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Hospital update and feeling anxious and panicky

I saw Mr Brown yesterday and the plan is for yet another surgery, it will be in the new year.

I have two large hernias and they are causing daily, almost constant pain. One is behind my stoma and one is in the old stoma site.

I also have a 6.6cm cyst on my ovary that I’m not sure if it’s causing pain or not as my whole abdomen hurts so who knows what is what.

Mr Brown wants to bring a new surgeon in to work with him, he specialises in complex abdominal problems and due to having so many surgeries, I’m filled with adhesions and scar tissue.

Theyll also be working alongside a gynae surgeon to remove the cyst and possibly my ovary, so it’s all hands on deck!

I just feel sick that this is happening yet again, I’ve really had enough and honestly it doesn’t get any easier, every surgery gets tougher and tougher. Ignorance is bliss when it comes to knowing what recovery is like and I’m so anxious and scared.

Ive used up all my sick pay with having two surgeries this year so any time off work will be unpaid which is super stressful, I know I need time to recover but knowing it will effect our income adds more pressure.

Im writing this at 4am as I can’t sleep for worry. I’m also coming down with some bug as I’m hot and cold and coughing and feel crap but when you have a chronic illness sometimes it feels like you can’t take time off for “normal” illnesses.

I know I’m just having a middle of the night panic but everything just feels very overwhelming right now.

I just want to be well.

Im sick of being in constant pain, it’s so draining. I’m sick of taking painkillers every day though I’m relieved to get some better pain relief today from the GP. But it’s a constant weighing up of being in pain and being able to think straight and taking drugs and feeling dizzy and not with it.

Its the first time since I started working for Scope when I’m actually wondering whether I can cope with it all. I love my job but right now it’s causing me to worry. I worry about how my illness affects my team, I worry about whether I can cope and I worry that if I don’t work, whether we can afford to live the life we do.

Theres not much positivity in this post but as always, it really does help me to be able to blurt all this out here so thanks for reading and I hope that in speaking about the tough times, it helps others to know they’re not alone.

I hope things feel a little brighter when the sun comes up

 

✌🏽& ❤️

Sam x

Healing an old stoma site from the inside out!

Just a word of warning, this post has lots of graphic and medical images of my old stoma site healing and may not be suitable for everyone.

So after the last surgery where they resited my stoma, the old site was left open. I was gobsmacked when I first saw it as I’d never seen an open wound like this before.

They explained that they heal better if they’re not sewn up and they want it to heal from the inside out and so it was packed with dressing and I saw a district nurse every day for just over a month till it healed up.

I had a big cry when I first saw it, it was 3.5cm deep and looked like a gunshot wound, they said it would take around 4-6 weeks to heal and I couldn’t believe that could be true!

So I took photos of the healing process as I found it intriguing and I thought it might help others going through the same situation.

What follows are the images of it healing, as previously warned, they may be upsetting to some so don’t scroll down if you don’t want to look!

 

 

 

 

 

 

 

 

Here we go…

Open stoma wound healing

12th June – 5 days post op

Open stoma wound healing

21st June – 14 days post op

Open stoma wound healing

27th June – 20 days post op

Open stoma wound healing

29th June – 22 days post op

Open stoma wound healing

1st July – 24 days post op

Open stoma wound healing

2nd July – 25 days post op

Open stoma wound healing

5th July – 28 days post op

Open stoma wound healing

11th July – 34 days post op

15th July – 38 days post op

18th July – 41 days post op

Open stoma wound healing

11th August – 65 days post op

So there we go! Isn’t the body brilliant!!!

I hope this helps anyone who is facing this sort of healing process to know that it does get better.

 

Loce Sam xx

Recovery: in pictures

The past few weeks have been tough, recovering from an emergency surgery that knocked me off my feet.  During this time, I have had so little control and I have been unable to do much for myself, which has been so difficult.  But I am so lucky to have my Timm who has been there through it all, he has bathed me, cooked for me, sang to me, sorted my medication and just been my hero.  I’m also lucky to have a budding photographer in my child Eli, who has snapped a few shots during this very rough time.

