Surgery day is upon me

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

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

Girls night in hospital

Just wanted to add another quick post today…

Tonight three friends came to visit me and bring ‘girls night’ to the Hallamshire. I’ve been feeling so low and seeing their smiley faces and bags clinking with non alcoholic wine (real wine glasses and everything!) posh crisps, gossip and homemade flapjack just made everything a little bit better!

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I feel so blessed to have such awesome friends. Thank you ladies, you have out a smile on my mardy face tonight!

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I know I’ve said it before, but I will say it again, every message, every text, every funny photo or kind word, every night time game of scrabble, every piss take, every bum joke… It means the world. Thank you all so much.

Love you!!!

Xxxxx

Day six in hospital

Sunday in hospital. I didn’t sleep well last night, I was woken three times by doctors and nurses as they were concerned about my blood loss. They’re still wanting to wait till tomorrow though to give me the full amount of time on the IV steroids.

I can’t believe I’ve been here since Tuesday! People keep telling me to enjoy the rest but that’s so much easier said than done. I feel dreadful and I’m on the loo 12+ times a day. I’m constantly being prodded with needles or having blood taken and my concentration is shot!

I keep trying to read or watch a film but I just can’t stop my mind from wandering. I’m just wishing for tomorrow so Ill know for definite what the plan is. It’s the waiting that’s so hard. I’ve been really tearful today, a mix of the steroid side effects and just generally feeling down I think.

I’m on my third canula of the week so they can administer the IV but unfortunately my veins are starting to suffer and it took three attempts to get one in today. I’m starting to look like a pin cushion!

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As there’s just not that much to comment on at the minute, if anyone has questions then please feel free to ask away and if I can answer, I will…

Feeling a bit disgruntled today as when I moved onto this ward there were signs saying visiting hours were 2-3.30 and 6-8. We asked as on the other ward it was 2-8 and were told the same applied on this ward. Timm also checked that the kids were ok to visit and were told it was fine.

Today Timm and the kids came at 4pm and we were asked to leave. Apparently patients have complained of being unable to rest so the visiting hours are now as signposted. But no one said anything before! We went and sat by the lifts as the kids and I were upset and went past so many beds that still had visitors by them.

I understand that the staff need to ensure patients are being cared for well but surely it has to be one rule for all?

I feel like complaining about all the times I couldn’t rest rather than just sucking it up as I have been! Maybe Ill complain about the man who has what sounds like chipmunks singing Country Road take me home in a techno style as a ringtone that goes off full blast 20 times a day. Or the man who keeps setting off the alarms when he tries to sneak off for a fag! Or perhaps the nurses who pranked one another today as one is leaving and sprayed shaving foam all over her and ran up and down the corridors shrieking!!!

Urgghhh sorry!!! Rant over! It’s just hard enough being here and when I’d looked forward to seeing Timm and the kids all day and then had to leave I was devastated.

In nicer news, Timm and the kids made me a photo album/scrap book with loads of family photos and nice messages in it. That’s cheered me up no end and no they’ve gone I’ve just had another look through and another little cry. Here’s a few snaps from it…

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Looking forward to a visit from my awesome best mate Caroline tonight, she has been a star in helping out with the kids, visiting me and just generally being a fab support.

Tomorrow should be news day – finding out the plan to move forward. If I can’t post Ill get Timm to keep you informed!

Big love

Sam xxx

Day five in hospital

I’m afraid there’s not much to tell today. I can’t really think of anything inspirational, interesting or witty to say!!

That’s the worst thing about being in hospital I suppose, there are days where all you can do is swallow the meds, take the injections and rest. I’m no better and no worse today – the doctors just want me to get through 5 days of steroids to see if I improve. I’m currently on the loo 10-12 times a day and still losing a lot of blood, it never stops being scary to see blood coming from where you’re not expecting it!!!

Monday is the reassessment day – as far as I know, if I haven’t improved by then Ill be over to the surgical team. If I improve then the plan is to get me better, on to an outpatient drug plan to get well to do the surgery as a planned procedure.

