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  • True Success

    Please don't think IC is a fate worse than death

    I consider myself one of the luckiest people ever diagnosed with IC. After reading all the horror stories that you have suffered for such a long time with no relief, I am reluctant to share my story with you.

    I exhibited urge incontinence bladder spasms, involuntary flatulence and frequency issues after extensive pelvic surgery to correct multiple pelvic problems. Prior to surgery I consulted a urogynecologist for a second opinion. The first urogynecologist performed urodynamics that indicated bladder capacity and retention amounts within normal limits and recommended surgery for stress incontinence.

    At the follow-up visit after surgery my gynecologist diagnosed urge and frequency incontinence and a vault prolapse. He prescribed Detrol and referred me to the 2nd urogynecologist for evaluation.

    The 2nd urogynecologist ordered another urodynamics evaluation. The results after surgery greatly differed from the pre-surgery test. The urodynamics after surgery showed a bladder capacity greater than 600cc and residual greater than 250cc. His diagnoses was vault prolapse with frequency and urge incontinence. To address constipation and uncontrollable flatulence (I call it the “walking farts”) a rectal ultrasound and a rectal motility test were ordered. Can you belive that there are actually MD's that specialize in rectal ultrasound and rectal motliity? The results were within normal limits and no treatment was indicated. The urogyn prescribed physical therapy. PT was not the answer for me. He also wanted to do surgery to “take down the bladder sling” to correct the retention issues.

    I discontinued the Detrol as it decreased my urine flow to a dribble and did nothing to improve the urge or frequency issues. I returned to my gyn to discuss my treatment after completing physical therapy. When a residual showed with-in normal limits (30cc) he was quick to admit that he was stumped . Because I had normal retention with this test, if I had the surgery suggested, my stress incontinence would have returned.

    I know my gynecologist felt guilt because he thought he had caused my problems. The only symptom before surgery was stress incontinence and the new symptoms appeared so quickly after surgery. I am sure that is why he was so diligent in finding help for me. He then referred me to a 3rd urogynecologist. My gyn insisted that if this urogynecologist didn’t know how to treat my radical symptoms that he would know someone that could.

    During my initial visit with the 3rd urogynecologist, who coincidentally was a specialist in IC, agreed with the diagnosis of vault prolapse, urge, and frequency incontinence. He also determined that on that day I had a residual of 300cc. In the past 10+ years of treating IC patients he recognized what seemed to be inconsistent symptoms for IC . He wanted to give me a “cocktail” to which I replied, “Some how I don’t think that will be as pleasant as it sounds”. It was a bladder instillation. I could tell immediately that it was going to work . I was diagnosed with mild IC. I left his office that day with the appropriate treatment that arrested all symptoms. The first 3 visits were to evaluate the effectiveness of the instillations and the next 3 were for learning how to do home instillations. I had follow-up visits at 6 weeks, 18 weeks, 24 weeks, 36 weeks. I now return for follow-up visits every 6 months . He feels that because I was diagnosed early and the treatment is effective that my IC will probably not progress.

    My gynecologist admitted he had learned something. He said he would have never diagnosed IC in a thousand years and wanted my recipe.

    I hope my “success” will help others. I do have to travel about 90 miles for follow-up visits as I live in a very rural area. I just use the trip as an excuse to shop in the “Big City”. I want to encourage those that are having problems getting relief to consider traveling a little further. It is well worth my trip.

    My treatment is home instillations as needed (about every 3 days):
    lidocaine 8cc
    heparin 10,000 units

    I have saved my self a lot of time and money because I keep a medical folder of all test results, radiologist reports from x-rays, MRI’s, and operative notes from all the procedures and surgeries I have had.. The folder is now a 3” binder. The MD’s always comment how helpful the information is to them. Sometimes I still have the test again but they have the results and can compare to the other results. If you ask MD’s for a copy of the notes they will give them to you. The hospital may charge but I think they have to give you 1 copy without charge. I keep this information for my knee problems too--6 knee surgeries TKA on one knee and looking forward...NOT..to another TKA on the other knee in a few years.

