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Go Back   Interstitial Cystitis (ICN) Support Forum > Treatments For End Stage Interstitial Cystitis > Bladder Removal
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Old 01-25-2006, 05:59 PM   #1
Kara29
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Smile Catheter Care for all of us! Plus Medic Alert Information!

TO ALL CATHETER USERS, HERE IS SOME HELPFUL INFORMATION:

I wash my catheters with a special germicide with warm or hot water, as the information describes below. I wash mine before and after each use just like . When I am done using it I put it on a clean dry surface lined with clean dry paper towels and I also lay a clean dry paper towel over the catheter to prevent germs and bacteria from growing. When I leave the house I bring 3 clean, dry catheters, with me that I coil up and wrap into a paper towel. I also bring a small bottle of my germicide to wash my catheters wherever I may be. In my purse, I also bring hand sanitizer which I use if I have no way of washing my hands. I also use buy, and bring, in my purse or pocket, Benalkonium ChlorideTowelettes Antiseptic/Germicide. You can get these towelettes individually packaged at most drugs stores but you may have to ask if they have them. I would ask the pharmacist. The come in tiny sqaure packets like you see when you eat lobster at a restaurant. You DON't want to use anything that has Alcohol in it at all! When in a public restroom, I use the clean catheters. Sometimes I will take one of those antiseptic wipes and run it up and down the catheter, if I don't actually wash the catheter with the germicide first. I usually don't do this in public restrooms b/c I am weary about the cleanliness of them, so I try to use up the catheters I have already cleaned. I also use the antispetic wipes to wipe front to back before I insert the catheter. When I am done using my catheter, I put it back into the paper towel and put it in a separate part of my purse just for dirty catheters. I am not fond of washing my catheters in public restrooms because they are very long, about 16 inches long and pretty large, orange, and rubber, so they are VERY visable to strangers and I don't want any questions. I keep a few catheters at my mom's house, my Grandmohter,s House, My Car in a few different spots, and at any other place I spend a lot of time. When I get home I wash them all and let them air dry. My husband and I don't camp but I am sure I would find a way to do all of this in a clean manner as well. If you have the kind of catheters that can coil up, you can wrap them in clean, dry paper towel, and slip them into your pocket. You can also slip one of those antiseptic/germicide square packages into your pocket if you are not carrying purse that day or night. Or if you don't carry a purse.

The information below comes from: http://blcwebcafe.org/posthospitalsurvivalguide.asp

"Patients also find their own way to manage their catheters given their life styles, however. People may do different things depending on whether they are at home, at work, in a well-equipped public washroom or on the road. Some people carry a day’s supply of catheters with them, use and rinse them, and then store the used ones in a plastic zip-lock bag until they can wash everything thoroughly in the evening at home. If you choose this method, be sure not to confuse the used with the fresh catheters. Other people find that they just carry a few with them, and can wash each after use and store it properly, coiled in a clean paper towel, ready for the next voiding.

There are many different ways to wash catheters, but the main idea is clean out the urine and any mucus with hot soapy water, and to dry and store it in such a way that bacterial growth is discouraged. One method is to run a stream of hot water down into the catheter, then put a squirt of liquid soap into the bell, and then bring the tip into the bell, into the concentrated soap solution, like a snake eating its tail; stir it around, then rub soap along the outside along the length of the catheter, then rinse the outside and then the inside from both ends, into the bell first, then back from the eyes. Inspect it to make sure there is no trapped mucus. Dry the outside with a clean paper towel and then, firmly holding the catheter near the eyes, at arm’s length, spin it fast like a helicopter rotor to remove the water from the inside. If you are away from home, after drying the outside with clean paper towel and spinning it, coil it in a clean dry paper towel, and place in your pocket pouch or other catheter kit holder. If you are at home, you can just let it air dry in the medicine cabinet or some other clean private area. Unless they are fully dry, storage in sealed plastic bags may facilitate bacteria growth."

I hope some of this helps any of you that may be catheterizing for any reason!

It is imperative for IC patients that need to catheterize to have a Medical Alert Bracelet! It's not nice to imagine anything bad happening to us, but if it does this bracelet will save our lives for sure. Please wear a medic alert bracelet at all times. When you ask for the bracelet you can ask for it to say:

"My stoma or neobladder is a continent urinary diversion. Catheterize every four to six hours to eliminate urine."

You can get them from anywhere but this is where I got the information:

Medic Alert Foundation
P.O. Box 1009
Turlock, CA, 95381-11009.

Telephone number: 1-800-ID ALERT or 1-800-432-5378

Love and Hugs,

Kara
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TO VIEW MY CURRENT AND ONGOING VIDEO DIARY OF MY PUDENDAL NERVE DECOMPERSSION OPERATION AND RECOVERY, YOU CAN VISIT My Facebook Page:
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You can also view my CURRENT PHOTO ALBUMS and some other secrets about me. Once you sign up, I'll add you as a friend if you mention you are from the ICN. It's FREE

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)

Unrelated to my Indiana Pouch and Urethrectomy, which were very successful and have improved my quality of life to a much better degree, I’ve also been diagnosed with a very painful condition known as Pudendal Nerve Entrapment, with Vestibulodynia. It's a very poorly understood condition that could have been treated years ago had we known what it was. To learn more about PNE, symptoms, diagnosis, causes, and treatments feel free to visit: [b]http://www.pudendalhelp.com/home.html

