New Here

Hi Daisy

I am so pleased that you've found you way over to stoma support and I hope you managed to catch my length response over in your first post in new to the community.

We are a very friendly butch all willing to give you lots of advice and tips based on our experiences but please remember that you are you, you're a unique person in your right meaning we are all different and a solution to my problem may not solve yours and by trial and error we will together help you.

If you remember in my other post I invited you to accept my friend request and we can discuss any problems you have at any time.

After this type of surgery our bodies take a while to settle down and you may note dips, creases or scars on your skin all of which does not help your pouch to stick, but we get round this by using stoma paste on the dips and creases and we apply barrier rings around our stomas all to get as near flat skin to help our pouches to adhere well and hopefully lessen the number of leaks.

In preparation for your first outing whether it be the shops, cafe, restaurant or a hospital appointment you should think about putting your emergency change bag together which you take with you every time you leave home.

The minimum your emergency bag should include is

Spare pouch(es) cut to size

Disposal bags

Dry wipes 

Adhesive remover wipes **

Barrier film wipes **

Base plate extenders (if you use them) **

Spare underwear

NKS RADAR KEY ☆☆☆

Can't wait toilet card ☆☆☆

Anything else that you think that will make you feel more comfortable

** manufacturers will throw samples at you if you ask

☆☆☆ from you supplies company.

The goods news many of us carry our emergency bag everywhere we go and very few actually use it. It maybe should be called "my piece of mind bag"

My offer is genuine I am here to chat to, advise and help and give you support for as long as you need it.

Just a little bit of asking questions, in this group we believe the following:

There is no such thing as trivial, silly or daft question except the one never asked, if you have something bothering you or bouncing around in your head, please ask me let's get the answer and give you peace of mind.

You are not alone in this journey.

Once you have your meeting with your on Oncologist to discuss your results and treatments we can start to introduce you to the other groups where the members will only be too willing to listen to you and share their experiences with you.

Keep on coming back as often as you like we will always be pleased to see you

Ian

Thank you Ian.

Stoma nurse should be ringing me tomorrow for an appointment at the stoma clinic.   Two questions, what base plate extenders, and how do I get a can't wait toilet card.  I realise it's very early days and the leaking bags sent me into a panic.  Feeling better about it now this one has lasted.  Having nausea today too but it's so good to be home after such a long time.

Hi Daisy 

Thanks for asking your questions

Can't wait toilet card Macmillans Can't wait toilet cards if you click on the green text it will open up the page that will allow you to order one. You will need to set up account, to do this just enter your same login details that you use for the community site. Order and confirm order and you will receipt a plastic can't wait card and two key fobs.

Your first supplies from your stoma delivery company should include one in your welcome pack but in my opinion you can never have too many of them.

Every so often I update the list of places that you can't use disabled toilets, as an ostomate you are entitled to use them without problem as Not all Disabilities are Visible. My list includes pubs, restaurants, fast food outlets and department stores and supermarkets.

Base Plate flange extenders.

These are banana shaped plasters that you place over the pouch flange to extend the width of the pouch flange and can give a little more security against leakages.

They can look like this

The stoma clinic nurse should be able to give you samples, if you want to send off for some let me know and I will you over some links.

Ian 

Thank you, I recognise those now as they used them in the hospital to try to stop the leaking but didn't give me any to come home.  I've seen the stoma nurse this afternoon and she's given me some different bags due to the shape of my stoma.  She will ring me on Monday.  I've sent off for the card, as you say can't have too many.

I had to get a taxi and go to the hospital by myself as I couldn't get a lift and can't drive yet, doing that has given my confidence a bit of a boost.

Hi

I just wanted to say hello and I’m glad Ian has been able to give you some useful information and that you are starting to get out and about (if only to a hospital appointment!).

There is so much information and friendship on this site that will be helpful to you, especially as it looks as if you’ll have further treatment to contend with.

You can read about my cancer “journey” if you click on my profile but after a terrible year last year (2018) I’m left with a permanent colostomy. In May this year I was fortunate enough to start irrigating, which has made a huge difference to my quality of life. 

I had ileus last year too, and it was horrible! I’ve never been so sick in my life and I lost 3/4 stone.  But I’ve put back all the weight (and a bit more now too ). I don’t worry about being a few pounds overweight now though.  I don’t sweat the small stuff any more, as they say.

The very best of luck to you in your recovery.  Very early days so take it easy.

Liz x

Hi , you’ve had plenty of good advice so I don’t really have anything much to add except to say that I too had trouble with leaks but thankfully my stoma nurse gave me a bag that fitted well - a convex one - that never leaked in the 7 months I had it. You can read my journey in my profile. I no longer have an Ileostomy but am happy to answer any questions you may have. Check out my recipes posted on the Community blog under Dining with an Ostomate. x 

Thank you Jersey Lily, the one the stoma nurse put on yesterday has leaked this morning.  The ones she gave me were raised rather than flat for a better fit so I had hopes but am now just sitting here crying.  Due to be reversed 12 weeks after surgery (22nd October) because of Ileus that was changed to 6 weeks, now it's all working not sure if that has changed.  Waiting for appointment.

Ian,

I'm just sending this to thank you for the information contained in this reply. 

I've not used Base Flange Extenders but after seeing the ones available I'll be contacting my stoma nurse when I can get an appointment. 

Thanks also for the items which go to make up an emergency bag. I have a few items add to the one I have at this time. 

I already have a RADAR key as I am disabled & use a wheelchair but I think the items in your emergency bag should be the minimum content to help prevent accident or clean up after having one.

I'm 69 and only found out that I had Metastatic Colorectal Cancer earlier this year.

Thank you again for imparting your knowledge and advise to fellow sufferers.