Trying to control high anxiety-#WorldOstomyDay2018

It is #WorldOstomyDay so I thought I would write about something that affects many IBD and stoma patients, which is anxiety and / or depresssion. It is a taboo subject that needs more exposure so instead of telling my stoma story I thought I would share this important message instead.

 

Knowing you are booked in for surgery is a scary time, no matter what surgery or how many you have had previously. The nearer it gets, the more nervous I am. I have had other scarier surgeries where I was extremely ill, but it doesn’t matter, to me this next one is just the same. One of my worries about surgery is getting through the anaesthetic, I always think that maybe I have developed a heart complaint since last time and I might not make it. I know it is probably irrational ( notice I say probably, another one of my things is if I think it will go ok , I jinx it) It doesn’t matter that I have a pre op, that just makes me think they missed something.

 

I have high anxiety levels, when I had counselling they said it was very high. I have lived with anxiety for years and had panic attacks if I was in a situation my mind couldn’t cope with. Luckily with meds the panic attacks are much less severe ( I used to actually be sick and that caused more panic when I was going anywhere in case I was sick). This seemed to all start when the ulcerative colitis started, I would panic incase I needed the toilet when out, or if I started with a flare I would worry how ill I could become, as my first few flares were terrible and I was in hospital for ages, and being in my early twenties and never having been in a hospital before, I found it very overwhelming and scary. I thought I would die. They didn’t know what was wrong for a while and it was awful, so I am sure that is why I became the way I did. It ended up that if I was going anywhere away from my normal life, the panic would set it. I went to see We Will Rock You in London with some friends and remember sitting there in this big theatre feeling very sick indeed and looking around searching for toilets. I got through the first half but in the interval we all went outside for a drink and a break, I just burst out crying saying I couldn’t go back inside the theatre bit. I insisted I would be ok in the bar on my own and waited there for them. I rang my sister and told her what was happening . She wanted to come and fetch me ( she lived in London at the time) but I decided not to as my stuff was at the hotel. It was weird that I felt slightly safer in a very quiet bar than go back into that theatre again.

The panic feeling lasted all through the night and all the next day, and it wasn’t until I got home that I felt better. This has happened to me many times and I would even turn down some invites away because I just couldn’t control the attacks.

I remember taking a plastic bag out with me on the simplest of nights out, just in case, and the counsellor said I was using it as a crutch and I needed to stop taking one out otherwise I wouldn’t get better. I totally understood the reasoning and gradually, along with meds ( although I think the meds did most of it) I improved dramatically. The only problem is I don’t ever want to come off them incase it returns, a vicious cycle. I have had to increase them occasionally since my initial surgery as depression sneaked in and I went through a very dark time in the hospital. You can feel yourself slipping, I have never had it before but you can feel it coming like a dark cloud and don’t know how to stop it. I couldn’t stop crying either and I wasn’t the only one on the ward to feel like this at times. I am glad that I am ok now, and I understand how easily depression takes over. It doesn’t make you a weak person, it means you are going through something that you need help with at that time.

The kind of surgery that I have had is traumatic and has big implications on body image, anyone who has had a major surgery, especially one where your body has been altered ( and I don’t mean cosmetic ) is a candidate for mental health issues and needs all the support they can get. I do think that we should get some form of counselling BEFORE the surgery and after. I know if it is an emergency then that can’t happen, but in my case I was an emergency, but knew stoma surgery could be a possibility the weeks leading up to it, and the doctor must have known that too, but it ended up being a very quick chat with a stoma nurse whilst I was on the ward ready for surgery the next morning

These are life changing surgeries and more pre care needs to be done to help patients come to terms with what will happen to them.  I also feel that having IBD is life changing and more needs to be done to support those with these hideous diseases. I have been there and it’s not pretty. Helping the patients make the decision for stoma surgery is a must, you really don’t know if you are making the right choice to have one or not. If you had asked me if I would have had surgery sooner, the answer is a resounding “YES”. I was left to become so ill that the surgery became an emergency and the decision was taken from me.

