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Surgery number 7!

If you follow me on social media, you’ll know that I had my big op a couple of weeks ago, it’s been a really tough time so I’m only now just well enough to blog about it.

So a bit of background, I had developed a hernia in the incision of my old stoma site and had surgery to operate in March to fix this. After that operation, my surgeon told me it was worse than expected and there was another hernia behind my stoma.

Over the next few weeks, these hernias grew and developed and were extremely painful and getting in the way of day to day life and so the decision was made that I’d need yet another surgery to fix these.

Parastomal hernia

It was decided that I’d try and wait till after August for this op, both to give my body time to recover and also as we are going on an American road trip in August and I wanted to make sure I was well for this.

The pain was getting worse week on week, I had a weeks holiday at the end of May to have some time at home around my birthday and I ended up spending that whole week in bed in agony. My birthday was spent having a bbq with our two best friends in a quiet evening at home where I could lay down and rest. Beautiful but disappointing to feel so poorly.

My beloved nan also took a turn for the worse and so I was trying my best to visit and spend time with her.  On Sunday 3rd June, we went and spent the day with her, she was very tired and on medication but it was lovely to spend time with her and lots of my family.

On Monday 4th, I was in a lot of pain, I could barely stand and my hernia was really stuck out, the decision was made that I needed to get into hospital the following day and have emergency surgery. It was a huge shock and I was frightened about it all.

And then I got the worst phone call. My beautiful, incredible nan had passed away. We rushed straight to her house and spent a few hours with her, holding her, kissing her and just being in her presence. I felt everything crashing away from under me. I can’t say much more at the minute, it’s too raw and painful.

The following morning, Timm took me into hospital and on Thursday 7th I had my surgery.

I had repair of two hernias and resiting of my stoma on the left side. It was quite a long and complex operation as I had a lot of adhesions, mesh and scars to deal with. I believe it took around 5-6hours and honestly has been the toughest one so far.

Perhaps it’s my age or the previous scars etc but either way, this one has floored me.

It was a bit of a shock really to wake up from such a big op, I hadn’t been expecting it and I was still reeling from loss and so my head was all over the place. The first day was a haze of morphine, I had very low blood pressure but I was feeling ok.

The pain team came to see me and explained the plan in place for taking me off the epidural, I told them that I was quite scared as I knew from previous experience what a shock it can be coming off the epidural. I was assured that everything would be in place and I wouldn’t have any pain.

The following morning I was given paracetamol codiene and eventually Oramorph, I’d asked Timm to come in to advocate for me as I knew it was always tough coming off and getting it right. We were told I could have oramorph every hour and that I’d be fine. Happy with this, Timm left to sort the kids out.

The pain started to grow and I saw a nurse who gave me paracetamol, she offered codiene but said I couldn’t have codiene and oramorph together and so I requested the oramorph. She went to get it.

Twenty minutes passed and the pain was blooming through my body, I pressed the buzzer and was told they’d let the nurse know. Another twenty minutes passed and I was in tears, I couldn’t breathe, I was sweating and moaning. I pressed the buzzer and told them I’d take anything just please give me pain relief. Again they went away saying they’d tell a nurse.

Another twenty minutes passed. I was crying hysterically and pressing the buzzer. No one came. Another patient came over and said ‘can I hug you? You’re in so much pain and I can’t believe they’re ignoring you’.

Eventually the nurse came over, she asked what all the fuss was about. I said ‘please just give me the fucking drugs!!’. She was angry and said she didn’t have to be spoken to like that. I begged her ‘please just give me the drugs!’  She angrily jabbed me in the arm leaving a painful red lump and stormed away.

Ten minutes later she returned saying I could have another injection, she was fuming and said I was a disruptive patient. I tried to explain that I was in agony and I’d been promised that I wouldn’t be left in pain. That I was sorry I swore but I was terrified and the pain was too much and I’d been left for an hour. She rolled her eyes at me and was so cold and rude. I said she was being really uncaring and she just rolled her eyes and so I said that my husband was coming in.

Honestly I was in shock, I couldn’t believe that I’d been left in that state. It was less than 48 hours after a huge surgery where I have two big wounds and a new stoma. I was left crying on a ward for an hour whilst they ignored me.

After this, I was laid in bed sobbing. I was in shock, distressed and as the pain relief took effect I was shaking. My arm was red and swollen where she rammed the injection in and I felt so low and just not human.

