My main aim for joining this forum was to discuss daily/weekly living with a stoma and various techniques employed to manage. Chances are this has been done before here so apologies if so. I hope by detailing some aspects we may all learn something from it - especially me from others and their techniques or possibly questions.
I had bladder cancer nearly 3 years ago so out came the bladder/prostate combo. A pretty easy decision for me to make. Have a stoma or die very much sooner. That was my first ever time in hospital in over 70 years.
I was initially provided with Dansac convex bags 'cut to size' hole and after a month or two I went to pre-cut 25 mm (1 inch) as my stoma shrank a little. I still use that size.
For several months I had reddish skin over the bag adhesive area. It seemed that I was a little allergic to the adhesive. Eventually and slowly that abated and I have no further skin issues, other than pain from hairs pulling when I remove a bag. I have just a hint of what you ladies experience with waxing.
In the early days I used a spray-on adhesive remover and worked it around the periphery. I quit that yonks ago as unnecessary. I can't remember all of the old practices except that I would always do a bag change laid back in a chair, but never standing. My wife always assisted and still does, but only to place the new bag centrally over the stoma as I can't see to do that without a strategically placed mirror to get an overhead view. I know there is a 'bending the bag' method but I am yet to test it.
(1) What issues remain today I hear you ask?
Firstly, leaks are rare. I think it was 3 in 3 years of which 2 were in bed. Generally related to physical exertion e.g. down on my haunches, say inflating vehicle tyres or changing wheels. I still do a lot of that at home but remain very mindful of my position to minimise stressing/stretching the bag area.
Next issue is the Dansac adhesive squeezing out around the edges of the bag adhesive flange or periphery. I think you guys may call that part the barrier. When that glue sneaks out a couple of millimetres it hardens in the air and forms a sharp edge that can irritate. See pic. All I can do is try to peel off that sticky-out bit. Sometimes when I am working in my shed the very edge of the flange may lift from my skin for say 5 mm towards the stoma and again the glue hardens. Then I use scissors to trim off that hard bit, thus slightly reducing the glued area. Also on skin folds the flange can develop a big crease, much more so than in that pic. Often I've used scissors to cut along that crease about 10 mm and then overlap those two parts to take up the slack and remove the crease. This not to make it look nice. It is to remove that fold hardened by glue and can irritate me.
The last annoying thing is in warm and hot weather. The Dansac bag has a material-like isolating membrane between the plastic bag and my skin. Obviously this is to prevent direct skin/plastic contact and subsequent sweating. This membrane is totally inadequate in hot weather and in no time there is so much sweat between me and the bag you would swear it was a leak. A quick finger wipe/smell always proves no leak. So what I do is get some thick paper hand towel and fold it in half then poke one end into this membrane pocket that is open higher up near the stoma and then fold down the paper between the bag and me. It can't move. Then the paper towel can absorb a lot more moisture.
(2) Daily routine.
Usually around 0500-0530 every morning we flick on the bedroom TV and I hop out to disconnect my Hollister urine night bag. It usually contains 1 to nearly 2 litres and that is full. The bag lives in a bucket as it must as a night bag can leak slightly. I used to have an issue of where to hang the end of the bag hose to prevent it from falling down and urine running out so I fitted an elevated mount on the bucket where I can hook the hose end. See attached pics. I replace the night bag about every 10 days. .
I've always had a weak stomach and never changed a nappy (diaper) in my life despite having 3 kids. The thought of showering without a bag fitted makes me ill. I just couldn't cope with the idea of having an out-of-control stoma sharing my shower, especially the towelling off phase. So I empty my bag in the dunny (loo, toilet, bathroom) before showering. In the shower the bag gets saturated but I don't care. After drying me all over with towels I then pat dry the bag wet membrane with paper towel and complete the process with my wife's hair dryer to ensure everything is dry as a bone. This takes 30 seconds.
Once dressed I empty the night bag into the dunny then take it to the laundry, connect it to the laundry trough tap (faucet) with a matching fitting I made up and force-flush the bag with water whilst shaking it about and when satisfied empty it there. I never use vinegar or any cleansing product. Then I hang the bag outside all day to dry.