"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/

Last edited by Kara29; 01-25-2006 at 06:37 PM.
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Old 01-26-2006, 04:23 AM   #2
Judith56
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Just wanted to add that on the medic alert bracelet it is VERY important to say what size catheter you use. You can damage the tract/opening by introducing a catheter that is too large! I was told NEVER to use a catheter in mine that is larger than 14F. If you have latex allergy that is also important to state as there are latex catheters out there. Judith
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Old 02-06-2006, 11:53 PM   #3
bellaluna05
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I had to start only using my catheters only once and throwing them away. I have no idea how I will pay for this for the rest of my life but I went from never having a bladder infection to having a constant infection ever since I had to start catheterizing. I washed my catheters extremely well too, I can't figure out what I was doing wrong. Right now I cath my urethra every half hour to every two hours so maybe that is why. I can use the little 6 inch catheters right now which I much prefer to the long ones but after I have surgery I will have to switch to a longer one, I am really unhappy about that. Can you guys please tell me which kinds you use, what length does it have to be in order to reach your pouches? I also have a latex sensitivity ofcourse, which makes buying the catheters so much harder. I would really like to be using a foley catheter untill my surgery which is now two months from now but I have had a bad reaction to every single one I have tried, I just can't seem to have constant contact with any of the materials, I even tried silicone ones, I don't know what else to try. Any sugestions?
Thank you!!!
Lara
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Old 02-07-2006, 05:55 AM   #4
ICNDonna
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My husband and I both wear Medic Alert bracelets from the Turlock California firm. The bracelets contain a phone number that can be called if you're in an accident or for any reason aren't able to communicate with medics. They keep on file such information as your doctor's name and phone number, next of kin, your medications, etc. It's saved a lot of lives.

Donna
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Old 02-07-2006, 09:38 AM   #5
Judith56
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Lara, I use the catheters made by Mentor . Mine are 16" which is what I need to get into the pouch as the tract that goes into it is long. It has to be this way so that it is harder for bacteria to get in.I am not sure what it is made from, though it is a clear plastic and stiff. It also has a curved end on it so that it makes it easier for me to get it into the pouch. Most people can use the red rubber catheters, but they are too soft for me. Do bear in mind that once you have the surgery you will not need to cath so often. Some catheters you can even sterilize in the microwave. I was at one time storing my catheters in antibiotic solution like Betadine on the suggestion of my ET nurse. Have you spoken to an ET nurse yet? That is a nurse who specializes in taking care of patients with ostomies. She may have some helpful suggestions. I hope the next two months go quickly for you. I know there are resources out there for people who have no insurance to help pay for supplies. Judith
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Old 02-08-2006, 02:25 AM   #6
Kara29
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Lara, try calling a few places

Lara,

If you Doctor or Nurse can't call for you, you can make some phone calls to see which places carry allergy free catheters. Some places do. Tell them what types of catheters you have tried and see if they can order you something special. But check with the Doctor first to find out which kind you will be needing to use and how long it needs to be.

Here are some sites that you can call: http://www.bardmedical.com/urology/urethraltour.html

http://woundcareshop.safeshopper.com/356/cat356.htm?879

Those are the only big suppliers I know of. Maybe some of the other ladies and gentlemen on here know of any others to call.

You'll find one, it just takes time and trial and error.

We're still all here for you as you go through all of this!

HUGS,

Kara
__________________
TO VIEW MY CURRENT AND ONGOING VIDEO DIARY OF MY PUDENDAL NERVE DECOMPERSSION OPERATION AND RECOVERY, YOU CAN VISIT My Facebook Page:
http://www.facebook.com/profile.php?id=1158566812



You can also view my CURRENT PHOTO ALBUMS and some other secrets about me. Once you sign up, I'll add you as a friend if you mention you are from the ICN. It's FREE

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)

Unrelated to my Indiana Pouch and Urethrectomy, which were very successful and have improved my quality of life to a much better degree, I’ve also been diagnosed with a very painful condition known as Pudendal Nerve Entrapment, with Vestibulodynia. It's a very poorly understood condition that could have been treated years ago had we known what it was. To learn more about PNE, symptoms, diagnosis, causes, and treatments feel free to visit: [b]http://www.pudendalhelp.com/home.html

"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/
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Old 02-10-2006, 08:47 AM   #7
Judith56
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One of the biggest medical supply places is Edgepark Medical, there is also the Continent ostomy store. If you go to www.ostomates.org you will find a wealth of info on that site. There is a list of all suppliers in the US as well as the companies who make them.
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Old 02-10-2006, 09:29 AM   #8
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I have a medical alert saying that I can't have mri's because the sacral nerve stimulator.
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Old 02-11-2006, 10:19 AM   #9
IcyAngel23
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Kara29-

Have you ever tried Lo-Fric caths.? They are single use and are painless. I use them and I love them. All you need is a little water to put inside the pouch make it slippery. Lo-Fric is a sponsor of this website so if you go to the homepage you can learn more about it. They also will send you out free samples if you call them or fill out the form on the page. it mabe hard to find but if you search you will find the form. Good Luck to you. Just a thought since you use caths. everyday.
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Old 02-12-2006, 06:04 AM   #10
blackcat25
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Another one to try is the coloplast speedicath - this is what I was recommended to use. They're very compact one use catheters and they come in a plastic container with sterile water inside. I can give you a UK web address for them but I'm not sure if they deliver to the US.
Try www.coloplast.co.uk
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