You all know I love our NHS, I wouldn’t be here without it, it’s amazing. But sometimes people let it down. This nurse was the coldest most uncaring person I’ve ever met. She looked at me like I was shit, she hurt me, she made me feel like I didn’t matter.

We complained and the matron came to see us, she was lovely and listened. She understood and apologised. I apologised for swearing, that i wasn’t like that but the pain was so much. She said it was totally understandable. We will be taking this further.

Thankfully I have a voice, and I have a husband to come and fight my battles with me but there are many who don’t and it’s for them that I must take the complaint further to make sure this doesn’t happen to anyone else.

Sam Cleasby surgery blogger

Once the pain relief was under control, the rest of the stay in hospital was quite normal. Timm came every day, he was my hero. I was struggling as I had no appetite, but the nurses were wonderful and really supportive which was a relief after such a poor start.

My blood results weren’t great though and there was concern about infection but then they dropped to within normal limits and I was let home on Tuesday 12th June.

Sam and Timm Cleasby

As far as we know, the surgery went well. I have a large scar up my middle and the old stoma site has been left open and is being packed every day by the district nurse. It’s a bit of a shock to see a big hole in your tummy though!

This has ended up being a super long post and so I’m going to end it here and I’ll do another post about recovery at home AKA it all goes tits up and Sam thinks she’s going to die… (spoiler, I obviously don’t die)

Adios!

Sam xx

Next surgery date

My next surgery will be next Monday, the 12th March and it’s for the hernia above my stoma from my old stoma site.

Im feeling really nervous for this one, I know it’s not the biggest or longest op I’ve had by far! But I think because I had mentally prepared myself for no more surgeries this one is freaking me out a bit!

I think my main concern is that the hernia is so close to my stoma that it’s a worry that if it’s too close, they may have to resite my stoma which is obviously a much bigger op with a tougher recovery.

The scans we are going off are from last summer and I know the hernia is much much worse than then.  So I suppose I’m just really apprehensive that going into a simple op may mean I wake up with a much harder surgery to recover from.

I’ll be heading in first thing Monday morning and it will either be a 1-2 night stay or a bit longer if the surgery is harder. And then home for a few weeks rest and recovery.

Work have been fantastic and have told me to take as long as I need, they are really supportive and it’s lovely as this is my first op where I’ve had sick pay!! After all my other ops we knew that it would be weeks and weeks of me earning nothing which obviously puts so much more pressure on us as a family and so it’s great to know that the pressure is off and I can actually concentrate on getting better without the voice in my ear telling me to get back to work and earn some cash!

Going into any surgery is scary, and I need to try and calm my nerves and ignore the dread in my stomach that something is going to go wrong.

Its not great timing, Ell starts mock GCSEs on the same day and I’m hoping that they can concentrate on their exams and not worry too much about me. The kids hate me being in hospital and I know they’ll be stressed next week. I hate that I cause them hurt and fear but we’ve talked about it and they’re feeling as ok as they can.

So I will let you know how things go next week!!

Thanks for all the messages of support

 

Sam xx

Iron Infusions

I have finally been signed off from my surgeon!!! Hooray!!! It only took 3 and a half years! Though I am sad to not be seeing the wonderful Mr Brown any more, it is a huge relief to think that unless anything goes wrong, I shouldn’t be having any more surgeries!!!

I am not under the medical team in Sheffield and my consultant is Prof Lobo, who is a legend in the Sheffield IBD scene (SUCH a niche scene!) – I saw him and asked him about this fatigue and if there was anything we could do about it.  He said that fatigue in IBD patients is so tough to deal with as often they will not find one specific reason for the tiredness.

He did my bloods and found me lacking in ferritin and so he prescribed iron tablets, I was to take 200mg of ferrous sulphate three times a day for three months and then we could reassess.  Unfortunately, the tablets didnt suit me at all, they made me so nauseous and sick, I couldnt concentrate as the sickness was so awful. I ended up having time off work because I felt so rubbish.

So I spoke to the specialist IBD nurse and she said that she’d book me in for an iron infusion.  I had to go to hospital and have some bloods taken, then the first infusion took about 25 minutes.  A week later I went back for the second one but that only took 6 minutes.

The put a cannula in your hand or arm and then flush it with saline, then attach a drip bag to a stand and leave you to it.  There is a chance of reactions to the infusion, so you have to stay for around 30 minutes afterwards to check you are ok.  On my second infusion, I came over really faint.  I got really hot and thought I was going to pass out.  Embarrassingly, I had just missed breakfast and was a little light headed, so a cup of tea and a slice of toast and I was back on my feet.

