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

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.


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…


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!!


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.


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!


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.


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!


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!!

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.

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…


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!!


You get an amazing view across Sheffield from here…

Please feel free to leave comments or questions!

Love Sam xx


How Im feeling today

Firstly thank you so much for the wonderful response to my last blog post about Why Im Choosing to Have my Bowel Removed. I had so many messages and emails of support and so many from people facing their own battles. Every message is so greatly appreciated.

Today Im writing about feelings. About how I feel dealing with Ulcerative Colitis and how it affects me mentally and emotionally.

On Thursday my consultant upped my steroids again, I had tapered down but started flaring again. The meds don’t seem to be working. Im feeling worse and worse each day… Im waiting till 2pm so I can call my specialist nurse for advise on what to do next.

So here’s what Im feeling today…

ulcerative colitis feelings

Fear – Im afraid of what is going to happen to me – afraid of the medications, the thought of surgery. Im fearful that people will get fed up of me always being ill.

Sadness – Man, I feel so sad right now. It’s a sadness so deep it feels like a punch to the gut. Im VERY good at pasting a smile on my face and being the silly, happy joker but this sadness is creeping right through even my fakest of smiles.

Frustration – Im frustrated with my body, I wish I had a magic wand that would just make me not be sick…

Envy – I suppose this leads on from frustration. I envy people who are well and just wish I could have a normal body.

Anger – Im angry that this is the hand I have been dealt – I want to shout like a toddler ITS NOT BLOODY FAIR!

Anxiety – My anxiety levels are sky high, I lay in bed at night worrying about EVERYTHING.

Confusion – With all these other feelings going on it is probably not unusual that Im confused. At times I feel like I just want them to operate. Today. Then other times Im terrified and wonder if there are any other options. Should I be looking at a raw juice diet? What if I were more spiritual and started meditating and doing yoga every day? Perhaps if I could just lose weight it would be better? Or maybe it’s because I am stressed? Logically I know that I have a disease and this disease needs treating with medication, I didn’t do anything wrong to get this but at times I can’t help but blame myself.

Guilt – This is my biggy. I feel so guilty. All the time. I feel guilty that Im not the mother I should be because Im ill in bed. I feel guilty that my kids worry about my health. I feel guilty that the steroids make me have flashes of anger and I tell the kids off when they probably don’t deserve it. I feel guilty that my husband doesn’t have a ‘normal’ wife. I feel guilty that my friends and family have to help me out with childcare. I feel guilty that Im not pulling my weight with the business because Im laid in bed. I feel guilty that my husband has to take on both our roles. I feel guilty that I ruin days out because I need to be somewhere near a loo and then spend most of the day in the bathroom. I feel guilty that we can’t plan to do things because we don’t know how well I’ll be. I could go on forever… Guilt is a shit feeling.

Love – I thought Id end on a nice feeling. My husband is fab, he deals with my illness so well. He doesn’t pander to it, or treat me like a sick person. He takes the piss out of me. He makes me laugh. He sits with me when the insomnia kicks in and listens to my random questions about giraffes at 2am. He sends me to bed when he sees I am struggling. He takes on the roles that would usually be mine without complaint. He pinches my bum and tells me Im beautiful even when we both know I look like shit. He sits in bed with me and we play dice for hours. He tells me everything will be ok. He comes to my appointments and makes sure my voice is heard. He say ridiculously inappropriate things and makes me howl with laughter. He makes me feel better. He loves me.

Thanks for reading xxx

Why I am choosing to have my bowel removed

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!