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.

 

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

 

 

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.

 

WOUND HEALING

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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.

 

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.

 

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……

 

OSTOPEEL ADHESIVE REMOVER WIPES

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Ok, I didn’t need these just for the bag adhesive, so it wasn’t until I started to use the Eakin seal, which left goo on skin when removed, that I remembered I had some of these. I thought I would give them a go, although I had sensitive skin at the time. I am glad I did, it took all the remaining seal goo off and left my area around the stoma silky smooth. It didn’t stop the bag from sticking either, although I still did my normal routine of barrier spray twice too. Worth a look if you want to remove adhesive of any sort, for any wound.Just to mention, you have to ask these to be added to your routine prescription, not available to order as one off. The company are pretty good for sending samples though. ( Ostomart).

RECTAL STUMP BLOWOUT

So when the result of the CT scan came back, I was told I had a collection of puss and fluid in my pelvic cavity, infected abssess caused by a rectal stump blowout.

This mean my rectum was so badly diseased, the stitches didn’t hold and the end blew causing major problems. I had to have a rectal catheter inserted into my rectum ( only 2 inches left) and into my pelvis through the burst stump. That then collected the nasty stuff.It was quite painful at times, especially when sitting , as the balloon bit that stops it coming out, used to press against my internal wounds.I have to admit that the temperature and ill feeling was much better with the catheter in, even though it hurt.

After a few weeks they tried to remove the rectal catheter, but ended up putting it back in because my temperature came back.This was very disappointing and I was upset, but onwards and upwards.Meanwhile my scar was still scary looking with the gaping wound being packed.

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This is it when the wound was starting to open, you can’t really stop it until it decides.

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This was it just starting to heal. Weirdly it didn’t really hurt too much, although it looked like it should. It was very scary to see, and again I used to not look when the nurses cleaned and re-packed it, eventually I would look.

I have no pictures of the rectal catheter in situ lol, not that brave.I was in hospital for over 2 months because of complications. My scar is very nearly healed now but the scar is much wider than the rest,luckily any underwear, bikinis etc cover the wide bit, no such luck with the catheter, so I stayed home until it was taken out. I am due to have my rectal stump removed in November to stop the discomfort and fluid/blood constantly coming out.(sounds as gross at it is).

I am not the only one who has had these things, and knew nothing about these things before surgery. While in hospital I met people with much wider scar problems who needed vacuum dressings. I was the only one on the ward at that time with a rectal stump blowout. The depression and tears are the hardest to cope with, for me and my family. You cannot help it, it just comes over you like a wave, you cannot believe what you have had done and how ill you are, and you don’t know when you will be ok if ever. I am grateful that I recovered eventually, and don’t underestimate the operation. I have scars and my stoma for the rest of my life, but I do have life.I am showing these images so that others know what we had to go through to be alive, and that a stoma is not a taboo subject anymore, nor is it a gross thing, that smells and is for old people.

More on moving forward….

 

CRITICALLY UNWELL DAYS

I thought I would like to write down my time in hospital, just before my operation and until I left hospital, in more detail. I know eventually that I will forget some points, and probably am a bit vague on others even now. As I said originally, I had a severe bout of distal/left sided colitis. This started in September last year when I started to be unwell.

Skip to about a week before I was admitted to hospital. I felt like I was dying even then, the pain in my side was pretty unbearable, and I was so nauseas all the time that I couldn’t eat a thing. I managed a couple of Fortsip nutritional drinks, but really, it was hardly anything. I was sick each time I had a drink so was getting very dehydrated. The meds I had been given were useless and I knew that I was deteriorating rapidly. My temperature spiked every night and I could hardly bring myself to move from my bed. My husband had to help me to the toilet, and the pain was so severe on the loo that I would cry and panic. My husband will never forget those days for the rest of his life.

The feelings that go through you when you feel you are dying, are awful. My dad kept coming into my mind as I begged him to do something from “The other side”.( I kept speaking to dad on a regular basis throughout my hospital stay). I was scared to sleep incase I wouldn’t wake up again. I started to have problems urinating, and when I went for a wee, I would run the tap or whistle ( things I remember from my dad years ago to help the process). It didn’t really work and I only trickled or started and then the flow would abruptly stop.

This was when my husband took me to A&E, and I was home 10 weeks later.

I remember the surgeon coming to see me and telling me that I had been ill for too long and that I looked ill and was ill. He said he needed to operate very quickly “Tomorrow ” he said. ( it was Saturday so I was surprised it needed doing that urgently). I told him that I was petrified a wave of sheer panic ran over me. He said that he would do a CT scan, and depending on the results we may have a few days to prepare. Needless to say, I didn’t get the few days. I had half a day with my family, they kept my spirits up and I even remember laughing at one point. Hysterical probably 🙂

A stoma nurse had time to come and see me, she was lovely and I am grateful for that.She told me as much as possible within a short time, and marked my tummy with a dot to show the surgeon where we had decided the stoma would be. I will never forget the porter coming for me, it was surreal. He took me to an empty pre surgery bay, I assume it would have been busier had it not been a Sunday. I saw people walking in and out in their scrubs but they didn’t come to me. I had too much time to think and I didn’t like it one bit. Eventually a doctor came to me and said that they needed time to get some blood for me, as I had an antibody in my blood that wasn’t “in stock”.If there wasn’t any in the hospital, surgery would be delayed. There was a big chance I would need blood, so they wouldn’t operate without it. They then took me to the recovery bay while they waited for the blood. I just lay there, watching people coming back from surgery, and doctors and nurses tending to them. No one really spoke to me as I was just there waiting. It was pretty awful, as I had already waited in the previous room. I hope someone might read this and realise that patients awaiting surgery, really don’t want  lots of delay and to be left alone.

