WHAT HAPPENS NEXT

Hi Mark,I expect you will get an appointment to see the surgeon.When I had mine he examined the stoma.He explained that it had been a very challenging operation but that he had got clear margins so the area surrounding the tumour contained no cancer cells after biopsy.Jane x

Hi Mark,

I was where you are mid-October 2023, after my brilliant surgeon, Rami Issa, assured me, "let me take that bladder out & you'll be 90% cured", note the term 'cured' here :-) First review with him was a couple of months later, then 6 monthly to date, my next one being in May! I got used to 'bagging' pretty quick, employing a routine of only changing it when I shower, which is now a doozy routine thankfully. I think the longest run of hurdles was getting my stamina back, & returning to 'normal & regular' pooing, which only finally arrived about 4 months ago. Hopefully you're getting used to sleeping through the night now? :-) Well done, you've battled through :-)

Thanks Frostie

They have taken a biopsy and sent it away, I had no idea about this until I enquired last week. It's a waiting game now. Iam 4 weeks post op this week the bowels are working ok just some constipation now and then which I deal with. Wind in my stomach is a problem particularly at night.

The night bag can be a bit of a nightmare iam constantly checking my stoma bag through the night to make sure it's emptying. Last night for some reason it's didn't empty and I got it in time before got any fuller and ended up all over the bed. I've been given this belt to wear at night but it's pretty tight and I don't want it to push against the stoma and stop the pee

The joys of getting used to it all

Thanks 

Mark

Hi Mark, the night bag will work well if you do the following:

• leave some urine in your stoma bag (c 250ml)  before connecting the night bag and make sure it trickles into the night bag before getting into bed (to prevent air blocks).
• When you do get into bed you may have to twist around the end of the stoma bag or the pipe to make sure there is a free flowing channel down to the night bag - the pipe can twist as you lie down and block the flow.
• I use a small cloth  mattress protector on top of the bottom sheet in case of leaks and fold it over the pipe (or use a disposable one - like they use in hospitals) to keep the duvet dry too if it should leak. Learnt from bitter experience on a freezing cold night.
• I find if the stoma bag gets full because of a kink on the way down it wakes me up and I can deal with restarting the flow. Usually by checking for kinks and making sure there's no airlock. I gently move the bag and the pipe up and down to restart the flow, which usually works. I never put the light on and rarely even sit up so I get back to sleep quickly.
• I also make sure there is a drop between the top of the mattress and the night bag. Not a problem at home though when travelling it's important to check.
• I hope this helps. I have improved my technique in the 2 years since my operation so that such difficulties are rare.

Leaks caused by failure of adhesive plus an overfull stoma bag have also become quite rare. But here's what I do to improve stickiness.

• Make sure the wafer (bit that sticks to you) is warm before applying it to your skin. Someone told me to put it next to my skin while preparing everything to change it (especially in cold weather). He says he holds it in his armpit. 
• When applying the bag to the skin, cup your hand over it as you press it onto you because the adhesive works best when it's warm. I hold it for a couple of minutes and that has helped a lot - my hands aren't very warm unlike most stoma nurses I've met who seem to just tap the thing onto one and then remove their hand!

Hope this is useful. It has increased my confidence a lot. Of course one will have leaks, but for me it's usually because I've left it too long to empty the bag. For that, when I remember, I set an alarm on my phone or watch.

All the best,

Latestart

Ah thanks latestart for all that info it's very kind, I'll give it all a go.

Thanks again

Mark

Hi Mark,You will get there,it’s all takes a bit of getting used to at the start.Latestart has given you some useful tips that should help.Jane x

Thanks Jane

Mark

Dear Mark,

Don't worry if it still happens either. Guess what I was doing in the middle of the night? Yes, a full stoma bag and kinks in the tube and connection! Still, got back to sleep quickly thank goodness and it made me smile.

Onwards & downwards,

Latestart

Ah latestart that's funny after us talking about it.

Glad you got back to sleep. I checked about three times last night. The last time was 5 45 so I just got up then.

Many thanks 

Mark

You guys are amazing, I have all this to come but sounds like a ride it or die journey. Glad you're all here xx