Tag Archive for: surgery

Recovery

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Hello everyone

I thought Id do a little update, later when I’m fit and well I’m planning some posts, vlogs and helpful stuff re stomas and ileostomies etc

I’ve also had some amazing offers to do some work and events to raise awareness and money so I’m very excited.

But I’m still recovering and so trying to not take on any stress. So my post today is just a little update.

Recovery from a major operation is hard slog, man. Your whole body has taken a beating and it’s a slow and steady recovery. You are taking so many different drugs, have lines in and out of your body. Your legs are bound in surgical stockings and you are laid up in a hospital bed.

The pain is a toughie. For the first three days I had an epidural in that I could top up as and when I needed it. Ill be honest, I didn’t think it was doing that much… I thought I was a proper bad ass.

Seriously, I was walking to the toilet two days after surgery thinking ‘I am so hard’

Then they removed the epidural.

And I cried.

A lot.

Oh my god! I’ve never felt pain like it!!! My wound felt like it was blazing on fire and my whole stomach area felt like I’d been beaten by a rhino. My back was sore, my head hurt, the passage of food through my gut felt like a thousand snakes…

Now I’m getting on top of the pain, I’m on strong painkillers but the time between them is widening each day. Last night I didn’t wake for pain relief which is the first time since the op so I’m starting to feel like I’m turning a corner.

I’ve had a lot of issues with my ileostomy bag leaking since the op. This is hard to deal with. The first time it happened I cried a lot. I felt so embarrassed. I felt like a baby. I looked down and there was just waste everywhere and I flipped. I got so upset and my mum was here. She got really upset too. Not that it had happened but that I was upset.

Since then it’s happened a few times and though difficult, it get a little easier each time. Well perhaps not easier but less shocking, I’m more adaptable and I know how to deal with it now.

Yesterday morning the stoma nurses tried me with a different bag. It’s a two piece system and has so far been a massive success. It feels really solid and has had no leaks – I feel quite confident on using it.

I’ve had a couple of set backs in the last few days too. The first is I developed thrush in my mouth and throat. This is gross. It’s apparently quite common after surgery and also due to the large dose of antibiotics I received after surgery. It sounds like not that big a deal but because its so bad, it’s stopping me eating and drinking. My throat is so sore and feels like its full of bits and my mouth tastes disgusting. Because I’m not eating and drinking, my weights dropping fast, my blood pressure is low and my output from my bag is just green fluid which is not good!! I am on a remedy for the thrush though so hopefully it will clear up soon.

The other setback was a bit of a weird one. I had a full blown panic attack.

I’ve not had a panic attack before and kind of thought it was mental rather than physical thing so it was a total shock. I was sat with my stoma nurse and she was cleaning my stoma, it was a little sore but ok. I started to feel really queasy and thought I was going to vomit. All of a sudden I just couldn’t catch my breath, she got me to lie down on the bed and my hands, lips and legs went numb. I lay there gasping and my hands froze into claws – I had no control over my body, it was like I was frozen in fear.

After five minutes it passed and I was totally back to normal! They said my body was reacting to stress and it was a panic attack. I’ve never felt anything like it, and at the time I didn’t feel particularly stressed out or panicked. It was terrifying and I hope it never happens again. I feel for anyone who experiences anything like this now – so scary!

Alongside recovering from surgery I am still on the dreaded steroids. I have to taper off from the IV high dose steroids I’d had the week before surgery. So I’m dealing with all the nasty side effects of the evil prednisolone too!! Palpitations, insomnia, anxiety, hairiness and many more. It is shit but necessary. My body will have stopped producing cortocoids and so I have to taper off in order to allow it to start producing them naturally again. Because I take the steroids I also have to take two other medications, one is a calcium supplement the other is a gastro tablet to avoid ulcers.

But I AM off all my Ulcerative Colitis meds which feels AMAZING. Once I have tapered of the pred, I can come off the other meds which means apart from any pain killers I may need, I could be totally med free!!!

This is an awesome thought…

So tonight I was finally released from hospital – it’s been 7 days since my surgery. I pushed to be discharged as I had just had enough of being in hospital!! Also I knew I had a great support system in place here at home and that I believe ill recover better here. Timm and I run our photography business from home – The Picture Foundry and so he is about every day. He is doing all the school runs and taking card of the kids and so is here to cook and help take care of me. For times when he needs to be away for work I have my amazing, wonderful kind friend Caroline taking over and looking after all of us. I call her my back up Timm because she is so much more than just a friend. She is someone I can rely on for everything. I just hope in the future I can support her as much as she is doing me right now. I am blessed to have her and her partner Jamie in my life.

