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  • Help! Self Cathing questions!

    Hi, I just started self-cathing at home - my uro started me on a mixture from Dr. Parsons. I have not heard of anyone else doing this exact cocktail. It is: 3 cc sterile water, 5 cc 1% lidocaine, 3 cc sodium bicarbonate - and the contents of 1 Elmiron capsule. (I am tempted to use 2 because the Elmiron is so grainy/powdery and doesn't dissolve so much of it sticks to the syringe and doesn't even end up in the bladder)
    I have had trouble getting cath supplies that are workable. The 14 Fr straight catheter I received from my pharmacy hurts so much I will not use it again! eek (I am trying to get LoFric pediatric catheters - self-lubricating! they sound great)
    Question: I read about lidocaine in/on your urethra before you do the catheter so they are getting me some gel or something - but how do you get it in your urethra?
    Question: Would you mind sharing what you use - both as solutions and your cathing supplies?
    Question: What is the difference between Elmiron and Heparin in instillations? (my dr. said Elmiron is easier to get, since I already have the prescription, so that is what we are trying.)
    Question: Is it a new development to try Elmiron as an instillation? (It seems kind of grainy and it doesn't dissolve, so wouldn't that be kind of rough on the urethra/bladder?)
    I have been talking to Brenda (thank you so much) and reading everyones's posts here. The info I get here is so much more thorough than my dr. gives me! I am his first IC patient who is trying this, because oral medication hasn't been working. But he and his nurse don't have any answers to my questions - it is new territory - I am grateful he is working with me on it, but I am in a new frontier as far as urology in my area!
    Thank you for listening!
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

  • #2
    One of your area health care services can tell you where to get the catheters. I get mine direct shipped from a healthcare wharehouse. If you e-mail me at [email protected], I can answer more of your questions privately.

    Or you may send me a private message. Some of this is rather personal for me.
    Liz

    Comment


    • #3
      Sharon,
      Hope you are doing some better with the self-cathing. Michaela and Brianna have both answered questions for me before on instilling elmiron. Hopefully, they are still around and can help you too. Maybe you could ask your uro if you could get you in touch with some other drs that might be doing this? Also, he probably has many patients that self-cath for reasons other than instilling elmiron. Maybe he could get you in touch with some of those patients? For ex., I know my nurse told me that had patients who instilled antibiotics. As for as the elmiron goes, I know that Diane has said she had problems with the texture of the elmiron. Thankfully, it doesn't seem to affect me. Now, I am a little uncomfortable right after the instill & after I pee it out, but it doesn't last very long. I truly hope you get some answers. Instilling elmiron has really, really helped me.

      Brenda

      Comment


      • #4
        Trying Elmiron as part of an instill must be a new development and does not, to my knowledge, have any clinical trials backing it up--certainly Ortho-McNeil has not made this recommenation.

        I wonder what the risks and legal ramifications are for medical and lay individuals who recommend doing this. Isn't this going against the company guidelines for use of the drug.

        It can be gritty because the filler from the capsule does not disolve. You can tell this if you ever have one break open in your mouth. Some people have said that it feels like sandpaper.

        Who would be legally liable if someone heard about doing this and there was a very negative outcome.
        Liz

        Comment


        • #5
          Question: Would you mind sharing what you use - both as solutions and your cathing supplies?

          My doctor gives me the ped. cath from the office with the lube jelly i didn't find it hard to use it at all i thought it would be awful the rn told me to use a mirror at first but i found that just got into my way but until your use to it i would try that.


          Question: What is the difference between Elmiron and Heparin in instillations? (my dr. said Elmiron is easier to get, since I already have the prescription, so that is what we are trying.)

          i'm not sure what the diff is my uro told me the heparin got into your system faster and it helps people that the elimron doesnt help.


          Question: Is it a new development to try Elmiron as an instillation? (It seems kind of grainy and it doesn't dissolve, so wouldn't that be kind of rough on the urethra/bladder?)

          I think it would but i'm no doctor or rn i only know what my uro and rn tells me to do i wish you luck let us know how you are and how it works. grouphug
          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


          • #6
            Sharon, I answered your private message. Heparin for instills is only a prescription away--should you doctor choose it as your treatment option-- and it is supposed to soothe the bladder and urethra.
            Liz

            Comment


            • #7
              Is heparin different than DMSO? I didn't tolerate DMSO at all so maybe that is why my uro wanted me to instill elmiron. (????) Brianna, I believe, has done the elmiron instills for 2 years. She also told me that her uro's office has a lot of people doing it b/c it worked so well for her. I asked my uro about any studies on instilling elmiron & he didn't tell me of any. He simply said it made since to do it like this. (Gets it right where it needs to go without the side effects that some experience.) I remember once someone stated their uro had just returned from a conference where instilling elmiron had been discussed. (I cannot recall who posted that.) Anyway, I have read good things about heparin so maybe it could help us even more. Who knows b/c we all respond so differently to treatments!

