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I'm done. I want this bladder OUT!

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  • I'm done. I want this bladder OUT!

    So, today I'm in this stunningly beautiful part of the country looking out over the ocean and I can't enjoy it because I'm in pain.

    I'm done. I want to enjoy life. I want this pain to end. I don't care if I don't have a bladder. I don't care if I have to pee from a hole in my tummy. I want my life back! I want my bladder out now.

    I've had IC for four years now - the first year was crappy, the next couple of years were ok with some periods of remission...but always with a fear of ic returning and occasional flares.

    Since December I've been in a flare I just can't kick. Nothing is working. I tried elavil - it made me both retain and become insanely depressed and anxious. Elmiron gave me a constant headache for two solids months. I tried atarax and it made me retain and did nothing for my symptoms. My GP gave me a prescription for percoset...knocks me out, gives me extreme nausea, and makes me retain. I tried an antidepressant and it made me retain.

    The pain has worn me down. I give up. I don't want to give in...and that's why I want my bladder out.

    The only therapies that I've yet to try are instillations, the medtronic thing (which wouldn't work anyway because pain is my main symptom) and the two experimental drugs - cytotek and the immunosupressants. I've got a uro appointment this coming week and I'm going to ask him about the rest of the therapies and bring up bladder removal. I'm young. I want to be able to live my life without pain.

    There...I said it.
    mom_in_ma

  • #2
    Oh gosh, it sounds like you're at your wits end. We can all relate to that. I really hope that you try some other things before you seriously think about bladder removal. I know that you are miserable it's obviously a very serious surgery. I hope that whatever happens that there is finally some relief in your near future.
    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


    • #3
      I'm so sorry to hear about your depression right now. WE all understand and I send you many many . I wish you the best
      Live your life to YOUR best, and Love to YOUR best!!!



      DX in 03 with Shingles
      Removal of Left ovary due to Cyst in 2005,
      I have had cyst since I started my period as a child age 12
      Hysterecotmy December 06
      IC DX March 07 by PST
      2 "rescue" instills in March 07
      Cyco May 07 confirmed IC
      Uro study June 07
      1st Pain Block July 17,08
      Hydro/Cysto Nov 11, 2008
      12-11-08 was told I had alot of inflamation

      Meds: Allergic to 6 things
      Premarin......taking the gen cause I get it at Walmart for 4$$
      Presique for my drepression :woohoo:
      Abilify for my depression
      Adderall ...found out I'm ADD...makes sense now
      Kolopin for anxiety
      Noroco for my pain
      Valtrex for my shingles as needed

      Sorry if my spelling is off on the meds [/FONT]


      http://community.webshots.com/user/s...host=community

      Comment


      • #4
        (((((((((((((hugs))))))))))))))

        And More Hugs, Trishann

        Comment


        • #5
          Sorry that you are in such a flare right now. It is encouraging to hear that you do get remissions at times. Cystectomy/bladder removal is done as a last resort after ALL other methods have been tried, so most likely your uro will want to try other things before you go that route. I can certainly understand why you want the surgery, BUT if your main symptom is pain, there are no guarantees that surgery will cure that. I hope your uro will have some other ideas of things for you to try. Keep us posted as to what goes on, okay? Judith

          Comment


          • #6
            Thanks everyone. Most of the time I'm rational, but then the depression sets in and I (quite clearly from my last post) lose it for a moment. Honestly, I'm really struggling. I'm trying to find joy...and I do when I look at my son...or stand by the ocean, but it's so hard not to be pulled into the depths of IC. I've crossed into the anger/depression part of grieving and it's taking over.

            None of us should have to deal with this pain!
            mom_in_ma

            Comment


            • #7
              You really need to talk to your doctor about this.. IC can cause many people to sink into depression. You might need something to help you with this, please contact your doctor...
              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


              • #8
                Rhonda,
                Yes, I do need to talk to my doctor about the depression. I've got an appointment with him in about a week. I tried paxil, but it's making me retain and it's really the only antidepressant that works for me as an antidepressent. Celexa sent me into a huge anxiety attack when I tried it last fall.

