain meds. Of course this is just a recommendation, If I am not having trouble or it is no convienent, I dont do it.

    Was told by my Rhumetologist that she is not sure what we are going to do to treat the Vasculitis and Fibro as they are both considered infamitory problems and I am alerigic to all anit-inflamitory meds.





    Me and my kids
    Susan age 16, Me, Whitney age 18




  • #2
    I am so sorry you have suffered so badly. Hopefully you can find support and encouragement on the boards!

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

    Comment


    • #3
      Hello and
      I am so glad you have found us..I am so sorry you have been going through such a rough time we all know how you feel and our here to support you in any way we can.. So if you have any questions or just need to vent just post away...

      Ronda
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        AND

        I am so glad your'e here at the icn. I am sure you will find comfort and understanding here. I am so sorry that you have to live in so much pain.

        Keep on the docs so they will help you!
        [FONT="Comic Sans MS"] [/Had some kind of bladder surgery at age 8. Severe frequency since a child. Diagnosed with ic in 2000.
        Hysterectomy for severe carcinoma insitu
        1994..1997 ovaries removed
        First hydro 2005 inflamatory polyps removed,trigonitis,urethritis, ic
        severe urethral stricture.April 2008-gallbladder removed..BRUTAL!
        Hashimotos throiditis
        angiomyolipomas of the kidney
        Medications:,atarax50mg,prilosec 20 mg,. Oxycontin 10 mg.up to 3xday, 20 mg oxycontin at bedtime.zocor 40 mg.,synthroid 112.mcg a day.
        I use a natural compounded hormone cream made for me, with estrogen,testosterone and progesterone.

        'TO PEE OR NOT TO PEE' is definately NOT the question for me!!!!!!! :

        Big hugs to all my ic friends!
        Debbie

        Comment


        • #5
          Hi~ I'm glad you found this sight. It's helped me a lot and I mean A LOT!!
          I try to whizz thru everyday--there might be something that is new or someone has found a miracle. Hey ya never know!! I was also diagnosed in 2004. I can not believe you were going to the bathrm so much. That is unreal. I hope they can adjust you so that you get better control. Everything you wrote I've either had happen to me or I've read about it happening to someone else--except for the unreal amount of time you spend in the bathrm--why did you even come out?? It's hard for anyone to understand something they've never been thru--that's what's so great about this sight. You'll never meet a more understanding group of people.
          Take care~angie
          p.s. You also might check to see if there is a support group in your area.

          Comment


          • #6
            TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
            My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

            Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
            Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
            I post to encourage and offer total support for rescue instillations.
            Find me on facebook: L. Clark Thomas
            Louann

            Comment


            • #7
              I'm so happy that you found our site. There really is a lot of information here. It sounds like you've had a really rough time. I hope that starting the diet will make you feel better, a lot of people say that is one of the biggest things that bring them relief.
              Christine



              I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
              1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
              2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
              I have tried every oral medication as well as rescue instills and DMSO.

              I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

              Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
              Also proud mom to the best Bullmastiff on earth, Claus

              Comment


              • #8
                Hi Capricorn,
                I know what your going through.Im considering the interstem.I have to drive to work everyday which is less than a 10 minute drive.I have to stop twice along the way to go.Since im a male its a little easier for me to go next to the door of the car.But im afraid im going to get arrested some day.I keep alot of medical documentation in my wallet and in my car in case I get pulled over.If I dont go I get nausous and vomit from the pressure on my bladder.To make things worse I have to drive a truck a short distance on the job.Im so tired of having to explain to everyone my condition.And when I return from a doctors office visit I get the question Oh so your ok now.I have less then 10 months to go before I can retire on my job.Im gritting my teeth that I can make it.I dont want to go the disabilty thing because I wouldnt be getting my full retirement pay.Also the SS disabilty takes forever to get.So im desprate to find some relief.I can sit in chair sometimes for 30 minutes before going to the restroom.But as soon as I get in the car the bumps in the road trigger the urgency.
                So you see your not the only one thats suffering.Last year I was called for Jury Duty.I went to my doctor for a note stating my condition.The Jury court insisted I show up that they a accomadate disabled people with no problem.They wouldnt excuse me from jury duty!I finally used the city attorney where I work to fax a letter to the court telling them I had to relieve myself next to the car and I had to go every 5 minutes.Their answer was to wear depends.Which I actually do wear.Male Depends.I was finally excused when the attorney chewed out the person on the phone and faxed a letter to the courthouse.Can you imagine me trying to drive downtown which is about 10 miles in traffic in the rain?If I made it I was going to bring a cup with me.And if I couldnt make it in the courthouse I was going to use the cup right in front of the building.Im sure they wouldve told me that. OH We didnt know you were that bad and wouldnt have called you down here.Well guess what? Im That Bad!Im just keeping my fingers crossed that I dont get called again this year.The doctor couldnt believe they turned down his note.
                Ive still got more storys to tell about my encounters which I will tell later on .Still waiting for that magic cure.
                Regards,GoldSeals
                54 year old male
                Diagnosed with IC in 1994
                Had symptoms since 1992
                Three cystoscopies.One biopsy with hydrodistention.
                This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                Comment


                • #9
                  I'm not a doctor, but couldn't you have a foley cathera put in with a bag? I've never heard of anyone quite as bad as you as far as frequency. There has to be a better solution to this.
                  Judi W.

                  Comment


                  • #10
                    Originally posted by jpwilkinson View Post
                    I'm not a doctor, but couldn't you have a foley cathera put in with a bag? I've never heard of anyone quite as bad as you as far as frequency. There has to be a better solution to this.
                    When I had the biopsy a few years ago I had to wear a catheter for a week.
                    Anyone that has interstistial cystitis knows that a catheter is the worse thing in the world.The best thing would just have the bladder removed because I believe all roads lead to this eventually.Everyone that kids themself that there is a real remedy is going to have a rude awakening.Sure there maybe treatments that can get rid of the symptoms but what happens when the bladder shrinks to a size thats is almost none existent?I may sound harsh,but when you go through some of these people which see you that are claiming to be experts and all they do is pat you on the back and bill your insurance company and will see you again in 3 months to repeat the ritual again and again.Untill some one comes out with a real solution then its a real waste of time.Sure there are people who arent that bad and maybe a pill or two will get rid of their symptoms.But the real ones who are suffering end up having the bladder removed.
                    There are experiments going with cloning bladders using stem cell technology.But it could be awhile before there is anything substantial to cure this dibilatating desease.
                    Just my two cents.
                    GoldSeals
                    54 year old male
                    Diagnosed with IC in 1994
                    Had symptoms since 1992
                    Three cystoscopies.One biopsy with hydrodistention.
                    This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
                    Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
                    Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and Quercetin

                    Comment


                    • #11
                      Bladder removal is rare. Only a very tiny percentage of IC patients are severe enough to consider this alternative. My IC was diagnosed in 1975 and if anything I am better than I was at diagnosis. My bladder is about the same size as it was then. I do have flares --- am in a severe one right now --- but I know the flare will end and I'll be back to feeling better.

                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      Have you checked the ICN Shop?
                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                      Patient Help: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      [3MG]

                      Anyone who says something is foolproof hasn't met a determined fool

                      Comment

                      Working...
                      X