It’s been a learning curve, and that’s possibly slightly understating it. There have been tears, tantrums, eureka moments and lots of poo. To begin with I couldn’t bring myself to look at the stoma. Don’t get me wrong, I’ve never had a body to rival Elle Mcpherson, I’m overweight, and have a mum pouch, but I’m generally happy in my own skin, to quote Mika, I’ve got lumps and bumps in all the right places (I’ve probably quoted that wrong, but you know what I mean). However the stoma freaked me out - my insides were on the outside and I had a bag stuck to my tummy. What. The. Actual. Fuck.
So the first week or so, I had very little to do with the stoma, nurses and care assistants emptied it and changed it and I ignored it as much as I could. I hadn’t looked at it, I’d glimpsed it, but looked away quickly. I’m squeamish when it comes to things like this on my own body - fine looking at things like this on other people, but on myself - nope.
Someone suggested to me I should name the stoma, apparently this helps to accept it. This appealed to me and I started to think of names. I quite liked the idea of having a designer bag so Louis Shiteon and Dolce & Gabagga sprang to mind. I went with Dolce & Gabagga for the good days, however on bad days she’s a Bagga Shite. She’s also referred to as Vesuvius, It, and M’Bag. When she’s being noisy, which of course is when everything else is quiet, I like to think she’s having a little sing-song. It’s worth noting I have absolutely no control over the stoma. I can’t hold it in, or wait till I’m somewhere more discrete, when she wants to sing, she sings.
While in hospital the Stoma Nurses introduced themselves (there were 3 in my hospital), it’s their job to look after the stoma and make sure it’s working and behaving properly and to make sure you have the right bags and equipment to manage the bag. They also prepare you for life with a stoma and help you manage the bag on your own. I was terrified about this, and they knew it. This wasn’t their first rodeo. All credit to them, they were amazing. They subtly and calmly suggested tiny steps forward each time they visited, starting with me looking at the stoma, then taking the bag off, then wiping the skin around the stoma, then putting a new bag on, then cleaning the stoma itself until one day, building up to my discharge, one of the stoma nurses came in and just said “Go on then”, and I did it. I changed my stoma bag all by myself from start to finish. I was so proud of myself and actually started to feel like a capable adult again for the first time in a long time.
There has been a lot of trial and error in getting my bag to stick successfully without leaking. The number of times I just leaked or have woken up covered in poo, especially in the early days was hard. There were times I changed the bag and then leaked pretty much straight away and that was soul destroying. I’m lucky that I have David to scoop me up and put me back together again, he is also handy with a wipe to catch surprise attacks by Bagga when I was changing her in the early days. I had a wound right next to the stoma which had to be packed and redressed daily and was covered by the stoma bag. Because of this open wound, there was a gap between the skin and the bag which made a channel for poo to escape and I couldn’t put very much on it. Constant leaks meant the skin around my stoma was so sore, red, irritated and putting a bag on hurt. The nurses tried so many things to reduce the leaks, but as I healed and my body changed we had to change with it. Although the bag wasn’t terribly reliable, I was able to manage the bag myself and I was discharged from hospital. Still having leaks waiting for my body to heal.
Worth mentioning too that I was still on a ton of antibiotics and that can make your output (poo) really thin, so leaks are more likely. And I leaked all the time. I leaked at home at all times of the day, I felt like I was constantly in the bathroom changing the bag. The thought of going out was completely petrifying - even to hospitals, I had a PET scan in the Heath in Cardiff and leaked twice, changing once before the appointment, and once again when I was waiting for the radioactive injection to do its thing. This was one of our first outings with the stoma, and it couldn’t have gone more wrong. We (Me and David) had no idea what to do, we had no systems, no procedure, we were in the disabled toilet, me half naked, not being able to walk very well, covered in shit, David frantically going through my bag looking for wipes, waste bags, spare clothes, it was chaos, it was crazy, it was a lesson to always have more bags than you think you need, more wipes than you think you need and more of everything really. Cardiff Heath hospital also has a super annoying one way system, one wrong turn and you’re on your way to Newport. From collecting me and parking me in the foyer away from everyone because I was radioactive, it took David 25 minutes, in the rain, to collect the car, navigate the one way system and collect me, the poor man was one eye twitch away from a coronary episode. We were both so totally frazzled that we were half way home before we remembered I should be sitting in the back seat as far away from David because - radioactivity. You’re radioactive for about 6 hours, so told to avoid contact with children, pregnant women and animals - I was confined to quarters.
