What’s it like to live with a stoma?

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I have not been sleeping very well, having nightmares and generally blurggghhh. Woke up early and realised I had a small leak, but big enough to piss me off. I had to change my bag before work, and change duvet cover. I am glad it rarely happens to me and lucky that my husband is great about it all.

I normally like to change my bag when sitting up on the bed in the evening, its comfy and Tomas can get an airing for a good half an hour, so doing it quickly makes me uneasy, I worry about causing a rash because once they start, it takes a bit of sorting and can be unbearably itchy. I am blessed with a spouty stoma and not a flat one, so my skin isn’t too bad.

I go to work and all is good. I usually have to empty my bag about two or three times at work, but it’s not a big deal. I do worry about having a leak there though. I have no bed unfortunately, so will have to change it standing up ,eek.

For no apparent reason my output can be like water for a few hours, this means I usually have to empty a lot more. If you leave your bag for too long, it feels like the weight could unstick it, no thanks. So people, if I say I need the loo, I really need the loo.

I empty a few times in the evening and just before bed. This is usually when Tomas decides to wake up and be noisy as I am nodding off. I will then have a sixth sense at about 5am, and wake up to empty again. This is when my bag could be like a balloon, depending on what I have eaten. I am lucky that I can go back to sleep after.

Living with a stoma can be mentally and physically draining, but when things are running smoothly, it’s not too bad. For some, it can be awful, they have very sore skin, many leaks and really struggle to get the right products or help. For most, it saved their life and you have to learn to live with it.

I change the whole bag about 3 times a week all being well. You get a feel for when to change it, I start to get slightly itchy and like to change it then. I have never showered without a bag, having an ileostomy means I am incontinent, so I get output at any time, fine when you are actually in the shower, but not so fine when you get out and are trying to dry yourself. Same goes for a bath. Bagsare waterproof and don’t come off in the shower or bath, so I just keep it on.

Life with an ostomy has its ups and downs, but I am glad I survived a terrible ordeal and yes it leaves scars, some visible some hidden, but I am here, and I am ok.

 

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Back at work

Well I have been back to work for two weeks on phased return, and I am glad to be back.Everyone is happy to see me luckily, and I have been reasonable well. I did have a small leak from my proctectomy before I went back and a swab found infection so was on antibiotics for that, which cleared up fine.Only thing is it left me with oral thrush so am on oral suspension for that.

This morning I woke up with a slightly swollen eye and itchy skin, so it seems I am allergic to something, maybe that thrush stuff, annoying. Will see what happens today, luckily I am off work today anyway.

Tomas decided to make himself known in a training session, by making loud noises,there were only three other people and at first I made excuse about tummy rumbles, but the noise didn’t really sound like that so I fessed up. Those happened to be folks who didn’t know about him, so otherwise I would have laughed it off.

I have been lucky that I have not had a leak at work, usually I don’t leak, but this week my stoma bag leaked twice at home.They were both small leaks that didn’t spoil anything, but you always have that fear, and I noticed both as I got up in the morning, so it set my morning routine askew and I felt a bit rushed. I like to air Tomas for 20 mins when I change my bags, to help prevent itchy skin and time for the barrier spray to soak in. I found myself pressing the edges of the bag over my clothes all morning to double make sure it was stuck well. It could be a lot worse though, and I could leak at work or all in the bed. All in all, work has been great, and I have settled back into it, and all the new things that have been introduced in the year I have been off.

I was measured for a hernia belt too last week, I wasn’t sure about them at first, as I thought they might feel very tight, but I was pleasantly surprised. I get three on prescription a year, and not only that, I can have them in the pants style with lace. I have decided to try them both and decide on the third, based on the outcome. I will mainly use them for if I wear dresses and skirts ( those that know me will probably say, never then) but even tighter clothing would look better as the support with hold it all in and flatter, but allow the bag to fill up still.

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You can get them from the NHS or websites that do ostomy underwear.

 

PERINEAL PROCTECTOMY (BARBIE BUTT)

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Well its two days before surgery at the moment , and I am shitting myself (not literally, thats impossible). I have high anxiety levels where my whole body is on high alert. I feel on the verge of panic constantly. I hate this feeling, I wish I wasn’t such a worrier, my mum almost skips into surgery , whats that about ?.

My bag will be packed soon, I keep looking at it ready but not quite sorting it out yet. I have to be on the ward at 7am and have four pro op drinks to drink before midnight, then two more a couple of hours before my op. Thats great, that means I should drink them before 7am in case. The surgeon is refashioning my stoma too, although I need to ask again if it is worth the risk, as I am coping ok with it now. The risk was …more prone to hernias, and prolapse of the stoma. Don’t fancy either of those thank you.

