How does it work?
I had a sub-total colectomy. So, my entire colon (large intestine) was removed and I was given a stoma. A stoma is essentially my small intestine; that sits about an inch or two out of my stomach into a bag that’s 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. On one hand, colitis only effects the large intestine; an organ I don’t have anymore; so removing it means I don’t suffer from the symptoms of IBD anymore. On the other, colitis is an autoimmune disease; meaning it will stay within the body regardless of the fact my colon was removed. I still have a dampened immune system and struggle to fight off illnesses, as well as getting bouts of fatigue every now and again.
I don’t really know why we 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… The sub-total colectomy is one of potentially 3 surgeries. This all depends on which next stage surgery I decide to do at a later date. See that debate here.
Is the bag on 100% of the time?
Pretty much… I’m only ever bagless for about 5 mins when I change it! [Click here to see my bag change video. Bit of warning, you WILL see my intestine if you watch this] For more on bag-life post-op click here.
How long did you try medication before you went for surgery and would you recommend surgery?
I did aggressive medication therapy for around 11 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. My colitis was very severe and I know a lot of people who get on great with meds but due to my experience surgery gave me my life back.
Does it affect your social life? Is it an inconvenience?
My stoma has 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! As long as I have my ‘leak emergency’ kit with me, I’m good to go.
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…
For more on food + bag-life click here.
Does it smell?
The only times it smells 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 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…
Can you swim?
YES! I used swimming as strength training a few months after surgery. I pop a filter sticker over the filter and then jump on in!