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Self cath DME Post Botox

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  • #1

    Self cath DME Post Botox

    I'm new to this site and I hope that someone can help me.

    I have MS. The meds I use to control bladder spasms are invoking an allergic reaction and doesn't always control continence. There is no alternative med available.

    I have been advised to have botox bladder injections. But, because the botox can work so well that a person can't empty the bladder at all I must be able to self cath.

    I am looking for a mirror whose handle snakes around the leg so that I can see what I'm doing. I have spent hours, days searching the web! I have been able to find a cath guide but not the mirror does anyone know of a location?

    Additionally, I'd like to locate a cath holder - as an extension from my hand to the catheter (short arms, large body, I'll be cathing from wheelchair or recliner.

    Any help will be greatly appreicated.

    Betty
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  • #2
    Betty
    I wish I could help you, but I dont self cath, so I have no idea. I just wanted to tell you welcome and glad you found us..

    Im sure you will get more replys and maybe someone can help you...
    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.

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    • #3
      Betty

      Betty,

      I am looking for you now. If I find something I will post it right away. I am having some trouble locating the mirror but I do know for sure that there are catheters out there that are long enough for you to try using. Mine are 16 inches in length. You could try calling your doctor or a physical therapist to see if they have any ideas. I get all of my urinary catheters from a supply comany called Edgepark but there are tons of them out there. http://www.edgepark.com/ You could also try calling one of them to see if they have any ideas. Some of them have nurses to help aid in such situations. You could also look for an MS support group to see how they manage this situation. But I will keep looking in hopes of finding you something suitable. When I first started to learn how to catheterize my urethra, I taped a hand mirror to the toilet seat with duct tape. Maybe you could tape the mirror onto some part of the wheel chair or recliner. I will keep thinking for ideas as well.

      Sincerely,

      Kara
      Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

      "One hour at a time, this was NOT my American Dream but it has to work out somehow."

      I also have some journals of my journeys, past and some present at:
      http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

      Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

      Comment

      • #4
        Is that common?

        One of the urologists I go to said that sometimes the Botox works so well for IC that you can't go pee at all and have to self- cath. Well to me that's not much better than the other situation of having to go all the time! Is this common or is it just a possible side effect?

        Comment

        • #5
          Update Botox Dme

          Thanks to those of you who replied.

          I was able to locate the mirror and purchase the mirror.

          But when I went back to my Urologist he indicated that because of my body habist (large) and mobility that we could try the Botox but in a suprapubic catheter so that in case the botox didn't work or worked too well that I would have a back-up in place without having to go back under general anesthia - I have sleep apnea and GERD so I have to be intibated with fiber optic to protect my airway. I will not have to self cath.

          He also tells me that I can use a valve on the cath so that I don't have to use a leg bag. MOST IMPORTANTLY I WILL ONLY HAVE TO EMTY BLADDER THREE TIMES A DAY!

          I WOULD BE INTERESTED IN HEARING FROM ANYONE WHO HAS A SUPRAPUBLIC.

          Betty

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