                The good thing is that I've got a very understanding husband and I've been very open with him about how I've been feeling lately. He's watching out for me.
                mom_in_ma

                Comment


                • #9
                  Thats wonderful..
                  My husband is my rock to.. I about fell apart to before I got on Cymbalta it has really worked well for me.. Good luck and I hope things get brighter for you

                  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


                  • #10
                    I'm glad to hear that cymbalta worked for you. I'll talk to my doctor about it.
                    mom_in_ma

                    Comment


                    • #11
                      Robin,
                      It sounds like you have a list of medical options you might want to try before bladder removal, which you can't reverse. It has been a positive treatment for some people on this board. (The thought has crossed my mind before and recently more frequently despite the fact of no guarantees it will work.) Immunosuppression seems interesting to me and due to another health challenge, I know the immunosuppression meds are getting better. Perhaps, if you could try one of the new ones you would have less side effects. They are a very serious drug and you need to study and understand the risks. The side effects can be hard on you, but perhaps if you can tolerate them relief would come.

                      Currently, I am in the L.A. area and have thought about going to visit Dr. Raz. I have a lot of respect for him and he is doing bladder removals.

                      How many different opiods have you tried? Sometimes a combo of a few different meds can be a good option -- like a med soup, then you end up taking less of all the drugs vs. taking a lot of one med. The list of meds, I went thru in 1 1/2 years was two pages long and only a combo of two worked to partially alleviate the constant pain/urgency. I am still disabled, but happy to not be in a permanent path between the bed and the bathroom as before. There are people who take opiods and lead a normal life (i.e. work, go to the gym, raise their kids, etc. -- can't exactly remember what normal is but you know what I mean...) I take Provigal to help with the side effect of the pain killer -- it wakes me up and keeps me alert. It also seems to make me feel less down.

                      The ocean is the most beautiful place! I love being on the beach. I hope the next time you near the ocean you will be able to enjoy it without pain.

                      ads

                      Comment


                      • #12
                        Hi Robin,
                        As someone who "failed" most IC treatments (I think there were 15 things we tried) before I got to the instillations, I understand the frustration. I do want to encourage you - there is still help out there. I also was told, "instillations, interstim, or clinical trial", so I know the desperation. I decided the instillations were the least risky & most affordable, so that's what I did first.

                        And it has worked out well. The home instillations are what has made the most difference in my IC symptoms and in my sense of control over the illness. I use Heparin, Marcaine, Sodium Bicarbonate & sterile water. On weeks when I feel good, I do them about 3x. On weeks where I am flaring, every day. The best thing is that if I wake up in a flare, I can do a treatment at home & feel better & go about my day. I went from missing 12-17 days of work per year (out of 186 work days total) down to only 5 missed days due to IC this year.

                        I really didn't want to do the instillations, was afraid of catheters, was worried about UTI's, but neither has been a problem & I am so grateful for the relief they provide. Physical therapy has also been a big help for me, even though I didn't have pelvic floor problems initially, after 4 years of IC, I now do & PT is a huge part of my feeling better.

                        I just want you to know that there is hope. That you can feel better again, even if you are very sick right now. I was very sick for the first year of IC, pretty sick the second year, ok enough the third year (instillations helped), and this year with the instillations & PT, most days feel pretty good.

                        Hang in there, sending a hug,
                        Kadi

                        -------------------------------------------------------------
                        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.
                        ------------------------------------------------------


                        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                        Source - Pinterest
                        "


                        Current treatments:
                        -IC diet
                        -Elavil 50mg at night
                        -Continuous use birth control pills (4-5 periods/year)
                        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                        -Pyridium if needed,
                        -Pain medicine at bedtime daily, as needed during the day several times per week
                        -Antibiotic when doing an instillation to prevent UTI
                        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                        -Dye Free Benadryl 50 mg at bedtime
                        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                        -Managing stress= VERY important!
                        -Fur therapy: Hugging the cat!

