Living with stoma bag

[Supermary]

Hi

This past week during OV IV cancer debulking I was given an iliostomy

My surgery was a cancer removal success “visually” HOORAY !!! and the stoma is REVERSIBLE

Overall doing Ok just working on getting stoma output regulated

I have had three chemos and have three more to go so either at end of third chemo or between chemo session 2 and 3 Doctor said it will be reversed

Althoug I was prepared for the debulking I wasn’t for the iliostomy , this is all so new and scary to me -and yucky

I get released from hospital today

I have learned to empty the bag and have helped change to bag . Stoma nurse will visit also initially

Really what I need help with is the everyday living stuff like :

What are the best bags? Controlling odor?

How do you disguise it in clothing and is there a way to get it so it doesn’t feel like it’s lying on your leg?

As I am just weaning off the pain meds I haven’t joined any Ostomy support groups yet but plan to

Any information is really appreciated

Margaret

[basilbasil]

Hi Mary,

I was in a very similar position to you a couple of years ago. I've since had the reversal and probably still getting used to it.

As for the stoma, there will be virtually no odour for people around you to notice, if it is correctly fitted and with no leaks.

You have got to give yourself a huge pat on the back as you have come a long way in a very short time.

You will be absolutely fine in the end, just remember that when it all seems to be going all wrong it's only temporary and pretty soon it will be a lot better for you.

If your output is loose try taking three loperamide tablets to slow the digestive tract right down. I also found rice and chips were quite good also.

I'm sure someone else will be along shortly to offer their personal advice. Good luck and all the best for the future.

[kimmo]

Hello Margaret,

Sorry to hear of your journey, but at least your stoma is reversible. Mine wasn’t and I’ve had it now for over 10 years. I remember all too clearly my reaction when I came off the ventilator to find it!

The hospital gave me some bags and literature to keep me going and my stomach nurse was excellent. Is your stoma concave or does it stick out a lot as there are different types of bags! Your stoma nurse will be able to help here. I use Coloplast Sensura which are extremely comfortable and grey in colour. Grey can’t be seen under lighter colours. If you search ileostomy bag suppliers online, various ones will come up. Usually you can request samples. It took me several attempts before I found the correct one. When your bags are delivered they usually come with wipes, odour seals and disposal bags. Mine do.

Re clothing, initially I bought loose jumpers which covered it! Now I am far more confident.

Sleeping after my op was a nightmare to be honest as I always slept on my side. Mine was an emergency op and I lost my colon and large intestine, so it was very uncomfortable. In time it just became part of me and I don’t notice it anymore.

If you’ve any further questions, please message me.

Kim x