Enjoy.

recovery surgery partner help to bath

recovery surgery partner help to bath

recovery surgery partner help to bath

dosette box medicine box

TED stockings surgical stockings

TED stockings surgical stockings

cup of tea recovery nurse

timm cleasby

holding hands matching dr who tattoos

sam and timm cleasby

get well soon

holding hands

playing guitar feel better

playing guitar feel better

playing guitar feel better

All images by Eli Cleasby from Timm Cleasby Photography

 

Love Sam xx

The fear

People tell me I’m strong, I’m brave, I’m a fighter. But mainly I just feel afraid.

Being chronically ill takes away all the control in your life, it strips away all the things that make you you and leaves this husk of a being.

The last couple of weeks have been so draining, like the life in me has been sucked away. The surgery was a shock, though it was going to be planned, to have it dropped on me with days notice shook me to the core.

When I got home from hospital I picked up a stomach bug. I felt sick and nauseous and that feeling took over everything. I had stomach cramps that felt like the worst contractions and I was passing water from my stoma, I lost a stone in a week and I honestly felt like I was dying.

But it was the fear that was the worst.

Recovery one day at a time

I felt so afraid, I refused to let Timm call the doctors as I was terrified that they would make me go back in to the hospital and the thought of that was so overwhelming. I couldn’t stop crying, I couldn’t breathe, I had panic attacks and I felt as though I was losing my grip on reality.

Fear is such a strong emotion. A feeling that takes over everything else.

I lost independence and control and had to rely completely on Timm. I was afraid that I’d never feel any better than that again and the thought of that was too much to bear.

This led to the fear that I was too much of a burden. That it would be too much for Timm and he’d walk away. Though he never once did anything to make me feel that way, I think past experience of people I thought loved me walking away planted a seed of doubt that anyone would want to put up with me.

I’m afraid of missing work, I’m afraid of going back to work, I’m afraid that I’m screwing up the kids when they have to see me like this.

Im scared that I’ll never be me again, that I won’t be able to walk the dogs, to work in the allotment, to travel, to be free. I’m afraid that I’m always going to be a patient, a sick person, that I’ll be a constant visitor to hospitals and that my life will be a constant cycle of illness, treatment and recovery.

My nan passed away the day before I was admitted to hospital and so my recovery has coincided with a deep grief and mourning that hits me like a punch to the gut. It’s been a really tough couple of weeks.

I know this is a depressing post, but it feels better to get it out, to give it a voice and to take the power away from this feeling of fear and give me back some control over how I feel.

So though I’m filled with fear right now, I have no other choice but to keep going. I got a card recently and on the front it said ‘take it one day at a time’.  There have been days where even that was too much, I had to take it one hour at a time, fuck, sometimes it was one minute at a time!

And sometimes that it all we can do.

✌🏽& ❤️

Sam

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

Hospital update *spoiler* it’s not good news

I had my 6 week post op check up today with Mr Brown, Timm took the morning off work to come with me as I had a sneaking suspicion that it wasn’t going to be good news.

My stoma and stomach is still very swollen and with exertion it really pops out and my stoma disappears inside my body. I have New deeper convex bags which are really helping with the leaks but it’s still not great.

So Mr Brown said that the op didn’t go as planned as he was thinking it was going to be a really simple incisional hernia repair but when he opened me up, the hernia was originating from the stoma and had spread up to the incision site. He fixed it as much as possible but unfortunately things haven’t solved the issues.

And so I’m going to have to have another operation.

I’m absolutely devastated. I really thought the surgery 6 weeks ago was going to be my final one and now I’m heartbroken at the thought of more.

The options are to have a parastomal hernia repair, this is the easiest op but carries a 50% chance of reoccurrence, or we can totally resite my stoma on the other side, which is a much bigger op but only has a 10% chance of reoccurrence.

I decided I need some time to think about it, we have a big holiday planned for August this year and so I don’t want to do anything before then. So I’m going back to see him in July and we’ll look at scheduling it then. We all think that the stoma resiting, though a scarier op is probably the better option but I’ll give it some real thought and research over the next few months.

Im really tearful now, I just can’t believe I’m going to have to have another surgery. I can’t believe my husband and kids are going to go through it all again. I’m worried about work, taking more time off for yet another surgery, and Timm’s business which is in the first stages of expansion and the effects my illness will have on us.

I know in the grand scheme of life, this is small fry. It’s an operation to fix a problem that isn’t life threatening. I know I’m lucky to have the health that I do have and so don’t want to be too ‘poor me’, but man, I’m gutted.

