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Old 03-11-2014, 11:40 PM   #1
SueM in MN
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A new world for us - WDW with urinary catheterization

Some of you may have noticed I have not been posting much in the last 6 weeks or so. I've been reading, but not time to post much.

The reason is that my youngest DD had elective surgery on February 6 to create a Mitroffanoff. This procedure uses the appendix to make a passage thru the abdomen into the bladder.
She didn't have her surgery at Children's, but they have a nice explanation.
http://www.childrensmn.org/manuals/pfs/surg/033418.pdf

She was in the hospital for a week, with one of us with her 24 hours a day (since she can't talk, we wanted to make sure one of us was there to communicate.
She had a catheter in the Mittofanoff and one in the urethra for 1 m
onth.
Everything was removed yesterday and we are slowly becoming proficient at our new way of life, which right now includes a catheter every 3-4 hours.

So, give me your best hints for touring.
- I know we can go to First Aid, but were else do you cath?
- what do you do for a 'work surface if you use the Companion or regular restrooms?
- how do you manage supplies?

Thanks in advance
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Old 03-12-2014, 11:34 AM   #2
cantwaittoseemickey
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Our son has a mitrofanoff. What will your schedule be while you are there? I know he started out every 2 hours then worked his way up to every 4 hours. Can you cath her mitrofanoff with her sitting in her wheelchair? Or take something to lay her on on the floor?

We have his suppllies in a backpack. I make indivual cath kits and put them in a baggie. The bzk wipes, jelly packet and catheter and a pair of gloves. I carry enough for a couple of days so we always have extras in case one gets dropped or something happens. I then put those little baggies in a gallon size baggie in the backpack. I keep all in one kits (the ones that have a bag that he can cath into) in the backpack also so if we can't get to a bathroom he always has something to cath into in an emergency (traffic jam, bathroom taken etc). I keep a small bottle of Sodium Chloride solution (for irrigation) in the backpack as well. I have a Nastalgia bottle from The Container Store that is leak proof) as well as the 60 ml syringes for it in the backpack. His backpack is always stuffed with supplies. I keep it on the back of his wheelchair.
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Old 03-12-2014, 11:51 AM   #3
Michigan
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Mostly my girls cath from the mitrofanoff to the toilet but if not we carry empty water bottles and cath into them. The girls carry their catheters in their back packs. We always try to use the companion bathrooms just so they can all go at once. They have even gone off to a corner with a water bottle in a paper bag lifted their shirt a little stuck the catheter in and done it that way.

If you are coming back down here before we head north on April 20th I can give you some long 14 fr catheters if you need them.
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Old 03-12-2014, 12:54 PM   #4
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I have a Mitroffanoff and love its ease of use. Glad you are over the hump of recovery. That surgery took me off my normal self for over a month. You will find it really easy to use at Disney. I use the catheter with a tube extension (back from my leg bag days) so it reaches down to a toilet. I also do the Ziploc trick by packing everything I need into a gallon size Ziploc and just pulling out one bag at a time (I will admit I might not the poster child for following all the "rules" of use but it is still holding up great after 11 years). I also will save an empty water bottle or two so I can cath straight into a bottle if I need to (which I have done on long airplane flights and side stops while driving when I couldn't find an accessible place). Good luck!!
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Old 03-12-2014, 02:46 PM   #5
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Quote:
Originally Posted by dumbox2 View Post
I have a Mitroffanoff and love its ease of use. Glad you are over the hump of recovery. That surgery took me off my normal self for over a month. You will find it really easy to use at Disney. I use the catheter with a tube extension (back from my leg bag days) so it reaches down to a toilet. I also do the Ziploc trick by packing everything I need into a gallon size Ziploc and just pulling out one bag at a time (I will admit I might not the poster child for following all the "rules" of use but it is still holding up great after 11 years). I also will save an empty water bottle or two so I can cath straight into a bottle if I need to (which I have done on long airplane flights and side stops while driving when I couldn't find an accessible place). Good luck!!
My youngest daughter got her mitrofanoff at the age of 3 so she has had it for 13 years with no problems. Oldest daughter's mitrofanoff is 10 years old and she did need duflex(sp ?) because it leaked but never after that.
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Old 03-12-2014, 08:26 PM   #6
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DW has had the Mitroffanoff for 21 years now, she was the first adult in the Twin Cities to get it. She now uses the male Spedicath compact by Coloplast. The womens is to short to use with a Mitroffanoff. That one comes with the bag already attached to the catheter. Before those came out she used a male length catheter, lube and a 32 oz reusable cup. We go into the companion restrooms and I help her if she needs help. WE use her board attached to her chair as the working surface. By the way she loves having it.
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Old 03-13-2014, 02:48 PM   #7
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No advice to offer, but best wishes for a continued recovery for your DD.
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Old 03-26-2014, 05:30 PM   #8
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You got me smiling, Sue. This is such a different Sue posting. Sue, the mother instead of Sue the healthcare professional.