My mum is also on call to help out. She has been great in having the kids, helping Timm with cooking and cleaning and visiting me. It’s been a relief to know that Timm has had support from others. And mums cooking meals in advance for him has been just fab!!!

Getting home was a tough slog. The walk to the exit of the hospital exhausted me so much I thought I’d fall asleep! We picked the kids up from Caroline’s on the way back – I wanted to go in and collect them and it was good. But it totally took it out of me. We stayed a few minutes and then I was done! I just couldn’t concentrate and needed to be in my bed.

So I came straight home and home felt WEIRD after two weeks away!!! I came to bed and Timm sorted all my meds and put the kids to bed. Then he came and we just had a quiet cuddle.

Bliss.

Though I’ve seen him every day we haven’t had a second alone. So the best feeling in the world today was laying in Timm’s arms, eyes closed and enjoying the quiet, sure and calm feeling that I was home.

Love Sam xxx

Day two after op

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Helloooooo! Well today is two days post op – it’s been a tough couple of days and I’m struggling a little but thought Id attempt a post.

Tuesday was op day, thanks to Mr C for updating the blog. I went down to theatre around 2pm and after getting my sexy surgical stockings on and going through consent forms etc, the anaesthetists put in an epidural for post op pain relief. She was fab and from Barnsley and sounded *just* like my sister in law Nancy so it was so comforting having her with me! We were talking whilst I got sorted and so as I drifted off under the general anaesthetic, she told me to imagine laying on a beach in Australia next to my sister! What fab personal and kind care!!!

I awoke in recovery a few hours later to my first question ‘Is Caroline here?’ She wasn’t but whilst I was out I had overheard a nurse who sounded just like her discussing the programme Doc Martin… I have to admit that I was a little disgruntled that she was talking about Martin Clunes over talking to me!! Haha!!! Poor Caroline!!!

I had a little pain when I woke, the nurses soon got it under control by altering my epidural and then Timm was there. It was amazing to see his face smiling down at me, he held my hands and made everything feel better.

Around this time there was some concern over my lactate levels, (genuinely described as ‘deranged’ LOVE it) they were on the high side and so needed to keep me in recovery for a whole longer, but Timm could stay and so all was fine. A couple of hours later the levels were still rising and so the decision was made to move me to the High Dependency Unit. Timm went home as he needed to get back to the kids and the staff needed to do their job.

I was moved to HDU which was a little scary and movie like – they explained things really well and though I was frightened, they kept me informed and I felt safe and comfortable. I had a nurse with me all the time and the care I received was just outstanding. I was covered in monitors, tubes and wires including an arterial line that was inserted into my wrist and SEWN into place!! Eek!!! But they did give me a local and so I had no pain.

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Wednesday saw my levels improve and so around 2pm was moved back to my ward to recover. My potassium levels were off and so I still had to keep an IV with potassium in it. I had my epidural for pain relief that I have a button to add extra relief if needed and a catheter in as I couldn’t get up and down to the loo.

I felt shattered but on the whole, ok!! The nurses are fantastic here, so warm, caring, professional yet open. They make a difficult time so much easier, it’s embarrassing to be cared for, washed and have your toilet needs to be sorted by another person but they’re so relaxed and laid back about it that you feel at ease. It’s an amazing skill to have and I salute our nurses!!

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Turns out IV potassium BURNS like its on fire!!!! Really really hurty arm after this one so trying the oral version (tastes awful but not painful at least!!)

Wednesday also saw my meds being dropped! Hooray!!! The 8 Pentasa I have been taking a day since June have been stopped! I know this may not seem like a big deal but it really gets to me having to take so many tablets every day so it felt like a real landmark. My IV steroids have been replaced by tablets that we have to taper down from now over the next few weeks.

To be honest, I think I was still on a bit of a high on Wednesday – Timm and Caroline visited me in the evening and I think they were surprised at how well I was. I mean, I felt exhausted and drained but emotionally I felt relief, happiness and quite elated that the ‘hard bit’ was over. I didn’t sleep particularly well but on the whole I felt in a good place.

So it came as a bit of a shock that today (Thursday) kind of hit me like a thunderstorm. It’s been a bit of a roller coaster today. It’s been kind of tough – there’s a couple of small problems with my stoma – it’s quite small and flat and it’s close to my wound. This means that the stoma itself doesn’t have enough of a ‘spout’ to sit in my ileostomy bag and is leaking.

