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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

Surgery number 5

Like Mambo number 5 but with more general anaesthetic!

So if you follow me on Facebook, twitter and instagram, you may have seen that I have been under the knife again.  I have had two hernias develop since my last op in January and I was on the waiting list to get them fixed by Mr Brown but last week, out of no where, I had a huge, sharp pain in my stomach and my incisional hernia (that runs through my belly button) had popped out and got stuck.

I was sick with the pain and knew immediately that I needed help, I never go to A&E as I hate the waits and the people in the waiting rooms (I know that’s judgemental, sorry!!) But I called Timm from work and asked him to come home and take me to hospital.

incisional hernia with ostomy

I was vomiting with the pain, sweating, crying and a general mess but was seen quite quickly and taken onto a surgical assessment ward where doctors thought I would need surgery as soon as possible.  I stayed in overnight and had a CT scan as they thought that there were loops of bowel stuck through my hernia and were worried they would be damaged.  The scan showed that the hernia was very large and there was fat and tissue stuck through it but luckily no bowel.  I was very relieved as I don’t have that much left, so I can’t risk losing any more!! The other thing it showed though was that my parastomal hernia was worse than imagined and the two were almost joining up with only a centimetre between them, so surgery was the only option.

It was all such a whirlwind, the next thing I knew I was being prepped for surgery, and then I awoke in recovery!  It was a big surgery, almost 5 hours long and a lot more complicated than the doctors had first thought.  They had to open me up and pull in the muscles from the sides, remove the tissue that had been stuck and fix the two hernias with two types of mesh.  One was made from pig skin, so you can officially call me Miss Piggy!

incisional hernia with ostomy surgery

After a few days in hospital, I asked to be discharged home on Monday and have been recovering at home since then.  It has been really painful, a lot more painful than my last hernia op, than in comparison was extremely simple. I feel like a punchbag, I am pretty much bed ridden and really struggling to do much at all.  I am feeling quite emotional and sad about it all, I think it is just the shock of everything happening so quickly, it is taking a bit of time for my head to catch up with the rest of me.

It’s all a bit sudden to be honest and has thrown things up in the air as I am due to start a new job and also because I am about to fly to India in a couple of weeks and so I was in a real panic going to surgery as I had no idea how it would affect these things.  But after talking with Timm, we are on it.  To be honest, it is good timing for the job, I’m not due to start till after my hols and so it means that it is done and dusted before work starts.

Regarding India, it is a bit scary.  If this were just a holiday, I would cancel.  But we are going to our family’s home town where they are honouring my grandfather who passed away this year in a football match and commemoration where we are scattering his ashes.  It is so important to me to attend and so I am fighting through.  Doctors are backing me on this as they understand how much it means and I am under instruction to wear surgical stockings, have daily blood thinning injections and a whole list of other things to keep me healthy.  We are getting a wheelchair to help me whilst we are away and Timm, my mum and the kids are all going to help support me too.

incisional hernia with ostomy surgery staples

So the next couple of weeks is all about rest and healing.  I am doing nothing other than concentrating on my health and getting fit and ready for what I hope is the start of a new chapter in my life.  The past three years have been so difficult, with surgeries, anxiety, illness, fatigue and depression, but now I feel I am turning a new page (ALLLLLL the cliches are coming out now!) and with a surgery to fix all the hernias done, my ileostomy settling in and a new job, I hope life is going to be brighter.

 

Thank you all so much for all your love, support and care

 

You are awesome

 

Sam xx

No Coloniversary

Three years ago today, I was wheeled into theatre and had my colon removed and my first ostomy created. I’d been in hospital for weeks, and this was the end of the line after 10 years of ulcerative colitis.  At the time, I thought it would be the end of all my problems and though I was upset, distraught and terrified, I truly felt that I could start a brand new life without illness.

In the past three years, I’ve had three further surgeries, multiple hospital visits and I’m awaiting a date for my fifth and possibly sixth surgeries!
Don’t get me wrong, I don’t regret what happened. I’d had years of flare ups and illness but I don’t think I really recognised that this was just another chapter in my health story, rather than the end of it.

sam cleasby blogger ostomy ibd disability

There are so many wonderful things that have happened in the past three years, things that would have been difficult, if not impossible with my ulcerative colitis. I travelled to Vietnam and Australia, I renewed my wedding vows and I started this blog!
This place has been such a blessing, it has been my diary, a cathartic release to spew out all my feelings. It’s also let me down a new career path, three years ago I’d have never believed I’d be on TV and radio or that I’d be featured in nearly every major newspaper! I wouldn’t have thought I’d be sitting on the This Morning couch with Holly and Phil, be going to parliament, be writing for a newspaper or be in US People magazine!!

sam cleasby this morning holly willoughby Philip schofield

More than that though, I wouldn’t have believed that id have the strength to help others. To inspire and support people all over the world.  I wouldn’t have thought I’d be meeting wonderful new people who courageously share their stories with me and make me carry on writing.
Three years ago today, as I lay in the high dependency unit, tubes everywhere, I was at my lowest.  I was broken, helpless and my soul hurt.  I felt like my body was a failure, that I had become a burden to everyone around me. I felt as though the world would be better off without me.

sam cleasby blogger ostomy ibd surgery

This blog helped me through the toughest times of my life and I want to thank every single one of you for reading, commenting and supporting me.  I’ve had well over 2.5 MILLION views now, I still can’t believe that number when I say it out loud! And every single reader has a place in my heart.
Thank you for following my journey for the past three years, I hope you’ll continue to be by my side for the next three.