I've had a mitrofanoff since '08. And simply put? It is pure freedom. I can cath -and yes have done it- right on Mainstreet and nobody has a clue. All comes down to experience (this will grow VERY quickly), confidence, working hygienically* and type of cath.

One major difference can come in material. If reactions and experiences from those who self-cath and/or cath in the professional field I've ran into while in the States or communicating with folks from the States are anything to go on, we use more userfriendly caths. We only use one-time-throw-away caths. They are packed individually, pre-lubed, in one word perfect. Got them with and without bag on them, I use with bag which I then empty out where possible. This gives me the freedom to literally cath everywhere if need be, no bathroom needed. Bag doesn't release oduers, doesn't leak etc. so can be stored until in a place to dump it. Perfect for road trips, concert, disney parks with busy bathrooms etc. I use braun actreen glys caths. Not that many female caths are long enough for a mitrofanoff but I've found them easier than the male ones to use.

I literally only pull of my protective patch (to prevent any bowel slime to get in my clothes), open the tip of the cath protection, slid in tip of cath and slide down protective plastic while inserting down. Cath the urine, pul out cath while letting that protective plastic slide down the cath again so no risk of any touching. Grab a cotton whipe, whipe down the side, patch back on, done. Well, and dump the whipe, urine and bag when in a place to do so.

These systems are so easy for these moments, it could be worth looking into the extra costs for these days to pay out of pocket (we get it covered, multiple usage caths are considered a no-go, so was a bit getting used to hearing those were still around.)

If using multiple usage caths; think about easy ways to carry them around, having your own cleaning alcohol (read; can rinse out properly later) and only do a quick run-through under a water tap while out and about and store it in a one-time-usage-ziploack bag or alike. Use disposable whipes, LOAD easier, since storing them in a ziplock bag you will always have them handy and no need to worry about hygienics (as long as they are in the bag they are safe, dont take them out until using directly and dispose of them then and there).

First times in new situations and heat; have more stuff with you as she might drink more, pee more or less of fill up the bladder more quickly.

The cathing itself is so easy, simply, fast etc. that it is nothing. Really. I've had docs and nurses knowing I had it stand at my bedside while I was cathing, still having no clue I was cathing. My GP knew about it and after months decided to ask me where my mitrofanoff was too be found while treating some wild flesh surrounding it.

As far as irrigation? Did it the first months post op havn't done one since. No problem. Know of a lot of others who do the same. Depends a bit on how much or little bowel mucus will be produced. My bladder wasn't enlarged (got mine due to severe retention and no function of bladder) but also know of others who did have enlargement. For me personally irrigation happend to increase mucus creation. Not worth doing the extra trouble/work.

The beginning was...... weird. Bladder was so irritated I had an "urge" 24/7 while no ability to sense urge anymore. Literally the bladder and nerve system had to get used to it. Had a dip when in first week my cath wouldnt go in smoothly, so back to the 24/7 cath through the mitrofanoff for another 2 weeks to let it rest. Took about 2 or 3 months for my system was used to the change and I was back to normal with regards to peeing as in back to 6 times a day, durations in between I'm used to etc but more freedom.

You'll probably have been doing some research yourself already, but be aware that not all urologists know enough about mitrofanoffs to be the best in the upkeep care of it. Yearly echo of kidneys is smart preventative measure as is regular scoping (sorry, cant remember term right now) after five years since there is a little risk increase for some issues.

Also be aware normal dipstick urinary track test will give wrong results. They will test positive for infection because of the usage of bowel tissue, so culture is needed to get the real picture.

Only negative I've had with it; kidney infections. Never had even the most basic uti, eventhough I 'should' have had them for years, before the op. Afterwards, bingo. Nothing to do with the cathing itself, since I already cathed through the urethra beforehand for years and never an issue, but about 3/4 year post op first on hit me (sure enoug, while at WDW...) and 2 hit soon afterwards. Suspect a reaction on the bowel tissue, so have been using anitbiotics since (was off of them since never any infections) and no problem anymore. I didn't show any sign while still in the uti phase, very little when kidneys would get hit, so always was difficult to decide if anything was going on already, let alone catch it quickly.

