Some of the questions I have been asked about my ileostomy and surgery.

I thought people would be freaked about my stoma but actually they’re fascinated!  I’m all for talking about things to make them less scary so always tell people to feel free to chuck questions my way.

 

So here are a few that you may have wanted to ask but felt you shouldn’t:

Can you feel it?

Yes, kinda. If I touch it, my finger feels it, but it doesn’t feel my finger.  (There are no nerves in it)

Does it hurt?

No.  The wound to my core hurts though, they say that will take at least 12 months to heal properly.  So it hurts when I sneeze, cough etc  The wound site where the stoma is healed pretty quickly.

Do you know if you are “going”?

Sometimes I can feel movement, other times I can’t.  Sometimes I will be talking to you and I may stop talking mid sentence if I can really feel it – as it distracts me a little, but I am sure this will change.  Sometimes I don’t have a clue and its the bag filling up that alerts me.  When I am naked and it is active, it’s quite fascinating to watch!

Can I see it?

If you really want to!  I’m happy to flash the bag.  If you want to look at the stoma itself then I would like it to be clean, so you have to catch me after a little tidy up.  Have a look at my insta for more insight.

Can you have sex?

Of course! I didn’t have my fanjo sewn up!  (botty, yes, fanjo, no).  The main challenge has been about my perception of my body now.  My husband has no issue, I was the one who had to get used to the new look.  What I have noticed however is things are a little narrower than they used to be, which I only recently found out can happen with a pan proctocolectomy (and lets not forget I had a total hysterectomy too)

How does your bag stick to you?
Each bag has a wafer, a round circle of sticky material.  There is a hole in it (that the stoma peeks through) and the rest sticks to the skin. 

Do you take your bag off?

I tend to wear a bag per 24 hours – I put a new bag on each morning, part of my daily routine is removing the bag, a nice clean up, then popping a new one on.  Sometimes on a weekend, or when I work from home, I let the skin breathe.  I will sit there for an hour or so, with no bag on.  I just need to have plenty of dry wipes and a mini bin bag to hand in case it wakes up!

How many times do you empty your bag?

I tend to empty 5 times a day.  Night time empties too if I haven’t timed my meals properly.   The bag has a little velcro sealed opening at the bottom.  I simply undo it, drain the contents into a toilet, clean it and close it again. I do miss a satisfying poo!

Where does your bag go when used?

I empty first, then take it off (with some adhesive remover spray so I’m not ripping it off my skin) and it goes into a small plastic bin bag. Yes I hate that I use so much plastic, sorry Mr Attenborough.  I have a special bin for the little bags, and this bin gets lined with deodoriser, though once wrapped in the little bags there is no smell.

Does it smell?

Does your poo smell?  It’s a bit smellier, like you’ve had a rough night poo smell.   I use poo pourri, and air freshener (and a mini perfume in my bag for when out).  I also put tic tacs in my bag, yup really!

Why did you have to have your bottom sewn up?

Well the procedure removed A LOT of plumbing. So now my new botty is out of my tummy.  If I wasn’t sewn up it would be an open wound, and stuff would literally fall out of my arse!  We asked how my surgeon tested it….

Whilst I was open on the table, he poured a jug of water in me.

Tipped me up.

The fact that my toes didn’t get wet meant he did a good job!

Do you still feel like you need to go?

Not really, but I still feel like I want to fart sometimes!

So do you still fart?

Not in the traditional sense.  Gas does come out of the stoma, and it can make a little bubbling noise when it does this sometimes.  The bags have a filters, so air is slowly released, via a charcoal lining, which deodorizes it. The only time it is an issue is night time.  Some foods produce more gas so I avoid these in the evenings.  The simple act of laying down means some of the output sits over the filter so you end up waking up with a little balloon attached to you.

The last popular question I can think of is : have you named it? 

No. My stoma and I are never going to be best friends. This all snuck up on me, I hadn’t been sick for years, I wasn’t greatful for it. So no, I haven’t given it an identity. I do however refer to my stoma bags as my prada bags, and on the odd occasion bling them up! Gotta make light of a shit situation eh…

I’m sure there has been others that I have forgotten, please feel free to ask!