    Thank you for allowing me to share my success story.
    I hope that this story will encourage you. My urogynecologist is an advocare. He told me that if I should need to do anything else not to worry he had "lots of tricks in his bag".

    I don’t have any idea how many of you must feel because I was diagnosed while in an early stage of IC. As I read your post I literally am so thankful that I have been so fortunate.

    My urogynecologist agrees that the nature of the disease is unpredictable, there is no cure, and sometimes finding treatment can be difficult. He also believes that IC is a lifelong condition but there are effective treatments can reduce or eliminate symptoms. He has noted that he is seeing a pattern that makes him believe that IC is a genetic disease that manifest itself after bladder trauma. Before the first visit with my urogynecologist I didn’t know anything about interstitial cystitis . I couldn’t even pronounce it.

    All of my doctors have made me aware that the nature of this disease is unpredictable and that old or new symptoms can appear from out of the blue. All my medical professionals are approachable and truly have my interest at heart. I do not worry about “what if something happens” because my PCP, gynecologist and urogynecologist or their nurses are available 24/7. They are really there because I have used the numbers, after hours, on weekends and at midnight. I know I will always have the help I need when I need it. Do I feel lucky? No I believe in the power of prayer, and so do they.

    2006 Update:
    Instills are still the only treatment I need to control all IC symptoms. I recently had another urodynamics to determine the extent of my vault prolapse. Results show that my bladder retention was within his “normal limit” of less than 125cc. The capacity is still 600+cc. and that will not decrease.

    I had extensive pelvic reconstruction in 2004, that included and ooprhorectomy and repair of bladder, small intestine, large intestine, and uterine prolapse. I developed valut prolapse a few months after surgery. My urogynecologist wants to wait until my symptoms are more bothersome before doing the surgery for vault prolapse. Hopefully this will take care of everything. When I have that surgery I think that I will have had everything repaired that can prolapse.

    2007 Update
    6 month follow-up: Everything is still going great. The number of instills has basically stabilized at 3-4 a week. All symptoms are controlled with treatments. I have no food sensitivities so I am able to eat any thing I want (which is to my disadvantage because I do).

    2009 still no problems Everything is still going great.
    Last edited by L. Thomas; 11-09-2009, 01:55 PM.
    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

  • #2
    how awesome, I am so glad you shared your story with us, it is very encouraging. It is great to know that you were not tossed around from doctor to doctor and told there was nothing wrong. I am so happy for you.
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      Thank you so much for taking the time to post all of that. It will help give others hope.
      Kim

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

      *****************************

      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

      Comment


      • #4
        I can't even imagine giving myself instillations...I would be so scared to do it myself, is it as hard as it sounds? It would probably make my life so much easier, but I'm not good about those things...

        Kari
        Kari

        I'm 47 years old, married 27 years. I have two wonderful boys and two wonderful grandchildren. I was diagnosed in 1994. Life has certainly thrown me many many surprises, all of which I'm trying to stay positive and hopeful, and I try to think about my blessings not my misfortunes, when possible. Stay Strong!

        Comment


        • #5
          Easy as Pie NOW

          You couldn't possibly be more apprehensive than me when it comes to catheters. I think it was the 3rd visit to my urogyn when we both knew that instillations were the solution for effective treatment for me. When he suggested home instillations I literally shook on the table. I lived so far from his office (90 miles) that he knew home instillations would be easier than traveling 180 miles 3 times a week. He told me that they would work with me and that I wouldn't be asked to do amything until I was ready.

          I went 3 visit and I felt comfortable to try at home.

          You could have knocked me over with a feather. It really is not as hard as you would think. And when I self-cath there is no discomfort. I have even requested that I do my cathing at the hospital and they honored my request. They were really shocked at my request and I think more shocked that I could actually self-cath.
          Last edited by L. Thomas; 04-22-2007, 08:09 PM.
          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


          • #6
            Do you FEEL improvement in constipation/gas?

            I think my initial bladder insult has caused my "irritable bowel syndrom" WITH CONSTIPATION AND GAS.