I had a big cry in the hospital car park and then another big cry in the car. Then an even bigger, snotty wail at home.

It’s not bloody fair! I’ve done my share of hospitals, I want some time off now!!!

Work have been great, I spoke to my manager when I came out of hospital and he’s told me to take the rest of the day off. So I’m going to have a bath, take some meds and get in bed and read a book.

Im going to take today as a mardy day, wallow, eat pancakes, cry and feel sorry for myself.

Then tomorrow I’ll pull on my big girl pants and get on with it…

I read a quote recently, it said:

Life and death quote

And it made me realise you have to make the most of your time here.

Things are pretty shit with my family relations, but I have the best husband, wonderful children and some really loving and supportive family members.

I have THE best friends in the world, so many friends who are bloody brilliant. Especially our Caroline and Jim who are the best friends Timm and I could ever wish for, they’re always there for us and make us so happy.

I have a great job who are understanding and supportive with my illness, Timms business is thriving. I have a lovely home and an allotment which is my happy place.

So if I have to have another op, then I think I’ve got this. Maybe we’re only sent the shit we can handle, and maybe that shit sometimes teaches us we can handle more than we believe.

 

Love 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

India with an ostomy bag

In November last year, I did something ridiculous, like really, really stupid.  I can’t believe I actually did it! Two weeks after having a MASSIVE double hernia operation that cut me from sternum to pelvis, fixing an incisional hernia that had come out and got twisted and stuck and a parastomal hernia that involved completely resiting my stoma, I went traveling to India.

Do not try this at home! I am a big fan of travel and your illness shouldn’t stop you doing the things you want to, but two weeks after major surgery is a bit flipping moronic to be honest!!

The surgery was an emergency, I knew I had the hernias and there was an op to be planned for later in the year, but one day I sat on my bed and all of a sudden my hernia in my middle just fell forward and stuck there and was AGONY.  I could barely breathe, I called my husband and told him to get home from work, I knew something bad had happened.  I got to hospital and was sent straight for scans where they told me that I needed an emergency surgery.

It was scary as hell, but what was playing on my mind was that we had a trip to India booked for two weeks time.  My grandfather passed away last year and as a family we had planned a huge trip to scatter his ashes in my grandmother’s hometown.  He was a goalkeeper as a young man and the local football team had planned a memorial service to him with members of my family playing a game against them!! It was a three week trip that I couldn’t comprehend as I couldn’t even walk, but I knew I had to make it.

And you know what? I am so glad I did.  It was one of the most beautiful and soul warming times of my life, twenty odd family coming together and remembering, singing, laughing, crying.  Being there with my grandmother and my kids was so special, it is something I will never forget.

Was it tough? Oh, hell yes.  My surgeon allowed me to go but I had to give myself blood thinning injections every day for the whole time we were away.  I could barely stand let alone walk and so we got a wheelchair. I was on painkillers and all manner of meds and was high as a kite some of the time.  I was exhausted and there were times when I slept where I fell.  But luckily I had my awesome Timm and the kids right by me, they pushed my chair, they held my hand when I had to inject myself, they let me rest and had fun with me when I was awake, they made it possible and I am so grateful.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog

So the trip itself, we flew to Delhi where we met up with a cousin who looked after us whilst we were there and took us all over this breathtaking city.  We had a day trip to the Taj Mahal (in a wheelchair!) and we explored some amazing sites.  It was hot, dusty, sometimes smelly and quite overwhelming but it was an experience.  As a bolshy feminist woman, I have to say that Delhi isn’t my favourite spot, I found most men either dismissive of me, or aggressively suggestive and I found that really difficult.  It’s the only place I have ever been where I felt that I couldn’t walk down the road on my own, there was a point where I felt so uncomfortable by a group of men surrounding me that I latched on to my cousin’s male friend as though he was my partner.  That doesn’t sit well with me and I hated that I felt so powerless and vulnerable.

india with an ostomy taj mahal in a wheelchair sam cleasby travel blog

From Delhi, we flew to Goa for a week’s relaxation in the sun and it was heavenly! Goa (and India in general) is not wheelchair friendly, accessibility is not a key feature in anywhere we went and if nothing else, it made me appreciate living in a country where at least we are trying!  Goa also gave me chance to wear my awesome cat swimming costume from Vanilla Blush, who make ostomy underwear and swimwear.

vanilla blush ostomy swimwear

It was beautiful and I would love to go back.  In Goa I had an issue with my stoma that got a bit scary, it sank in completely and disappeared into my body meaning that every bag was leaking everywhere, that meant my skin was red raw and bleeding and I couldn’t move as bags were literally slipping straight off me.  In a 24 hour period, I used 12 ostomy bags!!!

