Preparing the house for all the needs of the stoma is seriously like bringing home a newborn baby....
O.K, so it's day 14 post op, I've been home for exactly one week and in some ways I feel like I'm improving everyday and in others... holy mother of God, the pain in my buttocks area is freaking agonising!!!
Let me catch you up.....
The first thing I did after surgery, when the pain meds had kicked in was to lift my hospital gown and check out this thing ...'the stoma'. It was a swollen, bloody, largish blob sitting out from my stomach with a clear bag attached to it. I have to be honest I wasn't completely repulsed and that probably had to do with the fuzziness that the pain relief was providing.
I mentioned in a previous blog, it was just another thing that was taking care of a bodily function. I'm happy to say though that I've developed a real appreciation for what this surgery has given me.
So, with that intro I would like to introduce you to STELLA, my stoma. She's a hardworking, interesting and oftentimes funny little thing and yes, I am going to share with you what life has so far been like with this new addition.
The first time I had met with a stoma nurse was back in December and that was off the recommendation from my surgeon. I was shook, not only was I still in disbelief that I had cancer, but I was also reeling from the news that she would not be able to save any part of my back passage and I would most definitely have the need for a permanent ileostomy. The last thing I wanted to do was speak to a bloody nurse who would have no clue of the distressing storm that was battering inside of me. But like the good girl I am, with hubby by my side, I trudged along to the hospital (it was literally a 3 minute walk from the surgeon's offices).
It was a turning point for me, I unfortunately can't recall the stoma nurse's name, but she was fantastic! She showed me the different brands of bags, handed me some information about diet (a carb lovers dream) and spoke with me about all the stoma patients she works with. My biggest question I recall was 'What can I wear with this thing hanging from my tummy?' She grabbed a bag and placed it on my tummy (I had a denim skirt on), and said 'there you go.. you could absolutely wear what you are wearing now with no problem'.
This quick meeting allowed me to power up and switch on! It pushed me to begin researching all things stoma related. You Tube videos of younger men and women living with a stoma, stories of cancer survivors, IG community of ostomates....and so on and so forth. I spent a good ten hours post that meeting, immersing myself in this world of what was coming for me...
For anyone reading this that is going through something similar or you know of someone, my main piece of advice is to research. Don't put your head in the sand. Knowledge is power and when you gain a stronger understanding of anything in life, you feel better, more prepared and armed to conquer! It has helped me enormously and i do believe that the reason I am coping quite well with this change in my life now is due to my commitment in understanding what this change will represent.
O.K enough of the heavies!
Getting to know Stella
Emptying the bag for the first time - This is harder than you might think. The job of any stoma nurse is to teach you how to empty your own bag, how to change your bag and clean your stoma, how to use the products and explain what all the bits and pieces that are supplied to you. Believe me there is a plethora of stuff! Sticky bits to put around the site, round gel like plasticine type stuff to place around the stoma (I am not using technical terms obviously!) Powders, sprays, wipes, cloths, scented bag spray's, hernia belts, specific ostomy suited underwear, scissors, measuring circles......I seriously could go on and on but I'll stop there.
Lets empty the bag
O.K, as I was saying the first time I emptied the bag, I just wanted to make sure that it didn't go anywhere else other than the toilet bowl. I sat on the loo, scrambled as far back as I could (yes this freaking hurt, my bum stitches were not impressed!), opened the velcro tabs, aimed downwards, (OMG, I just realised it sounds like I'm talking about the aim of a penis!!😁), and released all the output from the bag. Yes, it's now called output! isn't that word lovelier than poo? I then wiped the opening inside and out, rolled the opening back up and 'Wola!' Mission completed! I tell you, I was pretty impressed with myself...and considering that I empty the bag around eight to ten times a day, I'm glad that it's as simple as that.
Changing the bag
Now this is harder, I needed to learn quite a few new manoeuvres (Ok, ok I know it's not Top Gun but still). This is all about preparation. In the hospital I was shown how to do a full bag change after a shower. I was too self conscious to attempt to do a full monty change in view of all the wonderful staff! Nevertheless, you must have a 'nappy disposal bag' on hand to place the used bag in, the measuring circle gadget (this is to check the circumference of the stoma, as it will shrink over the following six weeks from surgery, Stella has already shrunk 10mm), a new ostomy bag, scissors to cut the exact size to fit Stella, wet wipes, removal spray, adhesive spray, and some cloths. Yes this is standard apparatus needed to perform an ostomy bag change!
You want to be able to do a 'bag change' when your stoma is not as active, so preferably before you've had anything to eat. (Stella is working around the clock, so I've had the joy of trying to change her whilst she's gurgling away! I told you, she's a hard worker!) Anyway, removal spray unsticks the adhesive from your skin, wet wipe cleans the whole area and you definitely need a few of these!