My mum visited this afternoon and then Timm this evening. I asked Timm to bring me the airplane eye mask from home as the lights are never switched off at night and despite sleeping tablets I just can’t get to sleep.

This is what he brought me… You know the nurses and other patients are going to be taking the piss tonight!! Hahaha!!

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Not much else to say I’m afraid apart from a huge continued thank you for all the messages I’m receiving whilst I’m in hospital. It truly means so much and really helps.

Thanks for reading

Sam xxx

Day four in hospital

Day four didn’t start well, I was up late last night and then very early again this morning on the toilet. Not feeling great at all but the one saving grace is that on a gastro ward there is no embarrassment of bum noises as we are all as bad as each other!!

I’m really looking forward to seeing Timm today as he his back from his business trip and is coming to visit, I’ve missed him so much!!! Thank you Caroline for being my ‘stand in Timm’ whilst he’s been away. His jobs for the day also include doing the school uniform shop, school shoes and back to school haircuts for the three kids as I had planned to do it all this week but obviously can’t due to being stuck here! So good luck Timm!!

I’m trying to stay chipper but I have to be honest and say I’m feeling pretty low today. I just don’t understand how I’m being pumped full of drugs but I’m feeling worse than when I arrived. I feel very sad, fed up and anxious today.

I’m writing these blogs through the day so hopefully will be feeling better later in the day once Timm has been.

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This is my stomach, I’m having daily blood thinning injections as I’m at a higher risk of blood clots. The bruises are quite spectacular.

I’m starting to feel frustrated. I totally realise the enormity of the surgery. It’s a life changer for sure, but I’m hoping it will be a positive life changer. I’m so fed up of being ill. I’m gutted that this is making my kids so sad. I just want to be well, a normal person. And if that means living with an ileostomy then I can deal with that.

I just wonder how shit my life has to get before they’ll operate.

I’m sorry that today’s post is a bit of a downer, I suppose it’s just part and parcel of the whole thing. I’m usually good at painting a smile on but today is a struggle.

Timm came to see me today with the kids which both cheered me up when they were here and made me cry when they left. They made me laugh by being thrilled I’m too poorly to eat and so polished off my tea and pudding! I also had a lovely visit from my sister Nicola and lots of messaging back and forth from my sister in Australia.

The steroids are starting to get to me, my chest feels like its pounding and I feel an awful fluttery panic. I’m still not sleeping despite the sleeping tablets and I’m bursting into tears a lot. It’s like I’m getting the side effects without any of the good effects which just doesn’t seem fair!!

My consultant has been to see me and isn’t happy with the lack of progress with the IV steroids. He asked what I would like to do, to wait and see or to move forward in looking at surgery. I said I’d had enough, that after ten years with the disease that surgery was now the right option. He said he was glad I thought that as he thinks its the right way forward for me now.

The plan is now to keep me in for another two days worth of IV steroids. If there’s no improvement by Monday then it’s looking at moving to the other hospital and surgery.

If I improve then they would rather get me well and book the surgery as a planned procedure once I’m off all these drugs in a few months time. So it’s a waiting weekend now.

It’s frightening. I’m frightened. But I just think its the right option for me. I’m on the highest dose of steroids and mesalazine they can give and it’s not making any difference. I know the big boy drugs are just not right for me and so that leaves surgery. I just want my life back. I don’t want to be sick any more, I don’t want my kids to be sad and my husband to have a poorly wife.

I want to live without the fear of pooing myself in public. I want to live without bleeding all the time. I want to be able to plan my future. I want to be a normal person who doesn’t have to take a tons of meds every day.

I want to live.

And if that means living with an ileostomy bag for a while and dealing with a scary surgery (or two!!) then I think I’m ready for that.

I just saw this in a magazine and it struck a chord…

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This is a scary time but I’m going to learn to sail my own ship, and that means going through some storms. With the support of my friends and family I know I can do it.

Love Sam xxx

Day three in hospital

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