Lots of people have told me that after their infusions, a few days after they have felt the full benefits and been filled with energy and felt a million times better.  Unfortunately for me this hasn’t been the case, I can’t really tell the difference.  I still am exhausted all the time, I finish work and go straight to sleep, Im mainly found hanging out in bed in my pyjamas!

But it is step one on the road to figuring out the fatigue, Im glad we tried it, but ready to look at what else we can do.

 

Sam xx

Dear tea lady,

Dear Tea Lady,

I am so sorry that I don’t know your name, but every time we have met (which has been probably 20 times over the past three and a half years!) I have been dreadfully ill and self indulgent.  I do genuinely feel bad that I can’t remember your name as you have been one of the most important people in my recovery.  But I’m going to blame the drugs.

So dear Tea Lady of the Northern General hospital, I wanted to write a big thank you letter to you.  I have had 4 of my 5 surgeries at your hospital and benefitted from the wonderful care of top surgeons, consultants, anaesthetists, specialists, registrars, doctors, students, nurses and support workers.  All of these people gave me the most brilliant support and health care, I am so lucky to live in the UK and get free at the point of care, world class treatment.

I have had my colon removed, an ostomy created, a jpouch created, a jpouch removed, two hernias fixed, a rectum and anus removed and another ostomy created.  I have also spent weeks and weeks in hospital receiving medication, treatment, blood transfusions and care.

hospital pouch ibd ulcerative colitis

But you know the person who made me feel so much better every day? Yep, it was you!

I saw my consultant for a couple of minutes on their morning rounds, the doctors if something is going wrong, nurses through the day who are so busy and overworked and though I am sure they would like to spend a little more time with patients, they just can’t, I saw support workers, specialists and that huge team for the surgeries themselves.  Yet it was your face that made me smile several times a day.

You make your rounds with your tea cart and after day one, take the time to remember, not only my name, but also how I take my tea! It is a small yet important part of my hospital day, a little feeling of personal care and a reminder of home.

You made me feel special, when you spend a lot of time in hospital, you very quickly become institutionalised, it’s so easy to end up feeling like a number.  But you made me feel like a person, a person who likes their tea strong, yet milky and with one sugar.

I wonder if you know just how important your role is? Do you understand that you become a part of so many people’s recovery story.  You are the person I saw the most, a constant, nurses change from shift to shift, you only see doctors if something is going wrong, yet you are the person I saw several times a day, every day.  Your days off is always a sad one.

And so I want to thank you.

Thank you for all the tea, thank you for the extra biccies on the evenings where you thought I looked like I needed them, thank you for remembering me, thank you for knowing I am a person, not just a patient, thank you for the times you noticed I looked sad and came and touched my hand and made eye contact, thank you for taking your time to speak to me, thank you for the magazines you brought over when I was bed ridden, thank you for telling me about yourself, thank you for the gossip, thank you for being wonderful.

Tea Lady, you are awesome. (And I am really sorry that I can’t remember your name)

Sam xx

What to pack when going into hospital for ostomy surgery

Over on my Facebook page, Natalie got in touch saying she will be going in to hospital for ostomy surgery soon and it got me thinking about what you need to pack when going in to hospital.  I mean, we all know about the usual toiletries etc but I decided to ask my lovely readers what they would recommend to anyone going in for surgery for a colostomy or ileostomy, and man, they took it and ran! I got some amazing replies, over 70 in total and so I thought I would collate them all for a comprehensive list of what to pack when going in to hospital for ostomy surgery.

 

Hospital checklist

Lots of nightwear and underwear, more than you think you’ll need just incase of leaks or spills whilst you’re learning how to change your bags.