I was in a panic, but I texted my stoma nurse who calmed my nerves a little and advised me to take lots of loperamide and ensure I wasn’t getting dehydrated by taking dialyrites.  I felt so shit, here we were in this amazing location and I couldn’t leave the bathroom!

Luckily Timm came to my rescue.  He took the mattress from a single bed and dragged it onto the balcony, he layered it up with bed mats, towels and pillows and made me a day bed where I laid looking out over the most perfect beach and sky, bag off, catching poop in a tissue and getting air to my skin.  It was a moment where I could have felt really sorry for myself, but instead I thought about how my view could have been a hospital bay and if recovery at this point meant laying in front of this vista then life couldn’t be too bad!

india with an ostomy travel chronic illness goa

From Goa we headed to our family home in Mizoram, Aizawl to a fabulous family welcome.  Family had flown in from all over to congregate in this very special place to celebrate a very special man.  From start to finish, it was almost overwhelming in it’s wonder, the football match was emotional beyond belief but watching his ashes hit the pitch where he had played 70 years earlier was astounding.

aizawl football club herbert vaughan match memory Sheffield

The family parties, food, singing, laughing, crying, the sites and sounds, the connection and the wonder was all pretty much the best experience of my life.  Sitting with my cousins in a land so far from our own homes but seeing where our grandmother was born was awe inspiring.  Seeing so many family members coming together to fulfil my grandfather’s dying wish was spectacular.

aizawl football club herbert vaughan match memory Sheffield

Ostomy wise, there was a rather horrific hiccup.  You know the warnings of Delhi Belly? Well, we got Aizawl Arse… I have no idea if it was the food, water, a bug or all of the above but I got the worst belly of my life.  I sat on a toilet with the bottom of my bag open into the loo and watched poo run out of it like it was coming from a tap for about 25 minutes…

It was at this point where I was glad I was a seasoned stoma owner as I think I would have panicked if not.  I knew that if this passed in 24 hours then it was travellers tummy and I would be fine, but I knew that at the rate I was losing output that it would be dehydration that would be the ruin of me, and so I made up 2 litre bottles filled with dialarytes and sipped on the constantly, I was sat on the toilet drinking them, gagging, puking and shitting but I kept going.

sam cleasby ostomy travel blogger india ileostomy ibd

Dehydration is so underrated, especially if you have a stoma, it isn’t about being a bit thirsty, it is about your body shutting down because it doesn’t have enough hydration.  Remember that water is not the best thing in these situations, a rehydration solution is needed, if all else fails, it is sugar and salt in water or even Coca Cola! Just drink, little, often, the whole way through.  It was the worst 24 hours ever, that bathroom was a hellish place but luckily it soon passed and my litres of rehydration did the trick and I was straight back up on my feet!

Timm got it the following day and he said he has never in his life been so ill, he wouldn’t listen to me about drinking and ended up being vaguely ill for weeks.  I honestly think it is because he puked and shat out ever electrolyte in his body!

baskets of chillies india

Travelling with an ostomy so soon after surgery means being hyper aware of your body and your needs.  I knew I needed to listen when I had to rest, I ate well and drank plenty, I made sure I avoided local water and ice and rinsed fruit in bottled water.  I enjoyed myself but also allowed myself time to recover.

sam cleasby mizoram aizawl

My other advice is to be prepared.  This. is. vital.

Ostomy bags – take at least twice as many as you think you will need.  I usually change my bag every 2 or 3 days at home, but planned for once a day for the trip and then doubled it.  If I hadn’t, then the Goa experience of 12 bags in one day would have screwed me completely!!!

Plenty of supplies – dry wipes, any creams, pastes, rings etc that you use. Pack anything you COULD need, so if you occasionally use paste but not often, definitely pack it.

Medication – All your usual medication, in it’s original packaging with either a letter from your doctor or your repeat prescription.