Been dehydrated very badly back in 2011 due to stomach issues and cath couldn't enter anymore, mucus was too dry so got a traditional 24/7 cath in. After 3 days, I couldn't get it out, nor could the nurses or ward docs. Turned out it grew in, seen more in dehydrations. Should've turned the cath multiple times a day but my specialist urologist wasn't in those days to inform them. Luckily he was able to get it out, would've been an op otherwise.

For any operation, I make sure to get a traditional cath which I insert myself through the mitrofanoff, since I know my do's and dont's. I've found my system flushes out IV liquids like a mad mad, even a 30 minute surgery is enough to produce around 750ml. I'm off with my producing speed, but urologist always incouraged just putting cath in and not removing until able to keep an eye out on it myself again and either selfcath or oversee someone else doing it. That way if an op ends up running much longer or medical you-know-what hits the fan, I don't run risks with my bladder or damaging mitrofanoff due to overfilling. In those moments there is little attention for something is unimportant as a bladder and very rarely the knowledge to use the mitrofanoff properly. Has paid off on multiple occasions where ops ran long or I ended up crashing out of nowhere.

Having said all of that; it was VERY much worth it. Rewards is much higher in the freedom it gives and overall health improvement. You hopefully will very soon will find the mitrofanoff will give you both more freedom for something as simple but daily as peeing.


* there is a level of difference between hygienics "we" need and you are used to in your job going from one patient to the next, which brings in another level of contaminating from one individual to the next.
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Old 04-12-2014, 12:48 PM   #9
SueM in MN
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Just wanted to say thank you for all the helpful hints and good wishes.

We just got back late yesterday from a 15 day trip to WDW. Everything worked out well and we did great with our 'new reality'.

On the trip down, I just arranged her catheterization schedule to do right before we were boarded on the plane. In my carry on, I had put 3 of the 'all in one' kits with a catheter attached to the collection bag. We did one catheterization on board the plane and no one really noticed a thing. I had a bag to put it in to carry to the bathroom so I could empty it discretely and throw the empty bag in the trash.
It was really nice to get off the plane and not have to make a mad dash to find an unoccupied companion restroom!

We had requested part of her monthly allotment of supplies be delivered to Old Key West, where we were staying. The supplies were received about 2 days before we arrived and were waiting for us in Bell Services.
Between what we brought with and what we ordered, we did end up with more than we needed and brought a bunch home. But, better too much than not enough.

Thanks for the suggestion to pre-make individual kits with everything for one catheterization. We had ordered individual packets of lubricant and cleaning wipes and had everything we needed in one ziplock bag. As I used them up, the empty bag got moved to the bottom of the pile, so the top bags were always ready to use.
The bag I made that I shared pictures of in another post worked brilliantly - there was enough room for a bag of clothes, 4-5 individual kits plus 2 of the self contained catheter plus attached bags.
I think she gets about 14-20 of those per month. I saved them for times when we had no bathroom (like the plane) or times when the bathroom was bad (one of the outlet malls had a filthy bathroom).
I carried a few empty plastic shopping bags for times I needed something held and no surface to put it on. I mostly used the sink flat surfaces after drying and putting a clean paper down.

We made creative use of some of our trash (creative recycling). Because this is all still new and we wanted to make sure she was not getting dehydrated,new needed to measure urine, so after using the flush kits, we used the bottle from the flush kit as a receptacle to catheterize into.
We are not able to reach the toilet easily with the catheter - partly position of her Mittrofanoff and partly her inability to lean closer. We used either the flush bottle or a leg bag we had gotten during her hospital stay. Both were easy to rinse out in the bathroom and store in a ziplock bag for next use.

We set an alarm on our iPhones for every 3-4 hours. The sound called Twinkle worked well - it's loud enough and unusual enough that we could hear it without it blending into background sounds, but not annoying to other people.

All in all, it was great. We are all very happy that we went thru with the surgery. The outcome was wonderful and having it made our vacation better.
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Old 04-12-2014, 01:08 PM   #10
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Sue when you come between Oct and April if she uses 14fr catheter don't worry about not having enough just let me know before hand to be sure I am down here and I can bring your a box.
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Old 04-12-2014, 01:56 PM   #11
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Quote:
Originally Posted by Michigan View Post
Sue when you come between Oct and April if she uses 14fr catheter don't worry about not having enough just let me know before hand to be sure I am down here and I can bring your a box.
Thanks for the offer.
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