Love Sam xxx

When the struggle feels never ending

I visited my consultant yesterday (yes, on a Saturday because despite the reports, we DO have an NHS on the weekend!) I’ve been having stomach pains, feeling very tired and more worrying, some weird swellings in my stomach.  I knew what he was going to say, but it didn’t make it any less devastating when he told me I have two hernias. 

Fuck. Two?! 

I have a parastomal hernia, which means it sits right behind my stoma and an incisional hernia in my belly button.  I can’t actually explain just how upset I am.  I know some people may think that a hernia is a minor thing, but it affects you every day and limits what you can and can’t do.  But worse than that for me, is that they can only be fixed through surgery.  I just feel my struggle is never fucking ending. 

Just saying the word ‘surgery’ makes me anxious, I feel hot, my palms sweat and my mouth goes dry.  I feel like crying and running away.  The word takes me back to a dark place of hospital wards, pain, suffering and sadness.  I feel panicky and sick. 

Mr Brown saw my face and asked me what I’d like to do, he said surgery is the treatment for this and I just shook my head. “No. I can’t.  I’m not ready in my body or my mind to face surgery again.”  He smiled and agreed, saying he thought I was right and that we should wait as long as possible to operate. 

I asked about alternate ways to help during this time, I already wear support underwear (see Vanilla Blush for support underwear that doesn’t look like your nan bought it) and I try to not over exert my tummy muscles.  I have spoken to my stoma nurse about getting some other hernia support designed for people with an ostomy. 

The other thing is my weight. There’s too much of it. 

I asked Mr Brown if losing weight would help and he said yes.  It will help with the pressure on my stomach and when I do face surgery it will be better for me to be a bit lighter.  I’m a size 16-18, my BMI is 28, I am classed as overweight and plus size. I genuinely like how I look, I don’t diet because I don’t feel that I need to be thinner.  Now I am being told that losing weight would be really beneficial to my health and so it is time to shed a few pounds. 

I know this will be hard, I’ve been overweight since I started having babies but if this will hold off the surgery then it something I must do. 

Regarding the tummy pains and aches, I was told that I’ve had a lot of surgery, there are a lot of internal scars and unfortunately, it is just part of healing. I’ve had a lot taken away inside so I suppose things are moving around and settling which causes pain.  Regarding the tiredness I had bloods taken to test my vit b12 so Ill wait and see what they say about that. 

I’m trying to be positive and look for the ways I can help myself. But really I want to hide in a duvet and cry. I’m absolutely devastated. Have I not been through enough? Does the struggle never end? After each of the 4 surgeries I’ve had in the past 3 years, I think it will be my last, I think that this is the one that makes everything ok, but it never does. 

There’s always something else around the corner and I’m so tired of being unwell and broken.  When does it all end? When will I be ok? 

I don’t know the answer to this question but I do know that I have no other choice but to plod on and keep going.  I’ll recite my Yorkshire mantra that “it’ll be reight” and keep smiling. 

Sam X 

Jpouch removal – an explanation 

I know that these surgical treatments can be super confusing, I have explained to lots of family and friends to help them understand what is happening and so thought I would explain on here too.

Firstly, what is a jpouch?

Well, you can have a good read of my explanation here, but in short, a jpouch (also called an Ileo-Anal Pouch or Ileo-Anal Anastomosis) is an internal pouch formed from the end of the small intestine that is attached inside to complete the gastro tube from mouth to butt.  It is a ‘replacement’ for the large intestine and cannot be seen from the outside.

what is a jpouch

 

what is a j pouch

 

So this is what I had, I have no large intestine (colon) and my small intestine was formed into a pouch that was reattached to my bum.  Jpouches are pretty rare, they are becoming more common though and are sometimes called a ‘reversal’ after having an ostomy.

So the surgery I had in January was to remove my jpouch, unfortunately for me, it wasn’t working.  I had a lot of bouts of pouchitis (inflammation in the pouch) and issues with incontinence.  Some people absolutely love their jpouch and find it gives them a whole new lease of life.  For me, it wasn’t right and so the decision was made to remove it completely.

I had two options with my surgery, I could of opted for a temporary ostomy, where they would divert my small intestine away from the jpouch and out of a temporary loop ileostomy that would come out of my stomach.  This would give my body a rest and allow the jpouch time off.  I then could have a further surgery to reconnect it all again in the hope that the rest would have helped my jpouch and I would have returned to having everything connected internally.

loop ileostomy jpouch

 

 

Or my other option was the one I chose, I chose to have my jpouch removed completely along with my rectum and anus. So now, my digestive system starts at my mouth, goes down to my stomach and then into my small intestine.  They formed a permanent end ileostomy on my stomach and that is the end of my system, I have no large intestine, no rectum and no anus.

This was major surgery and quite a risk but I was at the point where I didn’t want to save my pouch, I was scared that I could have the loop ostomy and rest my pouch and still end up having all the symptoms of pouchitis, I also couldn’t bare the thought of multiple surgeries.

This is a BIG choice to make and anyone facing it should speak to their doctors and get all information and support available to them.  The bigger and permanent surgery was the right choice for me, I can only share my own experience but many other people make different options.

I feel a responsibility to try and share all choices when it comes to surgery and treatment as I know so many people read my blog and I would hate for anyone to not explore their own options.  You should always speak at length with your own doctors, nurses and surgeons.  The internet is a great place for information but it is not always helpful, I love that my little blog can be a tool in your kit to learn more about your illness, but make sure that no one place is your sole info source.

The jpouch didn’t work for me, but I am glad that I gave it a go as I think I would have always been wondering ‘what if’ if I didn’t.  But it does work marvellously for so many!

I hope this has explained a little more about jpouch removal, as always, if you have any questions, hit me up! You can find me on Facebook and Twitter.

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