Baby wipes – Nicola

Room spray air freshener

Body lotion –  you dehydrate so fast in hospital – Vicky

An eye mask and ear plugs

Take a small pillow to squeeze whenever you need to cough, sneeze or laugh following surgery, it helps hold your stitches together and makes it hurt much less – Jaime

Jelly sweets, boiled sweets, salted crackers, hand cream & diluting juice. I liked having a little snack with me. Couldn’t eat much but found these little things handy, even through the night sometimes! – Jennie

Ear plugs or headphones are a must and slipper socks with rubbery bits on the bottom – Zoe

I took some poo pourri in because I had to measure my stoma output and it made the smell more bearable – Sue

Always salted crisps for me after surgery… my body craves salt at those points! – Nicola

Marshmallows to thicken liquid output before bag changes – Kate

Nightshirts that button up rather than pull over (if you’re having open surgery) – Amy

I took my own pillow and my iPad full of books – Sharyn

Slippers that are easily slipped on and off – bending down isn’t an option for a while. Dry shampoo, baby wipes, books, oversized PJs or nightie (so no pressure on tum) and large, plain cotton, high waisted undies that come up to at least the belly button – supportive and no extra pressure – Emma

A mirror to see stoma in full when bag changing, learning shape and how to clean properly etc – Kate

A nice scented body butter (just not anywhere near the bag seal haha) hair bobbles, baby wipes, dry shampoo, stuff to freshen you up and make you feel nice. And magazines/kindle to keep your mind busy – Katie

Warm socks, my feet always get really cold in hospital  – LT

Shorts and track bottoms and t-shirts as they’re loose and comfortable especially after a nice shower nice warm slippers as hospitals are pretty draughty hence cold floors, basic hygiene stuff shower gel, deodorant etc,and bio oil to treat the scars for improved healing – Kevin

I took one of my lovely feather pillows from home it really helped with sleeping – Vicky

Something that reminds you of home or comfort item such as a blanket, soft toy or photos. Having major surgury is tough, especially ostomy surgury. So having something with you during this tough time to help comfort you between visiting times and through the extremely long days and nights – Robyn

Jelly babies, lots to read, lovely clean big knickers, and lots of nighties. A bag you can keep everything in close by, you can’t move about much at first. Nice smellies, clean flannels – Carol

Lip balm for after surgery, moisturiser for hands and feet, baby wipes, make up wipes, maternity V shape pillow and a big comfy dressing gown along with some headphones to help you zone out the noise from the ward!! – Charlotte

Bed socks as they never tuck in the bottom of the sheets for sensible reasons and your tootsies get cold – Anthea

A picture of my family, warm socks, nail file – Katja

Comfy pjs maybe a size bigger than normal, leaves extra room for any drains etc and easy on a tender tummy. An ipod full of lovely music, tv, films & podcasts. Those little bottles of concentrated squash (the ones where you put a couple of drops in a glass). Your fave jumper or cardigan. Trashy mags with puzzles in. A pen. Wipes. Make up to make you feel better. Photos of loved ones. Any keepsake that makes you smile – Julia

Snacks hospital food is a bit hit and miss – Vicky

Flip flops for the shower! sometimes gastro ward showers can be a bit grim – Joanne

Antibacterial hand wash for changing and emptying your bag if you are confined to your bed at first, mouthwash, a pen – Nicola

Lucozade Sport or Powerade – Shell

I always bring my vitamins, protein and fiber. I know what works for my body. – Amelia

Drinking straws in case you can’t sit up to drink, chap stick, bonjela (I had terrible ulcers from the diet/drugs), if you have a tablet get some music, films and simple games on there, you may not have wifi – Dan

A sense of humour – Nicola

Beanie for bad hair days, good headphones, mint tea – Winny

Pink and white marshmallows & jelly babies are always a must for me when I go in!! Marvellous for ‘firming up’ ya poop, especially ileostomy poop!  – Claire

NO VALUABLES – Sidra

Petroleum jelly! Soft pants and big sanitary towels – Kirsty

Headphones for phone/tablet/tv if you’ll have a roommate. A notebook or preferred memo app for logging medication info, questions, output – Regan

A scarf covered in your favourite perfume – Frankie

I took my straighteners and hair dryer in because the first time I had surgery I looked like the pigeon lady from Home Alone! Plenty of cash, these places aren’t cheap when the shop trolley comes round and you fancy watching some tv. Oh and decent luggage because guaranteed you’ll go home with more stuff than what you went in with! It’s also easier to pack when you get moved wards etc. Heat packs are also good for back pain etc – Donna

An extension cord or portable phone charger for when you can’t reach the plugs – Alice

Face wipes. I wasn’t wearing make up but it felt so refreshing to wash my face – Lee

Lavender hand cream and a little bag of lavender to mask the hospital smell – Liz

Dry shampoo. Phone charger. I couldn’t focus to read but I could scroll through Instagram or Pinterest. Also stretchyand bigger than normal clothes to wear home. There will be bloating and swelling. The last thing you want is anything restrictive. – Lee

Baggy shirts, sweatshirts & PJs, dark colored at first – Susan

If it’s a woman and she is taking birth control pills – she should pack some pads. If she isn’t well enough to take her pill she will get her period after a few days of missed birth control – Brandi

Post Op j pouch ileostomy ibd surgery sheffield sam cleasby so bad ass

Thank you so much to everyone who replied, you can see the whole thread here!