Ostomy Card – I got one of these travel cards from my stoma nurse, it has an explanation of your stoma in several different languages.  We realised that it was in Hindi and so used google translate to print it out in the native language of the country we were visiting.

Lots of waste bags – obviously needed for bag changes, but also good for sticking soiled clothes in till you can get them washed.

Dialaryte (or any other type of rehydration powders) – LOTS of them! They are small and easy to pack in and can be a literal life saver!!!

A readiness to listen to your body and a sense of humour!

mizoram aizawl india

I look back now and I can’t believe we actually managed this, but though it was crazy, I have to say, I am so pleased we did and I am proud of myself.

sam cleasby rovi hmar vaughan

Love 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

 

 

Scars. Body image. And not really dealing with it. 

It’s been a couple of weeks since my last op and slowly, my wounds and scars are healing.  It’s yet another big scar, though it has gone through the scar site of previous surgeries.

Just a warning that there will be some graphic images of my wounds in this post, so if you have problems with that, perhaps click away now.

Part of my scar opened up after having the staples removed and so I’m cleaning it daily and trying to encourage to to heal from the inside out.  This means I have a little hole in my tummy just above my belly button. Inside my belly button is also very slow to heal, so it’s a case of keeping both wounds clean and dry and letting time take its course.

Cleaning the sites is a little tricky as I can’t quite see, so I am doing it in the mirror. I have this magnifying make up mirror on my dressing table and that helps for me to see inside the wounds as I wash them.

Unfortunately it also gives me this close up, well lit, view of my stomach and all it’s many scars, marks and bruises. This morning, it all got a bit much and I got really upset looking at the state of my body.  I have always dealt with my scars quite well, I see them as war wounds and have always been quite proud of them.

Yet after surgery number 5, it is getting harder and harder to see the bright side. My stomach is covered in scars, my ostomy bag and currently lots of little marks and bruises as I’m injecting myself with blood thinners to counteract DVT and blood clots. (I’m not very good at it and keep hitting blood vessels!!)

I have to admit that I’ve sat and had a big cry. I just felt so sorry for myself and I hate that I’m moping but fucking hell, my body is a mess!  I saw myself with fresh eyes today and recognised just how battered my stomach looks.  It made me wonder how Timm could ever find me attractive again?! He’s loving and sweet and I know he’d never say anything unkind to me, but it must be tough for him to see how awful my body looks right now.

I’m sorry this is such a ‘woe is me’ post, I know I’m usually banging on about empowerment and loving your body but right now, I’m finding it tough.

Saying that, I still do respect my body and think I’m a total badass! I love that I’m still standing (well mostly sitting or laying) after everything that’s been thrown at me. I’m in awe that my body is doing such a great job of healing itself after surgery.  I feel tough and strong knowing that I’ve been through a lot and I’m here.


But I think I’m allowed a whinge. I’m allowed to feel shit. I’m allowed to complain and cry. So here it is.

It’s not fucking fair. This isn’t fair, I don’t want this, I’m sick of having operations, I’m so fucking fed up of not being well and ok. I hate looking in the mirror at my scars, these open wounds make me feel queasy.  I am fed up, angry and heartbroken that 3 years after the first surgery that I thought would solve all my problems that I’m still struggling.

I feel hopeless. And that’s the hardest feeling. It’s like I can’t feel optimistic because optimism hasn’t faired me well so far. There’s no point in believing this will be my last surgery as I’ve thought that every time and it got me nowhere but disappointed. So it’s probably easier to assume the worst and then at least I’ll be proved right.


Fuck, I hate that I’ve just written all of that. I read it back and it’s not me. I’m not a pessimist, I should be sticking rhinestones on myself and celebrating the silver linings but right now I just can’t.

I read back at my older posts and wonder what has changed. Why don’t I feel hopeful and optimistic now when I have in the past?  I’m now aware just how annoying it must have been to read my jolly posts whilst you were struggling.  Sorry about that!

People say I’ve inspired them. I find that hard to say because it sounds big headed. But I am proud that in sharing my journey that I have helped people. I just hope people can find comfort in the rough posts too. I’m sorry I can’t be rainbows and kittens for you today, but I hope anyone who is having a tough time can read this and know they aren’t alone.

Sam XX