How does it work?
So they removed my entire colon and my small intestine literally sits about an inch or two out of my stomach into a bag that is stuck to my front! For more info on my surgery click here.
Do you still have Colitis?
This is a tricky one because some say NO and some say YES. My docs made the impression that I don’t anymore – I was assured I won’t flare from now on. I still have my rectal stump while my stoma is temporary, and this is still pretty unhappy, so I guess I do still have it located in that area. To me, it makes sense if I don’t have the organ that colitis effects (the colon and rectum) then how can you have the illness? But I guess it’s up for debate…
I don’t really know why we all name our stoma’s – I guess she’s my new best friend, so it seemed fitting to name her rather than just calling her ‘it’.
Will you have the bag forever?
Possibly… This surgery is one of 3 (potentially 4). Second stage surgery is usually to create a j-pouch, but I do have the option to make Rosie permanent. If I decide to have the j-pouch surgery then I won’t have the bag anymore.
Is the bag on 100% of the time? How often do you change it?
Pretty much… I’m only ever bagless for about 15mins on the days I change it! I started off changing Rosie every day – Practice makes perfect and this got me into a routine pretty quickly – as I’m getting settled into bag life however, I change her every two days. For more on bag-life post-op click here.
How long did you try meds before you went for surgery and would you recommend surgery?
I did aggressive drug therapy for around 18 months before I had to resort to surgery. I tried seven different drugs, from pills, to enemas and IV therapy in an attempt at getting my body to chill out, but none of them made any difference!
YES! I totally recommend the surgery! It’s given me my life back.
Does it affect your social life? Is it an inconvenience?
My stoma has actually given me a social life – I can leave the house without any worries! And it isn’t so much of an inconvenience, I just have to make sure I don’t forget she’s there! I have to make sure I have my little ‘leak emergency’ kit with me but stoma life is a million times better than colitis life.
Are you afraid to tell new people about it? Is it ok to ask about it?
I guess it depends the situation I’m in – I’m so open about it all online but in person it’s slightly different. But I’m not ashamed of it – I’m actually really proud of it – so I’m happy to talk about it with anyone who wants to know! Making the world understand it better starts with awareness so I’m more than happy to talk about it if people are interested!
Do you tailor your clothes to suit Rosie the stoma?
No, not really! I mostly wear what I used to pre-bag! Even cheap Primark leggings hide her pretty well and the only thing that I had to throw out were a pair of mid-rise jeans that cut across the bag awkwardly. Thank god for high waisted fashion making a comeback! But if you’re new to ostomy life and are looking for help my advice is, it’s all about being comfortable, but don’t be afraid to wear what you used to!
Do you have a restricted diet?
The best thing about bag-life is being able to eat my mother out of house and home! I’ve found a few NO’s (broccoli, whole tomatoes, a whole bag of nuts…) but to be honest it’s all trial and error. Some things will be fine for me and not for others… But I can eat pretty much EVERYTHING and it’s glorious! For more on food + bag-life click here.
Can you go swimming?
Yes! I was so nervous to go swimming first time; thinking the bag would fall off or something ridiculous! But water actually makes the backing of the bag tackier and stick better to your skin while you swim. I swim once a week and so far Ive only had funny looks from kids probably wondering what the hell is on my stomach… haha.
Does it smell?
This is a question I get asked a lot actually… And no, thankfully the only times it does is when I empty it and take it off. There are filters within the bag to make sure it doesn’t smell. But if you’re worried about it, you can get accessories that help this. Or I use a little aromatherapy oil in the bottom of the bag and while I’m changing so the room smells like a spa and not a public loo…