I hope this is helpful to anyone facing surgery any time soon, I know it is scary but all these little things will make it that bit easier and it is so great that they all come from people who have been there and understand what you are going through.

Sam xx

 

 

How to not be a dick patient in hospital

I have spent a lot of time in hospital on the wards, it adds up to months and months of my life and in that time, I have seen a lot.  Mostly good stuff, but some things that set my teeth on edge!  I love our NHS, we are so lucky to have one of the best health care systems in the world that is free at the point of use.  Our NHS is run on nurses, wonderful, brilliant, hard working nurses, as well as a whole plethora of support staff, doctors and surgeons who work together to give us outstanding care.

I know it goes wrong sometimes, I have had the odd bad experience with nurses and doctors and that’s not ok.  But you know what is really bloody wrong? The amount of crap nurses have to put up with from some patients, and so I thought I would give you my guide to avoid being the patient everyone dislikes, how to not be the one who sets the staff’s teeth on edge, how to not be a dick patient in hospital.

dick3

 

Be polite.

It’s a simple one, but oh, so important.  I know you may be in pain, frightened, at your lowest ebb, but manners cost nothing.  Say please and thank you.  People are doing things for you, therefore you should thank them for their time and effort.  Need a bed pan? Don’t demand, ask nicely.  Has a member of support staff just cleaned your shit up? Say thank you!

You aren’t more important than anyone else

Your illness is important to you, but your pain and suffering is no more or less important than anyone else on the ward.  Your needs will be prioritised by someone in the know.  Don’t assume you should get attention above others.  I have seen it a million times when a patient calls your nurse away from you.  Wait your turn!

Be humble

If you are laid in bed and unable to do anything for yourself then no matter how much money is in your bank or how important your job is, you are at the bottom of the food chain, so be humble and grateful to those around you.  That woman mopping the floor is currently lapping you, so thank her.  The man making you a cup of tea is beating you in the ‘being able to get out of bed, go to work and make tea’ status, so smile and be grateful.

hospital drip stand IBD disability

 

Don’t be a dick

I know you may be in pain and feeling terrible, you are probably scared and shaken, but don’t be a dick about it.  The staff know it is hard being a patient and want to do everything to make you comfortable, they don’t deserve to be shouted at, mocked or abused.  I have heard patients loudly comment about nurse and support staff’s weight, appearance and sexuality.  Not cool.  Not cool at all.

Speak up, don’t scream out

If you are struggling, speak up.  But don’t scream out.  It can be frustrating and anger inducing to be in hospital, but don’t lay this at the feet of the people caring for you.  They are at work and doing their job, they are human and don’t deserve to be a verbal punching bag for you.

ibd hospital jpouch canula medications

Be respectful

Respect is a two way street, I have seen patients scream at nurses, call them names and then whinge that they aren’t liked and everyone ignores them.  The people caring for you are doing a tough job, give them credit for caring for you for little more than the living wage.

Think of your fellow patients

You may be at your lowest point, but it’s likely that so are the other 7 people on your ward, so think of them too.  Keep the noise down, smile at them, don’t be nosy about their private medical needs.  “So, what you had done?” is never really an ok question in my books.  If people want to talk about themselves they will, don’t pry.

sam cleasby ulcerative colitis ibd ileostomy surgery

If it’s good, say so…

If you are receiving great care, then say so, thank the person, tell them how much of a difference they are making to you.  If you feel a certain person has made your life so much easier, then let them know.  My nursing friends tell me that even in their worst nightmares of shifts, the praise and gratitude of one patient can make it all better.

 

So much is put on the behaviour and attitude of NHS staff, and rightly so.  They should have to behave in a way that is respectful, caring and professional, but us patients have our role too and we need to think of others even in our own greatest time of need.

 

Sam x

It’s been a while… The bag is back

Hey guys, it’s been a while hasn’t it, but I thought it time to update on the big operation!