This afternoon it leaked for the first time. My mum and sister were visiting and I looked down to see a lot of waste all over my stomach. I was devastated. I think it was shock more than anything and I just burst into tears. The nurses were AWESOME they came and cleaned me up, wiped away my tears and offered me comfort, support and kindness.

I was embarrassed and the reality of what was happening hit me like a ton of bricks. I felt like a baby, I felt dirty amd humiliated.

I had a big cry. (A snotty Chinese baby cry!!!!)

Then I manned up and got it sorted! The nurses cleaned me and discussed why it was leaking. They told me to trust them and let them care for me. I did something I’m probably not great at doing and let go of control.

Unfortunately I have leaked quite a few times since. The lay of my wounds mean that my stoma is leaking INTO my wound so I’m feeling very sore and I’m having to be cleaned a lot.

It’s just going to be a bit of a learning curve, trying different bags and seeing what works for me. They say it will be much easier once all the swelling goes down and my wound heals.

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The wound!!! Scars are cool, right?!

Timm and the kids came to see me tonight which was fab but a little overwhelming. It was great to see them but difficult as I don’t want them to see me upset or in pain. Once they’d left I had a visit from my two oldest friends Tania and Hannah and had a bit of a weep. I just felt really emotional and ragged. I had to let go and it was good to have my old dear friends there to make it better.

What I’m finding from this situation is that my struggle is in being out of control and I need to learn to accept this and be ok that sometimes you can’t paint a smile over it. Sometimes it’s ok to say ‘I’m struggling’ because you know what? It feels good to have people around you who love you and who say ‘that’s ok, let me help’

So ill leave you with a couple of things, firstly is the shot of my ileostomy pouch…

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And secondly, a nurse told me I should name my stoma!!!

Any ideas?

Sam xxxx

Post op

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Too tired to blog but I’m back on the ward. Spent the night in HDU but all ok now.

Very sleepy but pain under control with epidural.

Will try to update soon

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Oh and dude… I have no belly button any more!!!

Sam xxx

Surgery day is upon me

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After last nights epic transfer stress (told me to pack up at 6.45 and I finally got into bed at the other side at 1.30am!!) I’m finally in the Northern General. I had a terrible nights sleep, my fears and anxieties just got the better of me and I spent a fair chunk of the night in a state of panic.

This morning the surgeon has been to see me and has made the final confirmation that surgery is definitely the right decision and will be going ahead today! I don’t have a time yet but I’m on nil by mouth and they’re attaching IV fluids and the like to me so I’m thinking it won’t be too long.

So how do I feel?

It’s odd, at times I feel total abject terror. The thought of the actual surgery is such a frightening thought – I’m scared of the whole cutting and removing and all… I’m frightened of pain and if there’s difficulties. I’m frightened of this feeling of being alone. I have the best husband, kids, family and friends and I’m so well supported. I’m overwhelmed by the kindness I have been shown. But in these hours of waiting and those long, dark evening times I’m so very alone with my thoughts.

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But on the other hand I know this is the right thing to do. It’s the start of a journey that should end in me being well. I’m excited to think of a life that won’t include Ulcerative Colitis. To think Ill be able to plan in advance without the fear that Ill be crippled by a flare up.

I’ve said for years that I really just want to be a ‘normal’ person without having to take a host of meds to function. Some people who know me may say Ill never be normal but hey!!!

So this morning I’m going to sit, try to relax and think about the things in my life that make me blessed. My husband. My kids Charlie, Ellie and especially Thom! My family. My friends.

The fact that we live in a country that means my care is free! I read American IBD blogs and I’m shocked at the stress they endure on top of their illness with money and insurance.

I know it’s a terrible clique but I do feel that today is the first day of a new life for myself and my family.

I’m on the emergency list which means the surgery is imminent but if another priority comes in ahead of me, my surgery will be dropped back.

I’m quite weepy still today, I wish I could say I’ve got my big girl pants on and a brave face but more often than not its a slightly panicked, puffy moon face with red eyes!!! I swear in my head when I weep I look like this…

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In reality it’s more like this…

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Thank you for all the folk reading the blog, I’m blown away. Yesterday over 400 of you were reading and the numbers are going up all the time. It’s amazing and I’m so honoured to have you share my journey with me. The whole reason for this place is to break the poo taboo and to get people talking about IBD, Ulcerative Colitis and Crohns – I just hope my ramblings can help others. The other reason is that getting it all down is very cathartic for me. I know some people might think I share a little too much but I really think if I’m going to do this I need to do it openly and honestly.

