Need advice about stoma which I have had since January this year

Hi Jennylou

I’m sure our friendly guru will have some special advice, tailored for you. Each of us has a different layout and issues, but I’ve suffered from sore skin and leaks. And what I do now really helps. Perhaps you could adapt this regime for your op scar and navel. 

After cleaning up, I apply cavillon around the stoma. It protects the skin and helps the pouch stick. I apply a Dansac seal round the stoma, moulding it into place to fill in any gaps left by the hole in the pouch. I might also add powder or cream if there’s a sore patch. I use a bag with a large adhesive area round the hole - Salts BD13-75, which improves adhesion. I then apply a ring of Dansac extenders round the pouch for extra security. Finally, I fit a stoma girdle which helps contain leaks if they occur. Finally, I check regularly for good adhesion. Inns emergency, an extra extender will keep me going until I can change the pouch. 

This has greatly reduced the frequency of leaks, although I usually have to drain the pouch a couple of times in the night.

please let us know how you get on...

Thank you so much for this incredibly helpful response, I will give it a go. It's great that there is so much help available on this group

Hi JennyLou  

This is the first time I’ve messaged, I noticed you’re having the same problems I had/occasionally still have. I’ve had my stoma nearly two years.

There were some days I wouldn’t go out because of leaks - I always put my bag on the same so couldn’t understand why sometimes it was ok and others it leaked. Due to this I was getting sore round my stoma, I contacted my stoma nurse and she sent some powder - which healed the area quickly.

i discussed the bag issues with my stoma nurse and I also googled my problem and sent for some samples of different bags and deo/lube. I now use the new bags, filters, deo/lube and cotton wool (as advised in another reply) and I always make sure there’s some air in the bag. 

My bag is much better behaved, although I still have the occasional incident. I love cycling and now feel confident to bike again ( I always take a little bag of supplies - just in case).

I now order pre cut bags from the company along with all my supplies it takes two days as opposed to seven at the chemist.  The company ring me regularly and are always at the end of the phone or email if I need advice. 

I never thought I’d get back on my bike but I have and I biked in New Zealand in March.

Catherine

Hi, I had two more leaks last night, 2am and then again at 4am. Both were 'pancaking'. Can you tell me why the leaks always seem to happen at night? Is it because I sleep on my back and the output has no way to drop into the pouch? I feel like I need to sleep standing up so gravity can do it's stuff?

Thanks

Hi Jenny Lou

I have had my permanent stoma for 2 years now and was always scared to go out to eat as I would have to rush to the toilet, of an evening after a meal I would be running up and down stairs, sometimes I have just finished washing my hands and the bag is full again. Explosions were quite common and I think the force is what was making the pouch the leak.

My stoma nurse suggested irrigation, which I have been doing since March and it has been great, I do it every other day and hardly get any output in the pouch - is this something that you could try, I know it is not suitable for everyone - it has given me my life back

Sorry to hear that.

I sleep on my side now as I find this helps gravity.

I always make sure I have some air in the bag, which helps.

I notice someone has suggested irrigation- I have read about it and those who use it find it a good way of coping, I’ve never tried it - but I would if leaks became persistent 

Catherine

Hello Eclaire55

Just wondered what 'irrigation' is in this context?

Best wishes.

That’s so rotten Jennylou. 

The approach I take was based on trial and error with lots of advice from the wonderful stoma nurses. And although I pancake - yes, all about lack of gravity - leaks very rare now. As well as a pouch with a wider phalange, and hence extra margin for protection, I’ve scaled up to a larger bag - salts BDL13-75L. Then the extenders make it even harder for leaks to make their way out. 

Suggest you speak with your stoma support team and see if they’re willing to adapt your prescription to get these extra protections. 

Having spoken to my stoma nurse they are sending me a trial pack on convex bags which she thinks will help. When I speak to her again I will mention these ideas and see whether she can help. I was blessed last night with no leakage. Possibly because I had positioned my bag at an angle to avoid my belly button area. Possibly because I made every effort to sleep on my sides which I find painful as recently had operations to put metal rods in my femurs as I have metastised breast cancer in my bones.

thank you so much for your help