It’s also worth noting that because I have an Ileostomy, they’re pretty much always active, so it can be like trying to sweep up while the hurricane is still raging. They also have a lot of force and I’ve discovered that thin output can shoot pretty much the entire length of the bathroom without notice or warning - it’s alarming.
I was having district nurses to unpack and repack my dressings daily when I was first discharged, and while they do know how to change a stoma, they didn’t know how to change my stoma, so I would take the bag off, they would clean and redress the wound and I would put the new bag back on, I think that helped with my confidence with the bag, the nurses deferring to me, as it was my body, my knowledge.
We had to wait for the wound to heal before we got a solution that finally meant I didn’t leak within a few hours of putting a bag on. I have to roll a third of a seal into a sausage shape and fill the new crease by my stoma, then a convex seal around the stoma and then a convex bag on top of that followed by a couple of barrier strips around the outside for extra security and a belt. I also find changing the bag lying down is more successful. It’s a faff, but it works. I’ve also worked out that the stoma is quieter before a mealtime so I try and change her before lunch or before dinner - but she does like to play tricks on me and surprises me quite often. A few marshmallows can also thicken up output and make it slow down a bit so I try to have those 20 mins before changing.
I joined a couple of support groups on Facebook and follow a few Ostomates on Instagram. It’s then you realise just how many people are living with stomas, young, old, all walks of life. I think seeing children with stomas helped put things into perspective for me. Seeing babies and young children getting on with things and playing gave me a reality check and the drive to get on with things myself. I also discovered a friend of mine locally has a stoma and she has been brilliant, popping around in the early days to give me very much needed advice and guidance on the practical day to day living with a stoma.
Again with me, it’s baby steps, one thing at a time. I hate being rushed to do a new thing, and I’m not great with unexpected changes - things I have learned about myself since surgery.
So the first steps were having friends to the house, then, feeling brave enough to go to the Co-Op for a few bits, or the post office. Somebody asked me what I was afraid of. My answer - standing in the middle of a shop and exploding shit over everyone and everything. Now, this is unlikely, and saying it out loud helped me realise I was catastrophizing. I am getting braver, I’m now driving short distances again, I’m taking Jack to his clubs, I’ve been to Costco, I’ve been out with friends. I’m also getting stronger, so I’m able to cook a meal for the family, empty the dishwasher, potter about - I still have a cleaner as I struggle to bend and vacuum and my stamina is down the drain, but I’m starting to get under her feet which I’m taking as a good sign. All this is so normal, but for a while things weren’t normal and I don’t think I’ll ever take normal for granted again.
With a stoma, I have to be very mindful about what I’m eating. My surgeon said “eat what you want”, the nurses said “be careful”. So I avoid things that are hard to digest and could possibly cause another blockage; Nuts, Popcorn, Sweetcorn, Fruit Skins, Jacket Potato Skins, Beansprouts. Peas have caused me a few issues so I avoid them now. Each time I’ve had peas my bag has exploded off me - this is apparently common, peas coming out of a stoma can be likened to a gatling gun. Frankly, not worth it.
The advice is to make-like a train and chew, chew, chew! Some things, like potatoes, make the output thicker, so I can’t eat too many chips or it’s too thick and can lift the bag off, and some make it thinner. Emptying it can be interesting when undigested bits of something come out and you think to yourself that you don’t remember eating that. Colours vary too, and one has to remember that you’re not haemorrhaging blood, you just had beetroot for lunch.
I also have to stay hydrated - nothing goes through my large intestine anymore, which is where you absorb a lot of water so the trick is to keep water in your body as long as possible by drinking plenty, but not too much. Plain water, surprisingly, isn’t the best thing for this. It’s better to have squash, tea, coffee, lucozade etc… your body has to work to extract the water rather than letting it go straight through. Who knew?
As for leaks, they’re fewer now that I’ve got to grips with the equipment and my body is healing. The Stoma Team are fantastic and remain available to answer questions and help. I usually email them a picture of my stoma and explain what the issue is and they email back with suggestions and encouragement. There’s always a Stoma Clinic if I do need to see them.
My side wounds are still healing, the lowest wound is so very nearly healed. When it has healed and I’ve got a suitable support belt I can start to do some light exercise and walking. Support belt? It’s a girdle. An almighty super-sucker-inner-hold-it-all-together-stop-it-jiggling-around girdle. It’s a boob tube with the grip of a Boa Constrictor - the first one I got was so tight, you guessed it, the bag popped and there was shit everywhere.
Overall though, I am ok and I’ve made peace with the stoma, she saved my life.
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P.S. My hair is starting to grow back! |
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