            Comment


            • #7
              I am glad you posted your story. Your story will give hope and help to the newbies and it show, if diagnosed early and treatments started early enough, that remission can be obtain.

              Again thanks for the wonderful post, I am sure you will help many
              God grant me the serinity to withstand the days ahead!!!

              My myspace link...
              www.myspace.com/patricia_luvs_matt


              Patricia

              In Memory of My Father (Lawerence) 1/25/2007

              Procedures:
              Interstim Sept 2001
              1st InterStim Removal May 2005
              2nd Interstim Implanted May 2005
              2nd InterStim Removed March 2007
              Hysterectomy 1999
              Tubes Tied 1997
              C-Section 1996


              Me and my kids


              Taylor (my daughter) Me and my daughter My son Cody and Taylor

              Comment


              • #8
                Hi!!! I love reading the success stories, I seek them out actually on the boards. I am SO happy for you.

                I also have been diagnosed early - this has been going on for me since mid-November 2006 brought on by a staph infection. I have a wonderful urogynolcologist who has made IC and pelvic pain his speciality. I have had 2 bladder instillation treatments so far in his office (same cocktail as you) and while the cathader gave me significant discomfort the first day, the second wasn't nearly as bad - hardly any urethra pain. The instillation treatments (just 2!!) have made me feel 75% better...really!! I have 7 more scheduled I think, then I too will ask about learning how to do it at home. (I hate cathaders, but hey, if you can do it I can do it, right?)

                Between that, the physical therapy for PFD and Elmiron/hydroxydine + diet modification I'm feeling certain I will get well and be "normal" again. If you asked me 1 month ago I was pretty certain I had a rare form of cancer that was killing me slowly by torture.

                I am glad you are well.

                Comment


                • #9
                  Home instillations

                  If I couldn't have the home instillations, I would be in bed all the time crying. They are are Godsend. A good example of how much they saved my life (in terms of being able to go somewhere with my husband or just laying at home crying), is when I had a flare-up an hour before we we supposed to go to my husband's work office Christmas party. It was being held at the Georgia Aquarium, so I didn't want to miss it, plus, my husband and I hadn't gone anywhere together for a long time. It was very important that I go to this party. I didn't care about the food (catered by Wolfgang Puck - but couldn't eat a bit of it!!!), didn't care about the prizes or seeing his workmates I'd not seen in a year, but mainly, just to be there with my husband!!! That's what was important (well to see the Aquarium too...). Stress and anxiety are my biggest triggers for flares and I obviously was having both. I was burning so bad. If I didn't have the rescue instillations in the frig downstairs, I wouldn't have been able to go. I went downstairs, got alll the 'equipment' I needed and the syringe with the premixed Lidocaine, Heparin, Distilled Water, and Soduim Bicarbonate. As soon as that heavenly, cold, medicine hit the inside of my bladder, I felt like someone had poured water on a raging forest fire (excuse the reference to a forest....sounds 'punny'!). I praised my doctor and nurse (and God) all the way to the party. We were able to stay for 3 hours!!! If I hadn't been able to get an instillation, the whole night would have been miserable for me and my husband. I do the home instills on the weekend and sometimes during the weeknights (if something brings on a flare). They work instantly and provide relief for a long time. I am sooooo glad I learned how to self-cath and can do these at home...otherwise, I'd be in the doctor's office (only go twice per week), everyday and in the ER on the weekends....and we all know how understanding the people in the ER are about I.C.!!! Let's get some education in there to those people (no offense to anyone reading this who is a healthcare giver in the hospital!).

                  Anyway....home instills.....a blessing for sure!

                  Dani


                  Originally posted by soccermom32
                  Hi!!! I love reading the success stories, I seek them out actually on the boards. I am SO happy for you.

                  I also have been diagnosed early - this has been going on for me since mid-November 2006 brought on by a staph infection. I have a wonderful urogynolcologist who has made IC and pelvic pain his speciality. I have had 2 bladder instillation treatments so far in his office (same cocktail as you) and while the cathader gave me significant discomfort the first day, the second wasn't nearly as bad - hardly any urethra pain. The instillation treatments (just 2!!) have made me feel 75% better...really!! I have 7 more scheduled I think, then I too will ask about learning how to do it at home. (I hate cathaders, but hey, if you can do it I can do it, right?)

