Post op
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
Oh and dude… I have no belly button any more!!!
Sam xxx
Op update… by Mr C
It’s 11pm and I’m just home after visiting Mrs C in the theatre recovery ward at the northern general.
The op all went to plan and was successful and they had a good look whilst they were in there (The nurses words not mine) and everything looks good, no infection anywhere else.
I can’t begin to explain the relief I felt when I saw her and she opened her eyes and looked ok, she has even managed a smile for a couple of pics (Her choice not the photographer in me forcing her)
They took her from the ward at 2pm this afternoon and at 3.50pm she went into surgery. The op took 2 hours and 20 minutes and now Mrs C has no large intestine, feels weird every time I think about it, that bit of her is gone… but I have to say we are quite happy it has gone because this is the beginning to the end of the disease that has ruled Sam’s life for 10 years.
She’s left with a couple of scars, one large-ish one up her tum and one where her stoma is, I’m sure we’ll have pics to come but for now you have to google if you want to see one.
She is on a patient fed epidural which is an injection into her spine so the pain killers can be administered as she needs them, she was in a little pain when I arrived but the nurses sorted that out quick smart (I have to say on a side note since we moved from Rotherham Hospital the levee; of care has been brilliant, the Staff at both the Hallamshire and the Northern General have been fantastic.
Tonight she will be kept in the High Dependancy Unit (HUD) for observation, there is some level in her blood that is still high (Sorry I don’t have the exact detail) and until that’s calmed down they want to keep a close eye on her.
I’m sure that she’ll be back on it tomorrow so you won’t have to suffer my awful ramblings…
I’ll leave you with a few pics from the recovery ward… oh and a collage that ellie did… (If you’re feeling sad mum just look at the kittens and remember me…) Too cute that girl
Still rollin’ with no colon!!!
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.
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…
In reality it’s more like this…
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!
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!
I feel so blessed to have such awesome friends. Thank you ladies, you have out a smile on my mardy face tonight!
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!
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…
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!!
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