So my aussie friend Laura over at stomalicious has held an Orientation for Ostomates on her instagram. This is by ostomates for ostomates but is helping raise awareness for those who maybe getting a stoma at some point.
I decided to obviously take part on Instagram itself but I spoke to Laura and said I would also put all my answers into a blog post. I’m going to keep my answers as if I was answering the questions for that day. Also it now looks like this post maybe finished in parts! There is a lot to read and even I find it hard to go through!
When did you have your ostomy surgery? Why did you have surgery? Name of procedure? What sort of ostomy do you have? How many surgeries have you had?
I had my ostomy surgery in April 2016. I had the surgery due to ulcerative colitis returning in my ileo anal pouch. I had an end ileostomy. I have had two surgeries one was a pan procolectomy to remove my large bowel and create a pouch out of my small bowel.
What are your tips/hints on avoiding wind?
I haven’t really got any yet! I’m still learning myself. I guess though not eating straight before bed helps and I am trying peppermint capsules. So far they just make my poo smell less bad! Also limiting food and drink that are known to produce gas too.
How big is your stoma? Did it shrink much after surgery?
My stoma decided to change shape. It’s now oval it’s 25mm on the sides and 30mm on the top and bottom. It was 25mm round before that so it shrank by about 5mm.
What’s your bag of choice?
So I’m currently using a Dansac Novalife convex bag. It’s pretty good minus the the opening I find it a bit scratchy, however they seem to sit better against my skin with less obvious bag lines. I’ve tried the Coloplast Sensura Mio but I find its quite awkward to keep clean. Even if I use wet wipes as I fold it back up it just seems to be mucky. So the upsides with them is the opening folds up into the bag which means no scratching and they are pretty good at quick drying if I have been swimming and don’t fancy changing my bag. I’m sure I will get the perfect bag at some point.
What consistency is your output?
It’s usually very watery but like thick soup. But then if I haven’t drank enough it goes really thick.
Which food works best to thicken your output?
I think it’s white potato or white rice. But again I’m not too sure however I’m sure soon enough I will know for sure.
How long did you stay in hospital? How long before you changed and emptied your own bag? What did you pack for your stay?
I was in for 4 days and then another 2 a week after for dehydration (see scared to drink) I emptied my bag 2 days after surgery and I changed my own bag the day I went home. I packed pyjamas, large underwear, dresses, my phone charger. One of my sister in laws gave me a bag of magazines, a notebook and pen, an adult colouring book and pencils, some hand lotion and lip balm (thanks Sam truly appreciated that)
How long after surgery was it that you had a poo/drank/ate/walked around?
I drank within a few hours but I was only allowed sips. I ate a biscuit about 6 hours after but was allowed porridge at breakfast. I had a poo at some point in the day after. I walked around the day after surgery too, up to the top of the ward and back then the next day I did stairs.
What type of surgery did you have? Key hole (laparoscopic) or open? What do your physical scars look like? How do you feel about them?
The first surgery was open but for my ileostomy it was key hole. My first operation has left me with a long scar from above my belly button down to the top of the mound on my vagina. That split open twice due to infections. This surgery has left me with three small scars. At first I hated my original scars because of the splits. But it didn’t stop me wearing a bikini with my 2 best friends Professor and Finchy on a beach in Italy the year after. I don’t really notice them now and it has faded really well.
Have you named your stoma?
No. It has always been and will always be part of me so it doesn’t need a name. However 00Steve said I refer to it in the third person.
How often do you change your appliance?
I change mine every 2/3 days. Unless I have been in the bath/swimming pool/had a leak/ or if it just doesn’t feel right or peeling.
Have you ever had a blockage? What caused it?
Luckily I haven’t had a blockage yet *touch wood* I thought I nearly had one but I just made a point of drinking more water to try and flush it through.
What’s a comfortable sleeping position? Have you had to change sleeping position since surgery?
I sleep on my back and sides, having biggish boobs means laying on my front has never really been an option. But for the first couple of weeks it was back only.
How often do you get leaks? How do you deal with them?
I have had 3/4 since surgery. The first was due to my stoma retracting and I just needed a convex bag (see first leak and new bag). The others were due to too much gas and it popped the seal. I have an incontinence sheet under my top sheet to save my bedding. But I just get up and clean up. I’ve only once had to wake 00Steve up and that’s because we stayed at a friends (see worst nightmare)
So that’s the end of part one, although I’m sure it won’t be long before part two is up and live too! If you too live with an ostomy and want to offer your experiences etc either comment below or find Laura on Instagram and join in!