TOMAS THE STOMA

November 28, 2016October 3, 2017

PERINEAL PROCTECTOMY (BARBIE BUTT)

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.

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.

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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.

November 9, 2016

I wonder what happened to whatshername…oh yes , me

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Back to stoma talk. Can’t be helped , this is me now , confused, sad, happy, weird , questioning, always questioning. Is it normal for ones emotions to jump about so much? I think I am used to having a stoma one minute, to pure fear with the thought of living like this for the rest of my life. For instance, have you thought about coping with a stoma when you are old? I have. I see older folk in the hospital with stomas, who struggle to cope now for various reasons, arthritic fingers, dementia, waiting for help from the busy nurses. For the nurses, it should be a dream patient, one who doesn’t actually shit the bed, but they would come with their own stoma issues. Only nurses who work with stomas all the time, truly know.

As of the 17th of this month, I have absolutely no way of going back ( I don’t now really, but I still have my bottom even though it isn’t connected to anything ). I won’t ever use the toilet for a poo the same way EVER again.I will always have Tomas, ALWAYS.

What about when my skin gets wrinkly and baggy, will the bags fit properly? We hear about the young people with stomas much more now, before it was very taboo, but why? didn’t anyone ask the mature stoma folk what its like? I don’t ever remember any stories or pictures of elderly stoma patients enjoying life. Maybe because they were just getting on with it, not worrying about what people thought. I would love to hear from an elderly person with a stoma,( did you name it?,) and listen to their story. If anyone reads this, please let me hear your side of the stoma story.

Not sure if I am doing the right thing by being so open about my journey, but when I see others doing the same, I feel proud. ( and upset, I thought I was the only one being so graphic, then more people might read my blog, but alas….I am not alone).

Not long before I go under the knife again, am so scared of it all. I read up about it, sometimes wishing I hadn’t, sometimes glad that I did. It still feels a bit like a dream (nightmare ?) and one that I won’t be waking from.

I am feeling very morbid at the moment, I am sure it is because of the upcoming surgery, the winter drawing in, coldness etc… I feel isolated in my own mind, with my own thoughts. Will I be able to enjoy christmas? how much pain will I be in? eeek. If I am like this now, what will I be like the day before?. I need a sedative from now until then.

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I have had problems with peas lately.

They seem to bother Tomas. I end up very watery as the skins block the output, and it makes me feel just ugh . I have had them before though, so I think I don’t chew as well as I should the more I get used to it all. I had a small amount of mushy peas the other day, and I think even those are no good now, I assume that being mushy, it would go through no bother, think again. It makes changing the bag a barrel of laughs. I get through a million tissues. First time I have seen Tomas look like he is having a wee. Mums first comment on seeing it in the first place months ago was ” it looks like a penis” .Today it is a lot better, but I hate the fact I have to be careful what I eat, I have found going for meals, a pain in the barbie butt,( haha) I might love the sound of it but you can bet that there will be something used in the dish that could cause me problems. People who know me, know i like to eat so this is sad news.

I can’t wait for all the surgeries to be over with, not long now, hopefully my and my families life will take an upward turn for next year.

November 6, 2016

Now for something completely different

I have decided to put together some of my most favourite photos , some weird, some comical, some very normal but just different ,but mostly fun. Hope you like them, I will put a small description by them.

Thought I would have a change from bags and bowels.

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This picture is a wonderful rooftop view of Corfu town.

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A roof top ( theme here somewhere lol) of the bell tower in Riva Del Guarda 31795_1347525572707_6540856_n

A cute bird in Corfu

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My boxer enjoying the Devon coast

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One of my favourites. Turkey.

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Albert and Misty, captions please

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Beam me up Scotty (poor mum )

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Beautiful tree in Barcelona.

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An amazing work of art, Barcelona

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Autumn.

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Just found this amusing,

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Totally reminds me of Greece

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Same reason.

November 4, 2016

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.

