Stoma

Do you have a colostomy or iliostomy ? I am sure if you clarify then people will pop on with their experiences as they use different bags and changing schemes.

Kath

Hi Dave

Two weeks and you’re thinking way ahead of where I was at your stage  After two weeks my stoma was flat and I was still trying to sort her out.

Good on you.

I am living my life better than before my operation, I was rectal and very anxious before I got my stoma. 

When I went out I took all the necessary gear I needed and planned ahead of the what ifs.
Ten months on I haven’t used the spares.

In the early days I had a rolled bag from my suppliers and packed all I needed and carried  it about . I went places I knew and felt comfortable where the toilets were etc. 

Now the people I socialise with know I have an ileostomy so every two hours I go to the toilet, I use the toilets the same as I did before and have a system that works for me.There’s no problem. I know how my stoma works most of the time and go with it. 

I eat in restaurants, stayed away six weeks after my op and have taken a couple of plane trips abroad. 
I started with what I would think of as safe places and people.
Once you get the confidence and your stoma is settled there’s no stopping you 

Thanks for the reply, believe me I'm.not confident at all. I have not got a clue when my stoma is or isn't going to be active, I put a new one on before bed and then I'm awake most of the night as soon as I'm aware there is something there due to past leaks, I can not think of a pub or restaurant where I know I could place my doggy bag should I need to change, just worried about it all moving forward. Think.my next move is to eat the bare minimum

Sounds as though yours is a colostomy if you change bags rather than empty like Artsie and me.If so all I can advise is that most places have some sort of closed rubbish bin tio use.after all you use the ordinary bin at home.

When away in a cottage with only a waste paper bin(which I didnt feel appropriate)I did once double bag my stuff and take it with me in the car until I spotted a doggy waste bin in a lay by.

Im lucky as I only change bags every other day so can usually work something out.

All the best and trust me it does get easier

Kath

By the way do you have a radar key to access disabled toilets?plenty of facilities available there.

Hi Dave

You are very soon out of surgery, and things will get easier as you become more practised with your stoma. After more than 2 years I still don’t know when my colostomy will be active but eating the bare minimum is absolutely not the answer for me anyway-it still goes if it wants to! I don’t have an issue with changing my bag in the loo when I’m out if I need to. 

I use a disabled access loo as there is more space, and have always found there to be a bin to dispose of my bagged items. Please don’t let a stoma dictate what you want to do!

Sarah xx

Colostomy Kath, thank you forbthe reply, although I don't enjoy it I'm managing to change bags ok, it's just that I'm not sure what and where I would end up putting the waste, on the build up to the op I was consuming A lot of alcohol and noticing that most places I drink had no facilities to dispose of waste. (Not that I'm planning on continuing to consume copious amounts of alcohol as I'm not) Even if I were to attempt to empty bags rather than change conditions from what I have seen so far are not ideal.in.public places. 

All in all It would be easier for me if I could reasonably predict the movement, but at the moment there is just no pattern to the movements. 

I bought a stoma waist band which helps with my consciousness of people being able to see the stoma bag but after seeing how quickly the bag could fill up dare not use it as I'm certain it would be to tight for a full bag. Just so many issues but did only have the op on the 13th, really do appreciate your views though  thank you for taking the time to respond

Thanks so.much for your reply Sarah, only had op on 13th hoping that a pattern will develop as I'm.not sleeping well at the moment. I used to play golf but would be worried about going out anytime soon not knowing when I'm going to need to change, appreciate you taking the time to reply anyway thank you so much

Dave 

You are doing really well and it’s such early days. It will settle and you will forget it’s there. If you have output that’s a great start it’s showing that it’s working well. 
The stoma takes six weeks at least to form. Mine was flat and the nurses gave me convex bags at two weeks which encouraged the stoma to protrude and manage to get the output in the bag rather than the outside of it causing leaks. 
Keep a food diary that helps. 

At your stage in the process, so soon after surgery, I was not able to go out anywhere but I had the same worries about needing to change my bags if I did go out (I have a colostomy and a urostomy). 

I read someone saying recently “don’t borrow trouble” which stuck with me. Try not to worry in advance about something that might be an issue, because it actually might not! 

I have changed my bags in many public loos (radar key handy for the disabled ones) and even in the loo on a plane. I stay in hotels, and I eat out. I cannot predict what either of my stomas may do, but I’m always prepared for worst case scenario with supplies to hand and a change of clothes. 

You gain confidence by facing your fears and just going for it! I was worried last month about the long journey to the Maldives, but I really wanted to go, so I did. And I had no problems at all. 

Your stoma will still be settling down, but once you get used to it you’ll become a dab hand at quick changes and it will become an everyday part of life for you I hope, as it has for me. Take it easy for now, you have a lot of recovering to do, and try not to think too far ahead or overthink about what might be a problem. 

Sarah xx

Hello Dave,

I had a colostomy about 15 months ago.

As Artsie has said it takes a while for things to settle down.  I'm sorry to read you have already had experience with leaks.  Of course this will have dented your self-confidence, and it's not as it should be.

Do you have a stoma nurse?  Some people on this forum do, others don't.  If you do I suggest you get in touch and ask to have your changing routine reviewed in case you are unwittingly compromising the adhesive.  They could also advise on different shapes, sizes and brands of pouch.

If you don't, do ask away on here as we can tell you what works for us and what doesn't.

I'm also picking up on your remarks about changing away from home.  The first thing to say is that reconnaissance is key - ideally before or on arrival.  I'm pleased to say that most ladies don't realise what hell-holes pub gents' often are, or become during the session.  I agree, quite unsuitable for a lot of reasons - a 'doggy bag' left there would improve many of them.  Restaurants are generally OK; in either place the disabled loo is best. (It surprised me to find that lots of pubs have them, often locked other than by RADAR, but available on request  It's no big deal, most bar staff will be quite discreet as soon as they hear 'disabled' and take comfort that they may not realise at first that you are asking for yourself.)

As regards bagging I knot the litlle black 'doggy bags' and put them in 'Hero' waste-paper-bin liners bought from Tesco.  I carry a couple in my dolly bag so if I have to change when I'm out they can be double-bagged immediately.  So far I have had to this once, the restaurant (Savile Garden) has an excellent disabled loo with disposal facilities - but I still double-bagged.  For hotels I also take a bin-liner of the sort I use to put the Hero bags in before putting them in our wheelie bin (local concil guidance).  If there is no suitable place to leave the bin-liner (housekeeping will often help) it can go in the boot until we find somewhere.

Cheers,  Roy