So Ill see you all on the flip side! Still rollin’ with no colon!!!

Much love

Sam xxxx

Day seven in hospital

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So today I’m still no better, the drs, nurses, my family and myself all feel that all the medication has been given the best possible effort and it’s not working for me, so surgery is the right option for me now.

I’ve seen my consultant and my specialist IBD nurse and they have explained the surgery and what’s going to happen now.

I’m still at the Hallamshire and I’m just waiting now for a bed on the urgent surgery ward at the Northern General. Once I get a bed Ill just be on a priority waiting list for surgery so it could be any time in the next day or so.

My IBD nurse has been to measure me for where my stoma will be fitted… It’s the big black permanent marker spot!

ostomy markings

You can read a bit more about the type of surgery I’m having here

So it’s just a waiting game now! It could be any time in the next few days. I’m feeling an odd sensation of fear and relief. I’m scared about the surgery, about the pain and any possible complications. But I’m relieved that I can see the light at the end of the tunnel.

Surgery is a huge decision and I just want to make sure that I get across that I know it’s not for everyone. For ten years I have lived with this disease, I’ve tried the meds, I’ve lived through so many flare ups and hospital stays. I have cried too many tears and been through enough pain, humiliation and embarrassment. I have dealt with side effects of meds from moon face to palpitations, depression to insomnia.

And so now is the time to move forward. Get this bowel out and move my life onwards and upwards!

I’m still going to try and blog, but if I can’t then Ill make sure Timm updates you all to how things are going.

If anything changes later then Ill possibly update myself, but till then I’m going to try and rest up as I’m feeling totally wiped out and I need to prepare myself physically and mentally for the upcoming days.

Much love

Sam xxx

Day three in hospital

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Day three in the Big Brudder house… Man, I can’t even do accents when I’m writing them down!

Yesterday ended with a visit from Corinne which was lovely and then hilarious chatter with the other three ladies on my ward. One lady has some dementia issues but had this moment of clarity that was so beautiful it made me cry. She was saying that she’d had an accident which meant she wasn’t mobile and had to exercise and get her legs working again.

She said her husband would help by them each standing at one end of the kitchen counter and then he would sing to her to make her walk into the middle to meet him. Is that the sweetest thing you’ve heard today?

Later on I was listening to her chat with a lady who had taken her hearing aids out. Bloody hilarious!!!!

So this morning was more blood tests, more meds and more pooing in cardboard trays… So glamorous!!

I’m really missing my kids today, which is a surprise to us all seeing as its the end of the summer holidays! You’d think I would be glad of the rest! But I spoke to them all this morning which was lovely and Caroline is taking them swimming today and bringing them up visit tonight. I can’t wait to see my three babies!!

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The surgeon came to see me this afternoon. He says that they want to give me two more days on the IV steroids and hope that it settles my colitis, if it does they will book me in for surgery as an outpatient for in the next few months. If it doesn’t then they may want me to go in for surgery in the next week!! Eek!!!

I’m scared but almost relieved. I’m glad that be it in a few days or a few months that I can see an end to the disease. I think that’s one of the hardest thing to deal with IBD. It’s a lifelong condition and the inability to to know how you will be week to week, month to month or year to year makes life so hard. So knowing that they are taking this seriously and that surgery is definitely a viable option makes me see a well searched for light at the end of the tunnel.

He did throw me a curveball though before he left. Apparently there is a ‘controversial’ study that says that an appendectomy can hugely reduce symptoms of Ulcerative Colitis – especially as the main area of my disease is in left side of my colon. He says there is no hard evidence that it works but it could be something to think about and look into. So I can see some major googling from me in the next day or so!

I’m not feeling any better yet which is a worry, the steroids should be helping to relieve symptoms but there’s no improvement yet. Today I had to have some extra painkillers and anti sickness drugs as I was really struggling.

I moved wards today, the ward I have been on shuts down for the weekend so they moved me onto the gastro ward – it’s kind of nice to be around other people who have similar problems.

The kids came to visit which was fab, they wrote me a letter, gave lots of hugs and Ellie even left me Giraffey to look after me! It’s her number one teddy so I’m feeling very blessed! It was lovely to see them, thanks so much to Caroline for looking after them and for bringing them in. I have to admit to a quiet weep when they’d left – I’m missing them so much and it was hard to see them leave.

