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I did it! Iterstim success!!

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  • #1

    I did it! Iterstim success!!

    ne!
    I DID IT!!!! At 24yeats old and after suffering with IC for the past 9 years AND
    After a week of trial and absolutly wonderful success with the iterstim trial, I had the permanent interstim generator and lead put in today!! It has been wonderful so far (the trial week). I went from peeing every 20-30 minutes to peeingonce every 2-3 hours. It was been lifechanging over the past week. Today dr. McSherry implanted the generator, but the lead had to be placed in a different spot because the place it was located for my trial week was effecting the muscles of my right leg and foot. She gave me the option to go for another trial week, but I opted not to do that, so hopefull the spot it is in now will be just as successful! Today was the day of surgery though, so I still can't really tell. Especially since there is so much pain there too. I will keep you all posted! Thank you for all of your support!

    Anne
    I am the mother to my beautiful son Parker Thomas.
    I have had IC for 10 years, and I also have migraines, endometriosis, pelvic adhesions, osteopenia, peptic ulcers, fibromyalgia, and PFD.
    I am currently prescribed Effexor XR 150 for depression/anxiety, 50mcg Fentanyl patch, Percocet for breakthrough pain, Klonipin for sleep and anxiety, and d-amphetamine salt xl for ADHD and excessive daytime sleepiness due to my pain meds, Pyridium, 10 mg of Valium (inserted vaginally to relax pelvic floor muscles, and I do bladder instillations once a day consisting of a mixture of 3cc Sodium Bicarbonate, 5CC Lidocane, & 22cc of Heparin. I also regularly use a prescribed TENS unit for pelvic pain, along with lots of rest in bed with my four, four-legged furry friends. (I once heard called "fur-therapy")
    There is always something beautiful around you, sometimes you just have to look for it!
    Tags: None
    • #2
      Hi, Anne ~ Wow, I'm so happy you're content with your decision and seem to be on a road to feeling so much better. At your age you certainly need to find some relief of the frequency so you can enjoy the active life it takes as a "Mommy".

      Keep us posted. Prayers that you continue to feel this wonderful and that everything heals quickly.
      Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

      11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
      8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
      8/2010 Surg gallbladder
      TREATMENTS (updated 4/15)
      IC Diet since 8/2009 (Able to vary 4/15)
      Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
      Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
      Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
      *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
      Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
      PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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        • #3
          Please keep us posted. I hope it works well for you.


          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

            • #4
              Interstim

              Can you please tell me how this product works. The Urologist just brought this up to my wife because her bladder will still have urine retention and this leads to bacteria infection...

              Do wires show in the back after surgery? From the google search I have done- it seems that this is the case. In addition- any MRIs that may need to be done in the future- the device will need to be taken out....

                Comment

                • #5
                  The interstim is not usually recommended until all other possible treatment options have been tried and failed. Mugabi, has your wife tried one of the medications that help relax the muscles to make it easier to empty? The ones that immediately come to my mind are hytrin, cardura, and flomax --- I know there are also others.

                  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

                    • #6
                      So glad your doing better!!!!
                      28 yrs old,

                      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                      Me in my graduation gown!

                        Comment

                        • #7
                          interstim

                          Ann,
                          That's great! I hope that you continue to feel improvement/
                          Laurie

                            Comment

                            • #8
                              Tha nks

                              Originally posted by ICNDonna
                              The interstim is not usually recommended until all other possible treatment options have been tried and failed. Mugabi, has your wife tried one of the medications that help relax the muscles to make it easier to empty? The ones that immediately come to my mind are hytrin, cardura, and flomax --- I know there are also others.

                              Donna
                              She got the IC diagnosis about three years ago. The pattern typically was a couple of major flare-ups a year. She would see the Urologist and they would wash out the bladder and she was fine. The flare-ups have increased lately. Healthy- no-smoker 40 year old.

                              They have her on Elmiron and she has been on that for about a year. Her white blood count is high so they give her anti-biotics during the flare-up.

                              We just started Prelief as well as probiotics (daily). We are also focusing on healthy- high nutrition foods- Dr. Furhman's Eat to Live diet which has had some success with auto-immune disease.

                              The Urologist mentioned Lyrica and/or immunitripolian drugs but is worried about the amount of drugs in her system at such a young age. The interstim seems radical to me at this stage in out IC battle.

                              We have two young kids- my wife works and she does not handle stress the best but we are working on that.

                              Thanks for the inputs. I will ask about those drugs mentioned above.

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