October 23, 2016

GETTING TO GRIPS

Things are falling into place. I ‘do’ my bag change myself, and have for a while now. I have started to change it when I want to, and know what to do should it require more attention. ( if it gets sore around the stoma or itchy where the base has irritated it.)

For absolutely no reason I can find, the area around my stoma will be sore, also I will get itchy underneath the bag for no apparent reason. All I know is, if I have a good clean and airing, plus use all my potions ,it will improve again and be fine for a while.

The output is another wonder. One minute its thick like porridge (this is the normal output to expect) then it is suddenly very watery or smooth like chocolate. I know it has to do with what I have eaten, but it is difficult to know exactly what. Except when I eat a whole bag of Galaxy counters of course. They tell you to watch or avoid certain foods, and to chew chew chew, that is my new knew annoying word of the month.

We are not supposed to eat veg skins, potato skins, raw veg, mushrooms, sweetcorn, etc… but I have eaten a bit.I remember seeing some fairly large bits of mushroom come out the other end. Very weird, as you can’t feel it actually coming out.

I use disabled toilets when I am out and one is available. I have never had anyone comment yet, but god help them if they do, I will be ready for them. I feel better in them than normal toilets because I have space to do what I need and don’t feel embarrassed ,for many reasons too. Its not just the stoma at the moment. I would also need to use them to change my bag if I need to, I know it would be very hard to do all that in a small cubicle.

I went for a meal with my husband the other day, and I must say, things were fine. I have also been out with my closest friends and all was well.I have managed some alcohol but do get dehydrated much quicker so don’t go too mad. Things are on the up… just when I need to go into hospital for my next surgery. Sods law I think it is called. I am not looking forward to it,( who does?) but I know it needs doing. I will be having a perineal proctectomy and stoma refashion. In other words, a barbie bum and stoma re-doing, I just hope I recover quicker than the last one. Don’t think I will be sitting much after for a while, I assume it is a bit like having had a baby with lots of stitches.

I AM excited for it all to be over and I can be normal again, but I also wonder if being normal again is possible. Will I be able to go out without constantly feeling if my bag is getting full, will I forever look down at my tummy to see if you can see anything underneath. I know it seems silly to worry when I am happy to paste it all over the net, but that doesn’t feel like me really. I can tell the story and even post the pics, I can tell my friends ,and show my friends even, but don’t like the thought that people are talking about me in a negative way. I want to tell the world that it is ok and not strange / smelly/ odd, and I know that is what some think as I used to. I want to be able to tell people that it is not always old people who have stomas, and not all stomas are the same.I am trying to embrace my new life because I will go rapidly downhill if I don’t. If I think about my future too much , it can be very scary.

This is me now, and compared to months ago, I am doing well. Fingers crossed….. 14479783_10207377242333785_4917849874162228449_n

October 16, 2016October 3, 2017

BALLOONING AND OTHER FUN

A funny oddness about stoma bags, is ballooning. I suppose its my breaking wind that causes it. I first encountered this oddity on the ward. I woke up and felt the balloon under my nightie, and when I stood up to go and empty, I had to hold it up slightly otherwise it feels like it is dragging enough to come off altogether. I am used to this now, but cannot believe someone hasn’t invented something to stop this happening. I mean, stomas have been around for years and bags have got much better since the early days when a sponge was attached to the opening with an elastic bandage to absorb the leakage, this was in 1776 and was the first successful ostomy.Previous to that ,the procedure was not effective and they couldn’t control infection.

I expect manufacturers are looking into ways of perfecting the pouches, but farting and blowing up the bag? really?

Another annoyance is pancaking, and it pretty much is what it sounds like. The poo has flattened and is squeezed between the pouch base and the skin, so it leaks onto the skin and then the skin becomes sore. I seem to be lucky and only had this happen once, and very minimally.

I had my first shower without my wound plaster today. It was wonderful, the final scabby bit has gone and this means I can now have a proper deep bath too.

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It still looks like a second belly button, but I suppose it is something I will have to accept. Again, its better than the alternative. Bio oil here I come….