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Also had a visit from my mum and friends Martin and Claire – Martin asked what he could bring for me and I suggested a magazine… I realised you should never ask a man for a magazine as this is what he brought me!

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Well at least he made me laugh!! Almost as much as when he asked the nurse her inside leg measurement.
Don’t ask…

So Ill update again tomorrow. Thanks for reading.

Love Sam xxx

Why I am choosing to have my bowel removed

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My name is Sam Cleasby, Im 32 years old and I want my bowel removed.  That sounds like a pretty drastic thing right? Well yep it is.  I am in the midst of a journey that I hope will end with my large bowel being removed from my body.

I have Ulcerative Colitis.  I was diagnosed with the disease ten years ago and in that time I have had numerous hospital admissions, many colonoscopies (camera up the bum to the layperson!), many different drugs and more than a few poocidents…

My drug of choice is currently Prednisolone Steroids.  They are pretty amazing at getting the disease under control but unfortunately come with a barrage of side effects from insomnia, weight gain, the very awesomely named ‘Moon Face’, hairiness and general mentalness (think anxiety, depression, psychosis, thoughts of suicide)  These drugs stop your body from creating corticoids and so have to be slowly tapered off over a matter of weeks or months.  I was nearing the end of a two month stint on Pred when I started with another flare up and so my dose that I have carefully tapered down for weeks has been jacked right back up there.

sam cleasby

My other drug options are immunosuppressant drugs such as Azathioprine – Immunosuppressants work by reducing or suppressing your body’s immune system. This will then stop the inflammation caused by ulcerative colitis.  The drawback is they affect your whole body, not just your colon. This may make you more prone to infections.  Like all drugs Azaithioprine has possible side effects, one of the scariest is an increase in the risk of cancer.

Another drug option is Inflizimab, given as an infusion, it works by targeting a protein called TNF-alpha, which the immune system uses to stimulate inflammation. This is the serious big boy drug – one in four patients have an allergic reaction to this drug.  Again it increases the risk of cancer, specifically lymphoma in patients.

Now I need to say here that I am in no way against drug treatment, I know they have their place and are the right option for many people.  If you are researching the different drugs for yourself, be sure to speak with your doctor or specialist nurse.  All drugs have side effects and if you googled every medication you take it would terrify the life out of you.  These drugs control the disease in so many people and if it is right for them, then I salute them.

They are not right for me.

I do not want to put medication into my body that may treat the colitis but could give me worse things than what I started with.  Cancer is a biggy.  I do not want to take anything that increases my chances of getting a disease that is more likely to kill me than the colitis is.

And so I come to the other option.  Surgery.

In a way I am lucky, I have Ulcerative Colitis.  That means that my large bowel is the only place where the disease is located.  People with Crohns can have the disease anywhere in their digestive system.  This means that surgically removing my large bowel ‘cures’ Ulcerative Colitis.

Surgery involves permanently removing the colon – a colectomy. As part of the operation, your small intestine will be re-routed from the colon so it can pass waste products out of your body.  Initially this will be into a bag attached to my stomach, then in a further operation, surgeons will create a pouch out of my small intestine that is attached to my anus so I can go to the loo in the same way as everyone else!

For some, surgery is the last option.  It is the time when they are so poorly that there are no more drug options.  Or it is an emergency operation – a life saving operation.  For me it is elective.  I am not at the point where my bowel is close to perforating, nor have I run out of drugs to take.  But my quality of life is taking a bashing here, Ulcerative Colitis affects every part of my life.  It affects the relationship with my husband, it affects my children when I am tired, sick and suffering.  It affects work, friendships, my mental health, my confidence.  If affects how I see myself as a woman.  It affects the choices I make in life.

I don’t want to live a life that is ruled by the toilet bowl.

And this is why, for me, the best option is surgery.  Take the bad boy away!! I am not making light of the decision, I know it is HUGE and life changing.  I have researched so much and cant find a single person who doesn’t say that it is the best thing they ever did.

I have seen my consultant today, he is a great bloke.  He listens and cares and gives me all the information for me to make an informed decision and then supports me in moving forward.   I have an appointment with a surgeon on the 3rd September to discuss my options and hopefully make a decision on whether he thinks I am a candidate for surgery.

So here’s hoping! Fingers crossed they will agree with me and whip this bad ass into shape!