                  Between that, the physical therapy for PFD and Elmiron/hydroxydine + diet modification I'm feeling certain I will get well and be "normal" again. If you asked me 1 month ago I was pretty certain I had a rare form of cancer that was killing me slowly by torture.

                  I am glad you are well.
                  Dani


                  -Bladder surgery to correct reflux-'68
                  -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                  -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                  -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                  -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                  PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                  -DX'd with IBS in 2000
                  -Rhabdomyolysis in 2001 (has not returned)
                  -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                  -DX'd with TMJ in 2000-wear splint
                  -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                  -DX'd with Epilepsy -2000
                  -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                  -DX'd with Fibromyalgia (2006)

                  Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                  Comment


                  • #10
                    For those who had the instillations and have bowel dysmotility,does it help with that?

                    Let me know please i'm very curious about that.
                    Last edited by Tip and IBS; 03-13-2007, 09:49 AM.

                    Comment


                    • #11
                      bowel & Motility

                      Tip & Ibs,
                      When I was having my instills (I also have ibs (d) w/ motility problems) the instills did not affect them in the least. What did make a difference was my gut Dr. put me on Zelnorm and amitiza 2x daily. Even though I an prone to diarreha, it has straightened my motility problems out immensly! If my (D) gets too bad I cut back on the amitiza , but that very seldom ever happens.
                      I would go see a Dr. that specializes in gastoenterology if you haven't already, so that you can get on some sort of regime to strighten it out.
                      Hope that helps!
                      Blessings ,
                      Eva

                      Comment


                      • #12
                        good for you!

                        L,
                        I'm so very glad they caught your IC in the early stages! I think that it is awesome that you can do your own instills. I also think your prognosis is more than encoraging! Good Luck to You!!!! :woohoo:
                        Blessings & Higs,
                        Eva

                        Comment


                        • #13
                          I am not being notified of the post on my own thread..I must have hit the wrong button.

                          Yes, the instills completey take care of bowel dysmotility. Before I was diagnosed I was referred to Vanderbilt. I could not believe that there was actually a MD specialized and does nothing but motility test. But the real shocker was the MD that specialzed in rectal ultrasound.

                          Bowel dymotility was my presenting symptom. My urogynecologist is a specialist in IC and he said he had only diagnosed IC connected with this 25-30 times so it was a shocker when the treatment worked. I know didn't know that my smyptoms were IC, but as you can see in my signature, I've got the signs. I just didn't know how it worked together. I was most concerned with "the walking farts". And my gyn was plain old disgusied that he couldn't help me. He is the one that wouldn't give up. I think most MD's would have said "that's life live with it".

                          At first I couldn't get the timing right for when I needed a treatment. So I ended up doing an instill every day for a while. Then I slowly figured out to watch for my symptoms and do an instill when the symptoms first start to show.
                          Last edited by L. Thomas; 05-04-2007, 04:12 PM.
                          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


                          • #14
                            Yes, the instills completey takes care of bowel dysmotility.
                            ARE YOU SERIOUS?

                            That is amazing!I have pubic sigmoid motility problem that seems to originate from a bladder insult(holding for too long years ago).From then,i have "irritable bowel" which the worst symptoms are meteorism and constipation all around the belly.

                            I HAVE NO IDEA WHERE TO TURN FOR A INSTILLATION TRIAL IN QUEBEC,CANADA.

                            Comment


                            • #15
                              Originally posted by Tip and IBS View Post
                              ARE YOU SERIOUS?

                              That is amazing!I have pubic sigmoid motility problem that seems to originate from a bladder insult(holding for too long years ago).From then,i have "irritable bowel" which the worst symptoms are meteorism and constipation all around the belly.

                              I HAVE NO IDEA WHERE TO TURN FOR A INSTILLATION TRIAL IN QUEBEC,CANADA.
                              Well the instills took care of everything for me. Good luck finding someone.
                              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

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