What do you wish you had known before living with a stoma?

I could sum it up in 4 words."Its no big deal"

Kath

Hi Katz51,

Thank you for sharing and starting the conversation.  It's great reassurance to hear!

Do you have any memories of any specific questions you wish you'd had the answers to early in your diagnosis?

I wish I'd known about this forum.

At diagnosis I was advised that I might need a stoma but a few days before the op I was told that it was unlikely. Because of this I wasn't referred to a stoma nurse beforehand. Services at that point were at a crossroads as the stoma nurse (there was only 1) was retiring imminently and the new appointee hadn't yet started which meant that there wasn't one in situ during the week of my op. I didn't even have a leaflet for information when I was discharged.

As this was during covid it actually took until 4 months post op before I had the one and only face to face appointment with a stoma nurse (there was limited phone contact though). I ended up doing lots of problem solving (for leaks) by myself - requesting samples, talking to suppliers etc.

This forum has been so useful in the intervening years and, as I know quite a few folks who've been diagnosed with different cancers themselves, I always point them in the direction of the Macmillan forums.

Thank you for sharing BlueBlue 

We are glad you found our Community and it has been a source of support for you. I am sure others reading this discussion thread will find your words reassuring and comforting to know they aren’t alone and there is a kind Community in this forum..

I wish I had known more about how supplies are ordered.There was confusion between the two hospitals at the start meaning I ended up very short of bags.My local hospital stoma dept who arranged the prescription did send out some as an emergency.It was stressful though especially as I had leaks to begin with.I don’t have any complaints about living with a urostomy it has improved my quality of life,
Jane 

I had my stoma well over 13 14 years now yeah Katz51 got it rite deal with it because its life now . and i`m still learning new things with my sid stoma lol, and yes i talk to many people about stoma and i tell you now everyone not the same , yes i talk to people on one to one have done for many years from this site , Macmillan . we had a gruop called whatnow on here, but people went too fb etc . but i still talk to this day to others its a bond we have. i was reg on here very long time ago now i had to reg wtf, anyway im not on ere much if any of wonna chat bout stoma`s mail me ....

I agree that having a stoma isn't a big deal but having good stoma nurses in hospital and at home has been a life-saver to get to this point. 

Like everything else there is a knack to it and to learning how to make it stick. I think every hospital should give us a booklet to refer to (mentioning this forum of course) with tips to help when you are sitting on the stairs crying because the bloody thing won't stick and someone said 'try a hairdryer'. 

Maybe I'll write one, one day. 

Final point - we should all have a list of exercises (plus a video or online access) to strengthen our abdomen after surgery. I had some about exercises for getting ready for the op and some for the days in hospital after the op. But, even though I had done 20 years of Pilates I have still found it hard to confidently get back to doing even easy routines.

By the way a woman called Sarah Russell has been working on this and recently published some recommendations for post stoma exercise: EXPASS, for health care, medical and exercise professionals under the Association of Stoma Care Nurses (ASCN).

They are on the ASCN website. I shall forward her email to you Megan giving links.

All the best,

Latestart

Hi Winkers,

I heard on a Urostomy Association Zoom last night that Coloplast can get an order and have the stuff delivered within 3 days. Fittleworth are currently managing 2 weeks (and that's better than it has been.)

Food for thought?

All the best,

Latestart 

You did amazingly well to cope with your stoma without much support ! 

I was discharged with little support , i hadnt changed my bag and had accidents / leaks .

I got home within hours ( weekend ), bag leaked and i struggled to get a seal was up through the night in a mess .

 Called the ward , numeorus times ( I knew they wanted my bed so i obliged ) i should have stayed .

MONDAY  i arranged to collect some seals ( extra) this helped .

I am obese so i really struggled to change and clean and maintain balance and endurance i know have to sit .

Community team did come out during that same week and helped -  gave me convex bags which really helped which i still use .

So well done 

Hi Latestart 

I use Respond for my supplies, going through Nottinghamshire Appliance Management services to place my order, and they send the script to the gp. The standard turnaround time for me from placing my order to receiving delivery has always been 3 days max. I used Fittleworths when I started out with stomas-not too bad, and have also used Bullens-wouldn’t recommend. Two weeks seems a very long time!

Sarah xx