                        Comment


                        • #13
                          Robin --

                          I'm so sorry you are in such a period of depression, but I am glad you have a good relationship with your doctor, so you can ask about meds for that -- as well as new options for IC.

                          I know how frustrating it is. I swore I'd never try the InterStim, but after oral treatments (I couldn't take Elavil for other reasons, so that's the only one I never was able to try) only reduced my frequency/urgency from 45 times a day or so to 20-25, I changed my mind and went for the Stim despite earlier refusal. Since I had both frequency/urgency and pain, it has helped tremendously with the f/u, but I do still have pain -- maybe not as often, but I can have some pretty bad days. So, I think you are making a wise decision not to try this therapy for yourself if you have just pain -- even Medtronic states it is not for pain.

                          As a person with a tough case of IC, I understand your frustrated thoughts. I have yelled, on bad days, that I just want my f-ing bladder out numerous times. Frustration and pain does that to all of us!!

                          Just wanted to make sure you and your doc think long and hard about such a big decision before you make it... and I'd definitely try instill therapy before doing the surgery. I know heparin/bicarb/lidocaine ones done at home are part of my pain toolkit, and they do help! They ease both pain and urgency, so I can wake up and go to work more easily, just as Kadi has said.

                          Personally, I did terribly with DMSO (and we think the chemical further damaged my already weak bladder, which had been suffering from undiagnosed IC for over 20 years, since 8 years old)... others have done well with this instill and despite my response, please don't rule it out.

                          Just wanted to send lots of :grouphugs: to you... and if you want to chat, even if I am not on the boards I always answer PM's, okay?
                          ****
                          Jen

                          *Diagnosed with severe IC in 2004
                          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                          **I am not a medical authority nor do I offer definitive medical advice. 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.

                          Comment


                          • #14
                            Kadi and Jen,
                            Thanks for being so reassuring. Both of you have been great sources of inspiration for me here on this board and I appreciate the time you took to respond.

                            I've had a rough year and at first I was ok with the flare because I'd gotten through them before and was managing them well. But, now it's just getting worse and not better and I'm slowly losing it.

                            I was in remission and I think my pregnancy last fall (which was a complete surprise and ended in a horrible second trimester miscarriage) was likely the catalist for this flare. I'm just MAD at the world right now. It's not fair that I had to go through that experience and now suffer with the pain of IC. It's just not fair. It's not fair for any of us to have to have this pain.
                            mom_in_ma

                            Comment


                            • #15
                              Originally posted by Judith56 View Post
                              Sorry that you are in such a flare right now. It is encouraging to hear that you do get remissions at times. Cystectomy/bladder removal is done as a last resort after ALL other methods have been tried, so most likely your uro will want to try other things before you go that route. I can certainly understand why you want the surgery, BUT if your main symptom is pain, there are no guarantees that surgery will cure that. I hope your uro will have some other ideas of things for you to try. Keep us posted as to what goes on, okay? Judith

                              I agree with Judith. Some of us have it worse than Others. Take Me. I have gone through 18 surgies and I still have the IC and I had my Bladder removed 23 years ago as the Last resort. I also had my right Kidney removed in 2004. There are alot of nes things out there compared to when I had my first surgery. Please Look at all your Options. I am so sorry that you are having so many bad Days. Please Talk to your uro. There are Plenty of us on this Board that can tell you it is not always a bed of roses.

                              I will pray for you. If I can help in any way Please let me know Okay.

                              Hugs
                              DebbieD

                              Plenty of Cystos
                              Hunners Ulcers
                              S2 Nerve Block-Plus Self Cathing every 15 minuites
                              2-cecum-cysto-palstic Bladders- Part Bowel and Part Bladder
                              Ileo-conduit Plus 4 revisions Plus Ureatha removal
                              Hysterectomy
                              Right Kidney removed
                              Now I have stents Placed in my Left Ureter cause of Blockage.Every 2 Months

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