After what seemed like hours, I was wheeled into the pre-theatre room to be prepared for surgery. It was quite a small room but was pretty full with doctors , nurses ,anaesthetists . They informed me that they were going to put an epidural in and got me to sit on the edge of the trolley. I was so scared I asked if I could be sedated before I went through into theatre. They obliged there and then, it was brilliant sedation because I remember nothing else until I was in the high dependency unit.

I woke up and immediately had the thought that at least I had made it through surgery. My throat was the most painful thing, and I could hardly talk or swallow with the tube down my nose.I thought that I might not be able to cope with this, knowing I had no choice. My family came to see me, and the memory is slightly vague, but so was the visit as I was so sleepy. I remember some words and hugs which I mention in my first blog. Later I remember a nurse coming to me and all I seem to see, was her unravelling lots and lots and LOTS of wires , that were attatched to my neck mostly. It was very strange, because she seemed to be doing that for hours.

A doctor came and said that I had had a central line put into my neck vein, and that it hadn’t been fitted correctly and some of my vitals were not on the screen. He said he would have to take it all out and replace it on the other side. I was still a bit dazed so just nodded. He covered my face with a plastic see-through sheet, and am sure he covered his own head with one too, was I imagining this I wonder? I must ask. Next he put a local anaesthetic in my neck and there was a lot of pulling and pushing. It was dark and the sheet made me so hot, I was struggling and was scared, but eventually he finished that side and transferred the wires, then took out the other central line.

Again the nurse seemed to be ages messing with all the wires. I remember some other patients coming and going, although there are only four in HDU at one time with 2 nurses. I have to admit, you feel quite safe knowing someone is there constantly watching you. They were all exceptional and cared for me so much.

They let me have sips of water, and I was so happy when they took out the tube. What a strange sensation, they tell you to take a deep breath then exhale while they pull it out. Just when you think you can’t exhale anymore, out it comes. Then came the first cup of tea, I thought I would just glug it down, but was shocked when a few sips were enough. They explained that I had ileus, which is when the bowel shuts down and goes to sleep through being handled during surgery. It can take a while to wake up so I have to be slow with food and drink. If I am constantly sick, in goes the tube again. I was asleep when it went in the first time, so the thought of being awake to have it put in filled me with dread.

I was on the high dependancy unit for three days before I went on the ward.

 

ON THE WARD

Hello again, so after a few days on the high dependency unit, with my tube out and drinking the odd sip, I was transferred to the ward.

I still felt very unwell, and had a catheter in so I didn’t need to go to the loo at all. The nurse took a look at my scar dressing and decided to remove it. All was well and the staples  seemed ok. With it being an emergency operation, I had to have the open surgery option rather than the laparoscopy option. Recovery is usually quicker and less painful with the second option, which involves small incisions with cameras to guide the surgeon.14089087_10207147621673412_5092671161253933699_n

As you can see, its pretty Frankenstein-like. I had about 26 staples from just above my belly button ( they kind of cut around the belly button) to right in my pubic hair ( they shaved me yuk, very spiky when it grew back, am used to waxing)

My stoma is on the right of the picture, under the ileostomy bag. I remember the day the stoma nurse came to show me the ropes with cleaning and changing the bag. She was amazing and the first time, she was happy to do it for me because I couldn’t bring myself to look just yet. I needed time to psych myself up.

It was agreed that the next time, I would watch and my husband was invited to see for future helping. I am very lucky to have a wonderful supportive husband who is more than happy to get stuck in. The day came, and I was nervous. The bag was removed and I sneaked a quick look to start. It was a bit like a dream, could this thing really be part of me? this was my small bowel coming through my skin !!!

Sorry the pics are large, its just how they appear.

It is so hard to keep your skin healthy under the bag, I leaked a few times too as I got used to sticking it on properly. Because I ended up with the fistula, it was decided for me to have a two piece bag. It meant I could fit the base plate first, and see where exactly to fit it and see that it was correct before the bag went on. I still had the odd leak and the fistula caused pain and sore skin, I was given morphine when the epidural was taken down, so this helped.

Next was my staples to come out. This was painful for me, I don’t know why, especially the ones at the bottom. I soon realised why. Over the next few days my scar started to open at the bottom into a deep hole. This was awful. It is called wound dehiscence. Nobody really knows why some wounds do this, but I needed the wound to be cleaned and packed every day with very sterile dressings .It has taken 6 months so far to heal, and is nearly there now, I had district nurses for months and then trips to the GP practice.

Back to the ward….I was still very unwell and was sick a few times. I struggled to walk about and was slipping into a depression.I cried often, and felt too ill to eat and drink. The ward staff were so nice, and tried to encourage me but never forcing me. My catheter was removed and I used a commode or bedpan at first. Then something happened that frightened me, I started to pass a dark horrible bloody liquid from my back passage that wasn’t supposed to be attached to anything. They sent me for a CT scan to see what was happening, I started getting spikes in my temperature too.

All this was very scary, I will let you know the results of the CT scan on my next blog, and what it meant for me……