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.