Sleep is something that gets disturbed for many reasons. Obviously the stoma doing its thing through the night can wake you up, either because the bag is getting too full or the sensation is enough to wake you. But an important factor for many people would be your thoughts. Especially in the early months, or when there are still issues, it can be hard to shut down. As soon as the lights go out, my mind goes in to overdrive ,and I relive the horrible experiences I went through , and my time recovering. I was given sleeping pills which really help me when I need them, I do struggle to get up before 11am if I have had one though, as my husband likes to remind me.

I have also started my counselling sessions, which are an eye opener. It is nice to talk to someone who has the expertise to help you get your thoughts in order. I am not sure if it will help in the long run, but I am happy to try. She is very amenable, and makes me go deeper into my feelings. When she asked me to tell my story, she said I was good at telling the story but at no time did I say how I felt at each point. Also she said I was good at worrying what everyone else was thinking and feeling but not myself.

She was perfectly correct.

October 12, 2016

WOUND HEALING

Well I am pleased to say that my wound dehiscence is almost closed. It has taken 6 long months of care from my nurses and I cannot wait to have a proper soak in the bath, which is so close for me now. I have only been able to have a shower with a waterproof plaster over my normal dressing , being careful to still not get too wet.

I have had two very shallow baths in 6 months and it wasn’t worth it. because I was so boney, it really hurt to lie down in the bath, so my husband had a brain wave. We bought two kitchen chair covers from Ikea , and put them in the bath, then I got in.I have to say, it was very comfortable, just a shame the bath water was a cup full.

I don’t have any pain in the wound now, and only really had minimal pain even when cleaning before. It is unfortunate that it had to open in the first place, as the scar now looks strange at the bottom. In fact when I stand it looks like I have two belly buttons.

I suppose I can buy high waist bikini bottoms if I decide to show my tummy on holiday. I think I will, it will help raise awareness and it will boost my confidence I think. It would be silly to flash everything on my blog pages but then worry what people think on the beach.

I know some folks have had much worse wound dehiscence than me, where most of the wound opens right up and they need vacuum healing. So I was lucky for it to stop at the bottom of the scar. I remember looking each day to see if had crept up the scar , and watched it do just that to start with. I was also allergic to the plasters they used originally, and found it very itchy but not being able to do anything about it, until I was told about Mepilex plasters. The are amazing and don’t hurt whatsoever when taking off, and no allergy. They are apparently quite expensive so they may try and put you off ,but if you have an allergy to plasters, this is the one.

October 10, 2016October 3, 2017

AT HOME

When I was told I could finally go home, I was so happy, but also terrified. Could I cope at home with the stoma? was I well enough ?what if something went wrong? I wouldn’t be able to ask anyone that moment. I was still extremely thin as you can see from my photo, and my hair was just as thin.

My husband and mum came to fetch me, and I said my goodbyes to the wonderful ward staff who had looked after me for all those weeks.

I had a large bag full of medication and we were on our way. When I walked through our front door and also saw my daughter, I cried, ( my son was away at university, but had seen me a few weeks before).it was very emotional and the strange thing with being so ill and weak for a long while, I realised I couldn’t climb the steps on my own, my husband had to help me. I also found going upstairs was just as bad. I went straight to bed and was so comfy, it was wonderful. Before I left hospital, I had already got used to emptying my bag in the loo. I prefer to sit down and do it, but I know others like to stand too.

I was still in some pain and had been given morphine which helped a lot. I found that the mornings were the worse, and getting out of bed was especially difficult with pain and stretching. My husband had to flush out and empty my rectal drain, so before he went to work I had to get out of bed and stand whilst he did this. On the first morning, I was very sleepy and weak, and he got me stood at the side of the bed and started to empty the drain. All of a sudden he had grabbed me as I had hit my face on the window, I had fallen asleep standing up. I was so scared and upset, as I had never ever done anything like this before. I was worried at first that I had collapsed, but we decided that because I fell forward and not down, that I had indeed fell asleep.