So I got a call on 5th January saying there had been a cancellation and asking if I could come in for surgery on the 6th. It was a big shock, but I agreed and headed in for 7am to the Northern General in Sheffield for my Jpouch removal and permenant ileostomy surgery.

I checked into the pre op ward, saw my surgeon and anaesthetist and was taken down to surgery at around 9am. I was having an epidural inserted for post op pain relief and unfortunately, it took a while, 7 attempts in total!  The anaesthetist was great, very friendly and warm, he chatted and apologised for the complications. He’d actually been my anaesthetist for the last big surgery and we’d had no issues previously.  I’d had plenty of local anaesthetic though so it was not painful at all. These things just happen sometimes!

So once that was in, I laid back and they began putting me under, I literally don’t remember a single thing! No counting down, just bang and out.

I awoke several hours later in recovery, I had zero pain and was just very, very tired. I ended up staying in recovery for a good few hours as my blood pressure was at 80/50 and there were concerns that it was too low. The nurses were lovely, I was just really dozy and sleepy and so I’m sure it was more worrying for others than me as I was snoozing!

I was taken up onto the ward and Timm was there waiting for me, I was totally out of it but pain free and happy. I don’t really remember much of his visit apart from being happy he was there. Apparently he took photos though!



The first couple of days went on a blur, I had an epidural for pain relief plus IV paracetamol, antibiotics and fluids to bring up my blood pressure.  I was a mass of tubes with three IVs in two canulas, oxygen into my nose, a catheter, a drain from my stomach and the epidural tube.  I had two big dressings on my tummy and my brand new Stoma. To be honest, it was all a bit much to take in.


Whilst I had the epidural in, I had no pain at all. But on day 3, the epidural came out and things all got a bit trickier. It was very painful but I had all manner of oral pain meds and it started to get under control. Mr Brown came to see me and said the op had been a success, that it had taken a long time and had been complex but he’d expected that. He was happy with the outcome and now I just need to recover from the op.

So what did they do?

My Jpouch, which was a bag formed from my small intestine and connected to my rectum, was removed completely.  They then took out my rectum and sewed up my anus. I’m now the proud owner of a Barbie Butt! I have no bum hole!!!

He then formed an end ileostomy, this Stoma is on my right side and is permenant.  So now I have my bag for life. The recovery has been hard going, I came home after 5 days and have been recouping in my own bed, which is so much better than being in hospital.

I have a few wounds to be dealing with so its quite tough. I have the wound in my bottom which feels like I’ve been kicked in the undercarriage (high five for using the word undercarriage), my wound in my stomach is 17cm long and goes from the top of my belly button straight down into my groin.  This is painful and when I stand, it feels like everything is going to fall out!  The top inch has opened up and so it’s being packed and dressed by the district nurse twice a week.  Then there is a 1.5 cm wound in my stomach where the drain was, this needs to heal from the inside out and so is open and slowly drying out.

Then there’s the new Stoma.

I am struggling. Mentally and physically.

Physically, I know what I’m doing and how to change bags and so that part is ok, but the stoma has come away from the skin on one side and has left a big hole into my abdomen. This is painful and makes it hard for the bags to stick.  The Stoma nurse says it happens sometimes, not to worry about it and that it needs to heal on its own. I can’t help but be concerned that it’s getting poo in it and will get infected but she says it will be fine.

This, in turn, has made my skin around the Stoma very raw, like an open sore. It hurts a lot and makes bags not stick so I then leak.  The leaks are soul destroying.  There’s nothing more dismaying than being covered in your own shit. It makes me cry and feel desolate.

I had a massive leak and couldn’t deal with it alone, I needed help to get my clothes off, I had to shower and I needed Timm’s help, though I didn’t want it. I cried as he sat me down and peeled off my soiled clothes, begging him to leave me to it, even though I know I needed the support. He was calm and loving and wiped away my tears, telling me everything would be OK.

I’m kind of surprised by my struggle. I thought that because I’ve had a Stoma before, that I’d be fine with it.  I’m not.

I don’t feel ready.  I change my bag but I hate seeing it, looking at it, touching it.  I wish I could ignore it completely.  I know this isn’t my usual happy and positive stance but it’s important that I’m honest.  And honestly, I feel sad, angry and frustrated.

It’s the knowledge that this is forever that hurts. That now there’s no going back and that till the day I die, I’ll have this bag.  I want to scream that it’s not fucking fair. I’m angry that this is the hand I was dealt, pissed off that I can’t have a normal, healthy body.

