Posts

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!

20130901-203459.jpg

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

20130901-203601.jpg

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!

20130901-154129.jpg

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…

20130901-181034.jpg

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!!

20130831-215052.jpg

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.

20130830-103628.jpg

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…

20130830-120039.jpg

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!!

20130829-114706.jpg

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.

20130829-202432.jpg

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!

20130829-204259.jpg

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

Day two in hospital

Day two starts Nil by Mouth, not the awesome film with Kathy Burke but with me not eating or drinking. It’s not too much of a hardship as my appetite has bottomed out anyway (no pun intended!) So I’m not eating as they let me know Id be having my colonoscopy today.

20130828-102408.jpg

So after god awful bowel prep I headed down for the camera. I had sedation which is like going sober to pissed in 30 seconds. The camera showed what was expected – active inflammation in my bowel which is open ulcers, bleeding and general soreness.

I had a sleep after and then had a bath as I felt grubby. I managed to pull out my canula whilst in the bath which was fun and meant I needed another put in. I then had more bloods taken – 9 tubes in total this time!! I think I’m secretly feeding all the vampires in Sheffield!

20130828-151100.jpg

My sister and brother in law skyped me from Australia which was fab and really raised my spirits. Andy told me how since I started blogging he is only just realising what my disease means. He expressed his guilt of not knowing more but I just think it means the blog is working! I want to raise awareness, I want people to know more and be able to talk honestly about this shitty disease!

The IBD nurse has been to see me and has had a thorough and honest chat about surgery. She brought me loads of literature and some ileostomy bags to look at. My surgical consultation has been brought forward. It was meant to be next Tuesday but the surgeon is coming to see me tomorrow now. I don’t know what this means on a time scale thing. I suppose it’s a wait and see what he thinks. Whether he thinks surgery is right for me. Ill update tomorrow.

I’m feeling rough today and a bit sorry for myself. I’m trying to keep chipper and I’m posting quite a lot on Facebook. I hope it’s not becoming too annoying!!

20130828-151802.jpg
The view from my hospital ward of Sheffield

I was going through my list of meds with my sister and I think she’s a bit shocked. I’m currently having

4 lots of IV steroids a day
8 tablets of mesalazine
2 mesalazine suppositories
1 prednisolone suppository
2 calcium tablets (to counteract the osteoporosis that can be a side effect of steroids)
1 injection of blood thinner (I’m at a higher risk of blood clots)

I’m also having my blood sugar checked daily to deal with the steroids side effects and have the awful task of a stool chart. Which means every time I have a poo, I have to do it in a pan that I then give to a nurse like a present. They then have the unenviable task of examining, weighing and writing a chart on each poo!! So glamorous!!! At the minute due to me not really eating I’m just passing large amounts of blood which makes the whole task so much more grim!

I’m aware this is probably too much information for some but this is an IBD blog and its important to me to speak honestly.

It’s hard to maintain your dignity when you are pooing in a cardboard box. Or when you are on the receiving end of an enema. Or having a camera put up your arse. And to be honest, I’m finding it difficult to write about. I keep thinking about people reading this and I feel embarrassed and mortified that you’ll know these things. But if I can’t be honest on a blog about Ulcerative Colitis then where can I be?

All I keep thinking is that if this helps one person, then it’s worth the embarrassment.

20130828-153325.jpg
Some great gifts from my IBD Team!

I’m posting this early today as I’m trying to catch up on rest. I’m feeling exhausted and no better yet. I’ve just had a message from the lovely Corinne (AKA Motherscuffer/Motherhood Journeys – google her awesome blog as I can’t figure out how to do links from my iPhone!!!) She is coming to visit me this evening so that’s going to cheer me up no end!!!

I just want to say thank you once again to Caroline and Kay for looking after my kids and to everyone who has sent me messages, texts, emails, phone calls and Skype – every message makes this whole thing a tiny bit easier. It really lifts my spirits so thank you so so much.

As always, please feel free to comment and share my blog with anyone you think it could help.

Much love

Sam xxx

Day one in hospital

Thought I’d blog my hospital journey this time.

This morning I called my consultant to let him know that despite him upping my pred steroids on Thursday that I had got worse over the weekend. He asked me to come into hospital “with a view to being admitted” Obviously I heard this as “come in for a test and then you’ll be able to go home!!

So after a bit of a stress to sort the kids as Timm is working away from Wednesday morning till Thursday night (he’s GOT to go, it’s a super important meeting that could mean great things for us! I told him he had to go!!) Eventually sorted the kids to go to my lovely cousins house for a sleepover tonight so Timm could bring me and get me sorted in hospital and then my wonderful friend is having them whilst he is away. If you lot are reading this, you are awesome and such a huge help xxxx

So I came in, had obs done and then saw the drs – she adviced that I went on IV steroids. This means a 5-7 day stay in hospital. She also added in some other meds to try and stabilise this flare.

A week in hospital is pretty shit but if it can get a hold of the flare and get me settled it will be worth it.

The staff here are amazing. I’m actually shocked at the difference in attitude and care compared to my last hospital. All the nurses, doctors, porters and staff have been so kind, cheerful, compassionate, funny and wonderful. I’m so not used to be treated so well in hospital!! Good work Sheffield Hallamshire!!!

Laying in bed all day gives you time to people watch. It’s brilliant! There’s a lady on my ward that always on her phone. She starts every conversation with “what you had for dinner/tea?”

There’s a staff member who has frankly the most amazing moustache ever, it’s a tash beard bare chin combo going on… I’d love to get a photo and blank his eyes out but I’m fairly certain he could kill me with one batfink karate chop…

20130828-011524.jpg

As nice as all the staff are, it sucks to be in hospital – I miss Timm and the kids. I’m stressing that I was going to buy school uniforms and shoes this week and take them for haircuts!!! Timm is stepping in and doing it all though. Im a tiny bit scared to see what they end up looking like but I’m sure it will be fine!!

20130828-012020.jpg

You get an amazing view across Sheffield from here…

Please feel free to leave comments or questions!

Love Sam xx

20130828-013754.jpg