I am trying to fill my few days before surgery so I am not thinking too much all the time, it is very hard to do. Even though the last surgery was awful, I am much healthier but also have the time to worry, I didn’t really have time before.

THE DAY OF SURGERY

We had to get up very early, I had to drink 2 pre op drinks, 2 hrs before surgery so I played safe and had them before 6am. Gross that early in the morning but had to be done.

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We went to the surgical admissions ward and I had various checks, then got into my gown. My surgeon came to see me, and I mentioned my worries regarding having my stoma redone. After a short time, we decided to leave the stoma and concentrate on the proctectomy. I am able to look after Tomas as he is for now at least.

When it was time, I had to walk down to theatre, it was the walk of doom, I really wanted a sedative before all this, but no luck. The anaesthetist said I wouldn’t need an epidural for after pain relief this time and should be ok with intravenous painkillers. I lay on the bed, the surgeon was there too. Before I knew it, It was done.

I woke up in recovery, in complete pain,the worst I have ever had, the nurse soon filled me with pain relief and then I was fine.I had a bit of temperature but that got sorted very quickly.I felt the odd twinge but all was ok. I had a cup of tea and a sandwich, then had to wait the whole afternoon for a bed on the ward. Meanwhile, my catheter was removed and I had some fluids. I was soon asking to use the loo. They tried a bed pan and I just couldn’t wee, so they got a commode, and again, I tried, but just couldn’t wee. I got quite scared and soon needed to wee like a horse.Apparently this is not uncommon after this type of surgery, as they are so near the bladder, and have also put in pain blocks, so another catheter was inserted, and oh the relief. Eventually , at 8.30pm, I was moved to my favourite ward. My wound was looked at, and deemed very good, I was settled and ok.

I started being a bit itchy, which I had last time and they said I was allergic to the antibiotics, but I wasn’t on those. My cannula stopped working so they gave me morphine by injection. As soon as it was done, I knew it was the morphine. My arm went red with a largish white patch where the injection site was. The doctor had to draw around it to make sure it didn’t spread. Luckily all was fine and I was swapped onto Tramadol. I had a comfy night and in the morning was the doctors rounds. He was pleased with how it had gone, and said that my surgeon had found some infection in the stump still, so had put packing up there with antibiotic gel, and sewn me shut. The packing absorbs eventually.

I had on my sexy socks, and was told they would leave the catheter in another day then to see how I got on.I stayed one more night, then the next day, I thankfully had a wee, ( I rang round family to tell them the good news 😉  ) I was allowed home.

I decided to have a look at my wound at home. I was a bit shocked, if I thought my other scar was frankenstein-like, I was in for a shock. I had bruising, but the scar was long and swollen.No wonder I was having trouble sitting. It became a bit more uncomfortable as the days went on, but I managed to sit very wonkily. One cheek then the next until it was easier to get on the bed and lay on my side. Cleaning the wound was fun too, either in the shower with the spray directed onto it, or a very shallow bath to splash myself with.

It has now been 10 days, and it is not too bad.Slightly more comfortable to sit longer with, we have bought some foam to cut into a seat shape made from memory foam, I hope it works as I want to see my daughter perform at christmas at the theatre.

I have taken a photo of the wound, but am not ready to show all just yet. Watch this space.

The voice inside my head

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A problem I have always had even before the operation is a little voice in my head. Not like schizophrenia , just me questioning everything I say or do. I am a well known worrier. Tried to put whittler but it seems to mean someone who uses a whittle knife thing lol.

Since surgery this is now causing me problems. I don’t sleep well for worrying, My mind goes into overdrive when all is quiet. I feel this is starting to get out of hand , and my counsellor spotted it too. I feel it makes me a weak person who over worries things constantly to the point it takes over my days. My councellor says it doesn’t make me weak in the sense of power /weak, and any mental health issues are an illness like a broken arm. Interesting.

The fact that I have down days at the moment is to be expected and I suppose my worrying more is too. It’s just that it is exaggerated at the moment. After my sessions I am worn out and pretty emotional for the rest of the day. I also realise that I miss my dad more than I thought. He would be right by my side with the rest of my family, and would be down to earth, with lots to say and right beside me.

I have been given sleeping pills but know not to use them every day, so I struggle on the days I don’t take them. Last night I lit a lavender scented candle for a while, my husband agreed that we could hardly smell it, that is until I blew it out, then you could smell it for a few minutes. I have been given a relaxing CD which I keep looking at but doing nothing about. I just want to be able to close my eyes and go to sleep. She suggested a warm bath before bed, but that wouldn’t work for me. I would have the bath then get out and feel that I need to change my bag, even though they are supposed to be waterproof, I feel better when it is changed completely. A milky drink, maybe , but I end up waking again for a wee.

I wish I wasn’t a worrier, I would like to be a warrior instead.