It’s early days though. I’ll learn to accept this and adapt to my new life.  You know why? Because I don’t have a choice. I don’t want to feel this sad forever and so I’m going to have to learn how to be happy with this change.

After a week at home recovering, we got some news that has shook everything. My grandpa passed away this week. It was unexpected and is a huge blow to us all.  I visited my mum, nannan and family, though it was physically tough, I was in a lot of pain and had a terrible leak on the way home but I’m glad I did as it felt right to be in their home and surrounded by family.

grandfather and granddaughter

So I am home and recovering.  I am an impatient patient, I just want to be back up on my feet and doing everything, but I know that I need to listen to my body, rest and heal.  It is so good to be back in my own bed rather than hospital, I have had so many lovely visits from friends and family.  Timm and the kids have been brilliant, and whilst Timm was at work last week, my awesome friend Caroline came over and looked after me for two days and then my mum came for four days.  They’ve cooked, cleaned, looked after the kids, cared for me and just been fantastic.  I couldn’t thank them more, they are both brilliant.

You don’t know just how lucky you are to have friends and family till you are broken and in need, we have both been blown away by the love that has been showered on us all as a family since the op.  We had three friends come over to the house when I was due out of hospital and cleaned up for us, changing bed sheets, hoovering and leaving my bedroom welcoming with flowers and candles.  We’ve had meals delivered to us, movies sent, chocolates, cards and flowers as well as people just coming to visit and sit with me.  Honestly, I am humbled, thank you to every one of you.

I have also had so many emails, messages, texts and phone calls from friends, family and readers of this blog, thank you so much, it means so much.

And so now I am just at the stage of resting, recovering, nurse visits and healing.  I still have quite a bit of pain and I’m on painkillers but it’s not so bad, I am still sleeping a lot and being upright and walking is hard work, I am sitting on donut cushions and have a million pillows in my bed to prop me up and surround me in order to get comfortable.  It is flustrating (my new word garnered from watching two whole series of Hell’s Kitchen, a mix between flustered and frustrated!) to be unable to just get up and do all the things I want to.  We are due to move house and so I really need to be packing, but I am instead pointing and things and asking others to pack for me.

But I will get there, I am sorry for my lack of blogging, this surgery was so big and scary and the recovery so tough, that I needed a little time off.  During the last operations and recovery, blogging had felt like therapy for me, this time I needed a bit more head space, but I am now back and will be writing about my recovery and life as So Bad Ass with a vengeance!

 

Sam xxx

Guess what? It’s time!

I just had a call from the hospital and they’ve had a cancellation! I’m going in tomorrow morning for my op!  I am having my jpouch removed, my butt sewn up and a permanent ileostomy formed.

I am a bit in shock, it is all very real now.  I mean, I knew it was coming but this is it, the final day of my life without an ostomy.

woman with scars on stomach ibd blogger sam cleasby

I’m scared, upset and bewildered but life at the minute is crap, I am so ill, I go to the toilet 20 times a day and have accidents, so it has got to be better than this!

I will ask Timm to update when he can, if you don’t already, you can follow me on Facebook and twitter where I am more likely to be (though the internet/phone connection in the hospital is shit!)

It’s a big operation and recovery takes a while, but I will try and blog whenever I can.  I just hope this is the start of a new, happier and healthier life for me.  I’m a bit in shock and need to go pack my bags and get myself ready, so I’d better get off now as I think I am waffling.

I’ll see you all on the other side, yo.

 

Sam xxxx

Funny things overheard in hospital

During my last stay in hospital, I heard some brilliantly weird lines and jotted them down on my phone… I just found them and thought I would share.

You hear some great things on the ward…

“Did you know that they mummified Princess Diana? Mummified or embalmed. Are they different?”

“Elvis is alive! They just found him dead in America!”

“I think I just turned the TV off with my mind.”

“Some people drink piss you know! I couldn’t stand the smell, but I think it would taste ok”

“Sorry love, but you’re down wind from me and it’s going to get breezy”

“I think they’ve bled me dry, but if that handsome young doctor is doing the blood rounds, he can take some more! It’s been a while since I had a young man on his knees in front of me!”

“I don’t know whether this pie is sweet or savoury”

 

Being in hospital is tough, but you meet some of the most interesting people.  And many of those people are on medication.  It’s comedy gold!

Please share some of the funny stuff you have heard in your time on the wards!

 

Sam x