I had intended to write strategies that i had learned as i was writing the blog but it didnt really work out that way! This page is for anyone going through the same sort of situation who needs some tips -mostly things i have learned through trial and error! I'll just jot them down as i think of them...
*Use tissues rather than toilet paper to wipe your stoma when changing bags.I'm not sure why toilet paper doesnt work but it really doesnt!! Tissues hold together better- get 3 or 4 in a bunch,lightly wet them and wipe your stoma til clean.Then get one dry tissue and spread it over the stoma and the surrounding skin and press dry.If the stoma or skin is wet the new bag will not stick.If you use cleaning wipes of any kind (well,any kind that I've used) not only will the new bag not stick but you will have to re wash the skin in order to make it stick! Water works best.
*Expect to be run down and to need extra care AFTER all your treatments have finished.We found that my white cells etc etc all stayed pretty steady during the chemo,operations etc (in fact i remember Manchild and MissK catching several colds that i avoided (clever me!) But during this recovery part of it all - I've had colds,sore throats,mastitis - everything going it seems! I imagine that if you are catheterising and UTI's are fairly common then your body is also always trying to fight that aswell as anything else that may be hanging around.
*to deal with the incontinence i have to wear Hartmann pads day and night - which are incredible and very reassuring but also HUGE!! They work well,i wouldn't be able to have any decent quality of life without them but they really are massive to wear. They used to annoy me alot more than they do now,mostly because i had real trouble finding underware that fitted well enough to hold these hulking great pads in place so that i could get on with life.
I finally discovered BONDS Hiphanger undies (at my local Woolworths supermarket of all places). They come in all sizes and cost $10.95 (NZD). They are fitted (very comfy) with a big wide band of elastic around the top. Definitely not the type of undies that i would've worn before but absolutely perfect for what i need now. If you are in the position of having to wear pads regularly,its worth the time and effort to find underwear that holds everything in place as you need it ...and then buy a whole bunch of them (after all you never know if they are going to go out of production in the future). I've also found that the adhesive on the underside of the pads wears underwear out quicker than usual,so you will need more than you did before.
*Be ORGANISED! You know how Murphy's law works- if something can go wrong at the worst possible moment,it will! So make sure you've got all your bases covered.
I have a kit that i carry with me whenever i leave the house containing stoma bags,catheters,tissues,nappy sacks,medication,wet wipes,lube,pads etc etc etc,. Yes its a bit of a pain to lug it around but the day that we were at a picnic in the middle of nowhere and my stoma decided to empty itself suddenly i was glad i had it!!
It's a weight off to know that no matter what occurs while you are out and about, you can cope with it...because it can be daunting to think of all the potentially embarrassing situations that could happen!
I invested in a couple of really good quality mini-nappy-bag type things which are designed for keeping nappys etc in on short trips out. they hold everything i need,i can take them on their own or carry them in my bag and i like the way they look so i dont feel too daggy and obvious.
*be aware that if you are prone to UTI's then your bladder will hold a lot less than usual before it starts to leak. Try not to get too down about it (i used to but I'm working on it)- try to be extra vigilant and empty it more often,drink more to dilute your urine,and make sure you have the big mama pads on at all times not the smaller ones. There are different juices (Cranberry and Barley too i think) that can help protect the bladder from infection. Try different remedies and see what (if any) work for you.
I'm on very regular antibiotics and it worries me that my body might build up an immunity,I'm still working on finding my own alternative remedies that might help me (fingers crossed I'll find it soon!)