 

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. Bags are 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.

 

Does my bag look big in this? What about the rest of me?

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I thought I would chat about body image. We all worry, me too.

It has come to my attention that we all spend too much time worrying about the way we are perceived by others, and that includes how we look. Now, I am a born worrier about everything so I speak from experience in the subject.

When I was younger right up until I hit 40, I would say I was pretty skinny. So did everyone else. But, although a lot of people said they wished they looked like me, there were some who were downright rude.

One friend said she wished she was thinner, ” Not quite as thin as you though Clare” hmmm nice. How would they like me to say ” I wish I was fatter, not quite as fat as you though” that would go down very well.

I went to see a comedian in Blackpool years ago, and we were a loud table so he picked on us, actually he picked on me. He invited me onto the stage, big mistake.

” lets move the mike stand so they can all see you”

“I am going to tell a joke, you’ll laugh your tits off, oh you’ve already heard it” Yes I know, its funny, but can you imagine a teenager with hangups on that stage? I was distraught.

Ulcerative colitis then appeared, and my body image changed again. Skinny legs and fat belly, lovely. Bloating with inflammatory bowel disease is not nice, I had a few people ask if I was pregnant on many  occasions. This pot belly look lasted until surgery really when I was 49, but I also got more meat on me elsewhere. I liked the fact that my boobs grew, but not my arse or hips.

I have also been “blessed” with pale skin and freckles and moles. I would love to be a nice tan colour but it takes 2 weeks in Corfu laid out all day to go a great shade of pink. Fake tan is better nowadays but I do worry that I have damaged my skin over the years. I have jealousy when I see the perfect bod.

I have crooked teeth, ( I bet you are dying to meet me, I sound gorgeous), I haven’t smiled on a photo with my mouth open and teeth showing for years,except when drunk and I don’t care, so now I am doing something about it. My top brace is going on in a few weeks.

I was about 10 stone 10 pounds before surgery, which is reasonable as I am 5ft 7.5 inches, when I became poorly I went down to under 8 stone and ended up with saggy skin and old persons hands. We can’t win, there will always be something . I started to put weight back on after surgery and got to about 9 stone, I liked 9 stone, I felt ok, my skin fitted again and because my large bowel was removed my belly was quite flat, I thought ( wrongly I might add) that because the bowel was gone, my pot belly would be forever gone. But alas , something else has moved in. I can’t stop eating and am now 11 Stone !!!!???? and my belly is returning. Whats that about???

I turned 50 last year, and about 2 days after, received a flyer for Saga over 50’s. I felt older than old. How could I be fifty? I was in the OAP bracket for SAGA flyers.

I have fine hairs above my top lip, I am not sure whether to have a top lip wax, but I might end up with a red rash, do I keep the moustache or opt for a sign saying ” I had my lip waxed, look here”

Not only am I looking to see if my stoma bag is showing through my clothes, what about all the rest of my baggage?

So far so good with the bum thing

 

I forgot to let you know how one of my previous posts “A pain in the arse ” was going.

Very good is the answer. I went to see my surgeon about the small hole that leaked after the proctectomy. It was called a sinus and can heal itself sometimes. Other times they need opening and draining, sometimes they need much more serious healing strategies, like using skin from your thigh and covering the scar with that. I have no idea how any are done and how they work, but needless to say, I hoped it would be the first option.

Well , he said he would book me in for an MRI of the pelvis and rectum to see how superficial the sinus was, and go from there. I had been leaking for months now so was pleased something was being done. My MRI wasn’t immediately and my next appointment was for the end of May, so still a while to wait.

Well would you believe it, the leak stopped dead about a week before the scan, and hasn’t reappeared since. I am pleased and just hope it stays that way. My appointment to see him with the results has been moved to August anyway so its a good job.

So the moral of the story is…. have faith that things will work out usually, and not panic about what could be.

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.

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.

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.

 

 

 

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.