              Brenda

              Comment


              • #8
                DMSO and heparin are entirely different medications. Heparin is usually painless to instill. I did self instillations of heparin for quite some time and it did help, but not as much as the DMSO so that's what I have now.

                There are physicians who are recommending elmiron as an instillation --- it may be some time before results are known. Some feel it helps them a great deal; some find it irritating. As long as you are working with your doctor, I encourage you to do whatever helps you.

                Warm healing thoughts,
                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


                • #9
                  After reading Dianne's post about the problems she had with Elmiron instills, I called my uro's office and asked if they would dilute it with water (and omit the sodium chloride)--the nurse said of course, no problem. (I suspect that the sodium is burning me like crazy, too, since I couldn't tolerate dmso, marcaine, & heparin instills; they made me flare so badly it wasn't worth the effort.) So now I just have to get up the courage and strength to make the 2 1/2 hour drive. I already talked to my pharmacist who said he doesn't have any caths--I will have to get them somewhere else. Do you use the same one over and over or wash one out after each use? Someone mentioned a pediatric feeding tube--do you need a prescription for caths, feeding tubes, etc.? One more issue--the uro nurse told me I have the smallest ureter she's ever seen. I asked if that could be responsible for my ic symptoms; she said no way. Wonder how I'll do with self-cathing. I'm to the point where I will try anything!

                  Comment


                  • #10
                    Thank you for all your responses! You have no idea how helpful this is! Only other IC patients understand what it takes to take care of our bladders! angel
                    - 2 urologists in my area told me about using Elmiron instillations - they both attended a seminar in which it was discussed. I was told it came from Dr. Lowell Parsons, the research doctor who worked to develop Elmiron.
                    I do feel the gritty texture when I take it orally - I have started taking it out of the capsules and just dumping it in my mouth! It hardly has any taste at all, and I swallow it with water - much easier than taking pills for me. It does seem counter-intuitive as an instill, though, but I'm willing to try it. If it doesn't bring relief, I will ask for Heparin. I just wish there was some literature about it other than the few of us who are or have tried it.
                    Thanks all of you so much. I will let you know when I find out what the solution (pun ) is for me! lmao
                    [SIZE="2"][FONT="Lucida Console"]
                    My blog: http://icandpne.wordpress.com
                    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                    Comment


                    • #11
                      I was told to use catheters, syringes and needles one-time only... but I know others wash with really hot water and soap... guess it depends on the supplies you have. Also - I have a stainless steel cup for the mixture that I boil right before use to sterilize it. It is hard keeping everything sterile!
                      Does anyone use sterile gloves? (I bought some and then found out they said "not sterile" on the packaging - dang it!)
                      [SIZE="2"][FONT="Lucida Console"]
                      My blog: http://icandpne.wordpress.com
                      1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                      Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                      Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                      Comment


                      • #12
                        Vinyl powderless gloves that are labeled sterile are available at Walgreens.

                        IC dx 1996
                        Interstim 2000 removed & reimplanted 2001 & 2004
                        Hunners ulcers
                        urgency/frequency
                        Pain

                        Comment


                        • #13
                          Thank you Jen! :p
                          If you want to know something, ask an IC patient!
                          [SIZE="2"][FONT="Lucida Console"]
                          My blog: http://icandpne.wordpress.com
                          1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
                          Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
                          Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

                          Comment


                          • #14
                            I think some people's experiences are the exception and not what happens to most of us. I am extremely allergic; my allergy list is a page long, and I have not been allergic to most of the items mentioned here as problems, i.e. the sodium part of these mixtures. Per chemistry, that sodium molecule that you are referring to works a little differently than the sodium in table salt.

                            However, I would keep in mind the fact that each person's body is different.

                            Usually a pharmacy does not stock catheters. Feeding tubes like some of your are discussing are available from vet supply houses. However, I would pursue a health care route. They are usually better in trying to meet total patient needs when you have to have caths and irrigation sized syringes.

                            If you private message me, I can give you the name and phone number of a health warehouse that will ship all of your cath supplies direct to you. They probably know of and can recommend another supplier closer to you. They also can let you know if an initial prescription is needed; I cannot remember.

                            If you need syringes for injecting or drawing medication out of bottles, you do need a prescription; these are different from irrigation syringes. I am a diabetic and my injection syringes are available from and filled at a pharmacy.

                            I personally have not been able to use gloves; I need more more sensitive hands. I wash my hands like a surgeon does. I believe all doctors recommend the use of a sterile solution like Betadine or Hibiclens for cleaning before cathing.
                            Liz

                            Comment


                            • #15
                              Hi,
                              wish I could be of more help but all I can say is I get the elmiron instills exactly as you are going to be doing but I get them done at the uro's office by my uro..I do not self cath so I can't really answer your questions but I thought you might like to hear that I am doing really well with the instills and they are helping me a great deal..just wanted to toss a bit of encouragment out to you or anyone that might be starting this type of treatment...best of luck with yours..hope it helps!!!
                              Lori

                              Comment

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