Announcement

Collapse
No announcement yet.

Successful Heparin instill

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

  • Successful Heparin instill

    I was real nervous about getting this instill yesterday. My only other instill was after my PST two weeks ago and for those who remember, it was the most painful experience of my life and threw me into a flare. This time I had a female nurse-practitioner and she used a red-robin or red-rubber cathether which is a lot more flexible. She also used extra lubrication and lidocaine gel. ALSO- she didn't use Betadine this time. I am not allergic to iodine that I know of but after being swathed in Betadine for my d&c last year I had some major burning with urination so the nurse decided to let me clean up good with some alcohol wipes before hand and hopefully I won't have any infections. I have read a lot on these boards but never heard about anyone having problems with Betadine but I do think it's a problem for me so I thought I'd throw it out there. The NP had a lot more trouble getting the red rubber catheter in (lots more wiggling) but it wasn't as uncomfortable for me this time. I will see the Uro-GYN on Monday and he will perform my next instill. I pray that it wasn't his technique and I will make sure he uses the red rubber cath and hopefully this time he'll let me relax a bit more. I took 1.0 mg of Ativan to help me as well and I'll be doing that everytime now until I can get myself comfortable with the whole process. I do have a bit more pain today than normal but I am figuring this is normal anytime anyone messes around down there?? My hope is that a day or two of extra discomfort will be worth the results after 3 weeks of these instills (3 times a week). Any feedback ladies?? Thanks!! And I hope this post was helpful to those who have had trouble with instills. Charisse
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

  • #2
    It sounds like you are having some success. I hope everything keep going great.

    I started with 6 in office instills at 3 a week then I started home instills. I had instant relief. Instills are all I need.
    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


    • #3
      I am hoping all I need is the instills but trying not to get too excited yet. Is it normal to have some urethra discomfort after the instills? The menstrual type cramping pain is gone for now but my uretha feels pretty sore.
      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

      Comment


      • #4
        A number of people seem to have that same experience with urethra pain. They say the pain is only temporary.

        Some think that a latex free cath help them.
        Using lidocaine gel before the catheter is inserted has helped some.
        I have also read that the "red" rubber cath seems to be more comfortable for some. ( I think they the nurses at the hospital call them "easy out" catheters)
        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


        • #5
          I have only had urethral pain after instills when I was first learning to do them myself -- I guess I didn't have to smoothest technique, LOL. Now I've learned to relax and breathe out as the catheter goes in, and I hardly feel it at all. No pain afterwards. Maybe when you get more comfortable with the process you won't have that soreness afterwards, but to answer your question, it is pretty common for some soreness to occur. I wouldn't worry about it as long as it goes away within a few days and as long as you're not bleeding.
          Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
          Wishing you happiness and good health, and all the best out of life.

          Peace, Carolyn
          ___________________________________________________

          Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


          On the Beach with IC

          Comment


          • #6
            I spoke too soon. The cramping returned last night even worse. I took a Pyridium and a hot shower and laid in bed and finally fell asleep. I always feel better after laying down but as soon as I get up again the pain returns. I feel like this last instill has inflamed my bladder again. I was out of a flare before I had it done and now it seems to have flared me up again. The cramping gets worse when I bend over or do any kind of activity.
            The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
            First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
            Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
            Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
            Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
            BABY GIRL 10/28/08 *** BABY BOY 7/8/11

            Comment


            • #7
              Heparin Instills

              I just started my first Heparin instill tonight with lidocaine and sodium bicarbonate. So, I'm waiting for the results to come in. I've been in the worst 3 week flare that I've ever heard of or experienced. I've tried 2 other types of instills plus 75 DMSO instills with little success. My questions is what combinations are you all trying with your Heparin instillations?
              Also, I have tremendous, new urethral pain and cannot figure out why it has developed. Any advice is welcome! I'm on the elimination diet to find out if it is a food trigger but no luck so far. Thanks!
              Arizonian