The early days were hard, and it did take many months to feel remotely normal, mainly because I was still having my wound packed and dressed daily for weeks, and my rectum was very uncomfortable. I had the catheter taken out eventually, and the surgeon said that the fluid would hopefully come out my back passage and not pool in my pelvis again causing infection. I was pleased not to have that strapped to my leg, and indeed the fluid came out my bum, but it was and still is a problem. I have to wear pads constantly and feel it come out when I stand up. It obviously makes me sore sometimes. The surgeon said I would need a proctectomy, which is the remainder of my rectum removed, and my anus sown shut. I also need a stoma refashion to get rid of the fistula. I am now booked in for that in November and will let you all know how that goes. I am scared though because it is the unknown again, and I don’t want the problems again. The thought of having to heal again is a horrible thought, but I need to have this done to feel right. I am much stronger now 6 months on so I assume I will heal better.

I am expected to be in for just a few days this time, and feel more prepared for surgery and the time after. I keep reading other peoples stories about their recovery, and some are great, others not. A bit like scanning the internet and finding you have all the diseases going. I am lucky in that they won’t need to open my abdomen scar up in my case as I only have the short rectum,so they can go through the back end only.

You forget about the little annoying things that hurt, including my heels. Because I was in bed a lot of the year with illness leading up to surgery and then the long time in hospital, my heels got very red, and they changed my mattress while I was in there, to stop bed sores. My heels didn’t actually open up and ulcerate, but they were very red. I still have heel ache where it feels like it is bruised and ready to get sore.

Also now when I need a blood test, I hardly have any decent veins, as they were used constantly with cannulas and bloods, so when I recently went to my pre op, she was stabbing about like a blind woman. I remember that happening a few times in hospital too, where they either try and put it in as slow as is humanly possible which hurt like hell, or stabbing here and there.Funily enough it was the doctors who were by far the worst.

October 2, 2016

MOVING FORWARD

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A couple of weeks before I went home, my dietician asked me if I would consider being fed through a tube down my nose into my stomach as I was too thin and still not eating very well, this was keeping the healing process slow. I said I would think about it, and didn’t. She kept mentioning it over a few days, then one day my stoma nurse was with me when a lovely consultant whom I got on really well with was on the ward. I told my stoma nurse about the tube feeding and how scared of it being put down I was, and she said it would really be the best thing for me and to just have a go. My mum turned up too , and I made the decision to try.

We called the lovely consultant over, and I asked her if she would be willing to put it in that moment ( I was feeling brave, but knew if I left it any longer I would chicken out). She said yes and got it all together. She told me to drink some water as she was doing it, so I took the glass and drank, I just drank and drank as she pushed it down. It was horrible but manageable with liquid, but I ran out and panicked by grabbing the tube and pulling it out again. “I was nearly there” she laughed, “why did you pull it out ?”I laughed too and said I ran out of water. So, we got more water and tried again, this time with success. I was so pleased with myself, but also it was uncomfortable to start with.

My mum was upset when the tube was going in , she went out the cubicle and chatted with another patient friend of mine. My husband was proud of me when he got there, because he knew it would do me good. The dietician was also very pleased as I think she thought I didn’t have the guts ( no pun intended).

That night they connected me up to my liquid food, to have overnight. When they flushed it with water first it was a stranger cold sensation down my throat, then I watched the food following the tube until it vanished into my nose. Very bizarre. I kept it in for a few weeks, then disaster struck.One morning I was sick, not sure why, but when I puked, I puked the tube up, it was awful, the nurse was nearby and she said “pull it out, calm down” I was waving and flailing around, and tried to pull it from my mouth but it wouldn’t budge because it was stuck to my nose with plaster, so I tore off the plaster and pulled and out it came, the relief was lovely. I was then worried it would have to go back in, but they agreed to let me try to eat again and see. Luckily it worked and I didn’t need to go home with it.

It wasn’t long before I was allowed home……

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