Through the day I would drain my Dansac bag around 8 or 10 times. I don't want it too full. The bag has a tap at the bottom and after draining I dry that tap hollow tube with some dunny paper rolled up like a cigarette. I wish someone made these things pre-rolled. I never use the provided tap caps rather than drying as the caps are concave and would always hold some urine when removed.
(3) Bag change routine.
Always done around 0700 in the morning and every third day. I have laid out my equipment the night before. That morning I skip any early drinks to minimise stoma output. After showering and half dressing I put a regular body heat-pack thingie in the nuker (microwave) while I do my final bag empty. Then the new appliance bag is placed between ally (aluminium) foil to prevent it from fogging up as the heat-pack always contains a bit of moisture. This warming process is to soften the appliance adhesive and ensure a quick bond.
I lay back on the bed with my gear beside me. I prefer the laying position (head/shoulders on 2 pillows) to keep my belly horizontal to more readily control any leaks should one occur. I use two adhesive remover wipes. Firstly I pull the bag flange outer edge away from my skin only about 2 cm (3/4 inch) all around the periphery. Then I use the first adhesive wipe to de-glue myself around the edges where often there is a bit of dried glue harder to remove. I do this firmly and safely knowing the stoma is still sealed by the bag centre ring of adhesive.
Next with several pieces of pre-folded hand towel at the ready I peel the bag away completely and plonk paper towel on the stoma whilst I have a quick check at the inner adhesive area looking for potential leak signs. I place the old bag in the nearby collection container. That is merely an old ice-cream container fitted with a small single-use plastic bag. Then I use the second adhesive remover wipe around the inner stoma area to clean that up. Another piece of folded paper towel to assist the cleaning process and using the firm corner of said folded paper to run around close to the stoma removing any glue remnants.
Next I grab a baby-wipe (moist soft paper thingies meant for cleaning babies) and clean the entire appliance skin area and especially the stoma proper. Sometimes I draw a little blood spot if a bit rough. The third piece of folded paper is used flat all over to dry up the baby-wipe dampness then I quickly apply a skin preparation wipe whilst my wife has grabbed the warmed new bag and ready to fit it. The skin prep stuff dries in a few seconds as I keep an eye on the stoma with paper towel ready. My wife then plonks on the new bag carefully aligning it through the transparent plastic. I place a warming hand over it all and give it a minute to stick 100.
(4) A close shave.
An annoying thing about gluing stuff to your body is removing it without pulling on dozens of hairs. This hurts in proportion to the hair length. A pity that body hairs are not like grass and will not grow when covered. So these little mongrels persist and grow everywhere under the bag adhesive area. In the early days my wife would use a razor blade and soap to mow my lawn whilst I remained alert with paper towel on stoma patrol. Then she bought me a very small electric shaver, I think intended for women. It runs on a single AA battery. Now I can use that in one hand whilst towel ready in the other. I very carefully mow quite close to the stoma but mainly around the larger glue area. This mowing is needed about once every 4 bag changes.
(5) To finish off
I use pre-cut single-piece bags from transparent plastic as an aid to accurate visual alignment when fitting, but more so because I want to see what is going on in there. Any signs of blood for example. As the short piece of intestine used to make the stoma thinks it's still in the gut it continues to make mucous and this appears around the stoma mouth looking just like a smoke ring. When it sinks to the bottom of the bag it can sometimes affect the drainage when the tap is opened. It may even block 100. The simple fix is to rotate the tap shut then open it again. This seems to have a shearing action and the blockage is cleared instantly and 100 of the time.
If I find my bag flange (periphery of the adhesive area) has lost some adhesion due physical activity I stick on Dansac X-tra strips. These are like adhesive tape but curved like a banana and cover about one third of the flange circumference.
The adhesive remover wipes and skin prep are Smith Nephew but there are other brands. Night bags are Hollister. None of these brand mentions are endorsements. They are merely what I was trained on by my Stomal Nurse. Chances are there are other brands that do a better job but I'm not game to try them. The old dogs new tricks syndrome.