              Comment


              • #8
                Did the urethral pain develop after your instill? It might be irritation from the catheter. I have had worsening pain after my instills so my UroGYN has decided today that we won't continue those. In fact he's not even sure I have IC now because he thinks the Heparin should have offered immediate relief although from what I've read here that's not always true. I just want to know what is going on with me! I am not sure what besides Heparin was put into the instill. I know they used lidocaine the second time which made the procedure a lot less painful.
                The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                Comment


                • #9
                  From what I have read there is tremendous variability among patients with respect to who responds to what. I got worse with DMSO, but responded beautifully to elmiron. I am in a flare so I decided to try heparin instills with xylocaine. So far I am not too impressed. I don't think they make me worse but I have certainly not had a dramatic improvement. I have been using the Lofric catheter that I heard about here and it is really great. No urethral pain at all before, during or afterwards. I asked my uro's nurse why he does not use them. She said it is because they cost too much. They are not all that expensive so I can't believe that he would let me suffer for two days just to save a few cents. Boy that ****** me off. I buy and bring my own now.

                  Comment


                  • #10
                    Originally posted by Kathleen Philli View Post
                    From what I have read there is tremendous variability among patients with respect to who responds to what.
                    That's it in a nutshell. Just like any other treatment. Some have great results and others have horrible experiences . There are numerous recipes for instillations. Some are only a few cc's and only have 3 ingredients like mine and others are as large as 100cc and have 4 or 5 ingredients.

                    The prescription for using instills are just as varied . I use them as needed. Others only have instills in the office. Some have 1 a week for 6 weeks and some have 3 a week for 6 weeks.

                    Just remember it's like any other disease. Instills work for some :woohoo: and not for others . If it works for you great. If it doesn't work for you don't give up. There are lots of treatments.

                    The first thing is having a diagnosis of IC. The second is a physician that will work with you.

                    Don't forget
                    You have support here.


                    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


                    • #11
                      I think personally for me that it's the action of putting a catheter in that puts me into the flare and not so much what kind of medication they are instilling. Of course it's hard to tell but that's what it feels like because the pain usually starts in my urethra and within a few hours after my instill I get bad bladder cramping and this lasts for 3 days at a pretty bad intensity and then slowly over the period of a week I will get better. Today is one week since my last instill and I'm just starting to feel like the pain level is going down. Does anyone else feel this way about the catheters? My second one didn't hurt during the process because she used lidocaine and a red rubber catheter but a few hours later the pain kicked in.
                      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                      Comment


                      • #12
                        To make cathing more comfortable, I tried a bunch of different sizes & types (latex, nonlatex). I also take a warm shower first to relax & rinse with warm water after the instillation... Heating pad helps too.
                        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
                          I must agree the non latex cath work much better. At least they do for me. the red cath are latex they caused me a great deal of burning, and irradiation. Lidocane may also be helpful. However it needs time to work before an installment is applied five to ten mins before hand should do the trick.

                          Good Luck
                          Dixie
                          Medicine taken daily or as needed:
                          1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
                          2. MS.Cotin 100mg 3x daily
                          3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
                          4. Fentanyl 100 mg Change every 48hrs.
                          5. Gentamicin 80mg install after each rescue treatment
                          5 Leviquin 500mg self start as needed.
                          6. Klonopin 1 or 2 daily as needed.
                          7. Prosed/DS as 1 every 6hrs as needed.





                          I have IC, but IC doesn't have me anymore!

                          Comment


                          • #14
                            Temporary?

                            --------------------------------------------------------------------------------

                            Hi there.

                            During an instill, Uro tried a bigger catheter to get the Elmiron in too and still a week later I am in incredible pain. Does it go away and how long does it take? Help!

                            Thanks.

                            Comment


                            • #15
                              I have such horrible urethral pain from the instills that they are "almost" not worth it. The jury is actually still out as to whether I will try them again. The only thing, other than Percocet, that helps me with the urethral pain is heat or ice between the legs. Heat always works for me but I guess ice works too. I have to use a real hot pack, the little stick on ones don't do it. Problem is, you can't really do anything while you have a hot pack on your urethra.
                              Last edited by cia; 07-04-2007, 03:35 PM. Reason: grammar
                              I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                              DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                              I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                              Comment

                              Working...
                              X