Measure time - the reason this is so important is that you don't want to not have a snug fit- the aim of the game is to avoid leaks! So, you've got the size, you then need to cut out the circle on the ostomy bag. (All the whilst while keeping an eye on the stoma, and having it covered with a wipe, in case it's active! Geez sounds like a volcano)
Spray the surrounding area of the stoma with adhesive spray, fan it and wait for it to dry, about fifteen to twenty seconds, and then stick the new bag on top, press down for a couple of minutes, pray for a good seal and then go and make a cocktail!! No, just kidding about the cocktail, but seriously it's a bloody effort!! It is recommended to do bag change daily, however after hours upon hours of research within the ostomy community, the consensus was usually every three days. I'm on a second day change, and that's because it's so hot and humid, I feel more comfortable and fresh doing this more frequently! So that's that!
Diet - What I can and can't eat
What startled me was the change in diet that I would have to adhere to, especially in the first six weeks of having a stoma. I may have mentioned before that the aim of the game is to have the 'output' at a toothpaste consistency as this assists with avoiding any leakage issues. If you are a lover of carbs, then my friends you would be delighted that my main source of food is white bread, white potatoes, white pasta, white rice...notice the pattern? I've got to tell you this was not music to my ears. For all of you that know me, I love the gym, I love my protein and salads (wine too, hehe). I avoided breads as much as possible and preferred my green vegies as opposed to potatoes and rice. Now however, Stella works at her optimum best when I feed myself enough carbs for the day.
Starting my Day Routine
So my morning kicks off with an almond latte, followed by a piece of toast with either vegemite or peanut butter. I then usually try and have half a banana with some shelf life peaches. That ticks me over for a good couple of hours. In between this I have to drink litres and litres of water per day, and at least one litre of this has added electrolytes. That's another thing they tell you, it so easy to become dehydrated with an ileostomy, and yep absolutely true! I've suddenly become light headed and unwell on some days and I've had to chug down a big glass of water with electrolytes pronto!
You also need to chew, chew, chew! Why? Because we dont want a blockage! Lots of lovely horror stories on the pain of this happening, so I have adopted a marvelous chewing gameplay.
Now I will say this, I've had the function of only my small bowel for over twenty three years so I have noticed that the reason Stella is working like a champ is because my body did not have to learn to function without the large bowel, it learnt to do that decades ago! Silver lining! Woohoo!
A big addition to my diet is peppermint tea! I just love it! It's soothing, helps me digest all my food and compliments my fluid intake.
One more thing about eating, I will literally eat something and I will need to empty Stella within thirty to forty minutes. I like to be close to bathrooms!
My First Outing
Yesterday, I ventured out for the first time since surgery, I posted some cute photos on the IG, and thankfully we were seated close to the bathrooms as within half an hour I had to use the bathroom. It makes me think that some future activities like a concert, the beach, a picnic even will need military precision planning. The things I think about!!
One last thing about food- so I had seafood ravioli and I digested it just fine. It was delicious but boy when I got home and used the bathroom.....
WARNING WARNING ....but I'm keeping it real peeps
I emptied the bag and 🤦♀️ OMG it was like I had just walked in to a seafood shop! Like 👀WOW👀 ....That is how quickly food passes through the stomach and through the small bowel! It was crazy!! (Sorry, sorry......grose I know, but hey I'm living it!)
How I've started to dress
I've gone out exactly twice post surgery. In this heat, is it just me or is this not one of the hottest summers here in NSW ever experienced?; I am most comfortable in dresses. The week before surgery I bought this beautiful emerald green dress, cut just a little below the bust with a wrap around tie on the waistline, A-line, mid calf, linen blend. This dress fits like a dream, conceals Stella and I feel so much like myself. Makes me so happy!
Around the house, I've been slouching around in a singlet top and elasticated shorts! I am a fashion Goddess I know! So comfy and I dont think you can tell I have a bag! Yippee!!!!!👏
I haven't tried on any jeans as yet and I will attempt that in the next couple of weeks when I've healed some more. I have a feeling that there are going to be plenty of donations going to the Smith Family in the coming weeks which is a great thing.
Preparing Space for Stella
Has anyone watched that Friends episode when Rachel has the baby and comes home and Ross ducks out to the shops to get stuff for the baby? I have to giggle here, because that is EXACTLY what it felt like when I got home last week. Hubby dropped me home, made me comfortable and then made a list of all the things I needed for Stella, our newborn (well mine, but hey we're in this together...I'm so blessed🙏)
Chux (cloths to cut up and then chuck out after a change)
Big Bin for the bathroom
Baby Wipes for home and travel packs
Hook for the back of the bathroom door to place the 'stoma goodies- bags, scissors, sprays etc.
Yep, it really did feel like bringing home a baby! She's a cutie!
So there you have it gorgeous people, a glimpse into my life, living with a stoma. I share this in all it's glory to help whoever is interested gain more understanding and also to alleviate the stigma felt in being different from the norm. I hope I haven't grossed you out too much, but hey... this is real life and actually I'm grateful that Stella represents a re-birth after the death of a cancer that grew inside me. I realise I have many months of battling to do but at least I still feel beautiful, even with Stella stuck by my side for life.
Until next time,