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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.

Phantom Rectum

Phantom Rectum.  No, this isn’t a really great band name or a ghostly arsehole, but an actual thing that people without a butt sometimes have to deal with.  Let me explain…

You know you hear about people who have had a limb amputated who have a feeling in said limb?  It could be pain, itching or tingling.  This could be due to damage to nerve endings or it could be activity within the brain as it struggles to deal with the fact that limb is no longer there.  This phantom limb pain is very, very hard to treat.

So back to phantom rectum…

People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

sam cleasby so bad ass phantom rectum

Some people also experience tingling, pressure, stinging, burning, pain, itching or aching.  Despite the comedic name, it can actually be really miserable and affect self esteem, confidence and mental health in some people.

Sometimes phantom rectum syndrome is found in patients who still have a rectum, but  don’t have it ‘connected’ as they have had ostomy surgery or other operations to divert stool away from it.  They may experience phantom rectum because of a build up of mucus in the rectum.  But it is also experienced by those who have had the rectum and anus removed completely, this could be because of scar tissue, nerve damage or a psychological effect.

I am only a few weeks out of surgery but I definitely get the old phantom rectum symptoms, I really do think mine is my brain telling my body to do something it can’t.  For example, after a morning cup of coffee when you get ‘that’ urge, I still get that, but there is nothing down there! I can only poo through my stoma, I have no rectum or anus yet I get a real and true physical feeling that I need to pass stool through my butt. It is a very odd sensation though I am getting used to it.  I do still have some pain there, but I think this is because I am still recovering and healing.

sam cleasby parenting blogger fathers self esteem

So what can you do?

If this is a problem for you, firstly, speak to your specialised nurse, GP or doctor to rule out any other issues.  Self care involves sitting on the toilet, relaxation techniques, soothing skin with creams.  Doctors may be able to prescribe medication or other therapies.  Unfortunately, like Phantom Limb pain, it can be very difficult to treat.

For many people it is inconvenient and a bit annoying rather than life altering and I think I am lucky to be in that gang.  Symptoms tend to resolve spontaneously in 50% of cases. Phantom rectum is relatively common but symptoms are usually mild and resolve in time.  I refuse to be embarrassed by this though, and thought a blog post was in order to get people talking about their ghostly butt.

And for the record, I bagsy the name So Bad Ass and the Phantom Rectums for my band name!

 

How we look and how we feel

Before 2013, I didn’t have the best body confidence.  I was a size 16 with stretch marks and wobbly bits, I had carried, birthed and fed three big babies (9lb9oz, 8lb1oz, 11lb) with one c-section to boot.  Before I had kids, I was a size 8, after my first I was a size 16 and that weight never really shifted.

I was constantly dieting, I would lose weight but then gain it all back again plus a little more.  I hated my body, I thought it was flabby and ugly, it wibbled and wobbled and definitely didn’t look like the women in magazines.  After years of this, it started to piss me off and I sort to find better role models, I stopped buying crappy women’s weekly mags whose aim in life is to point out the flaws of women, I started to think about the qualities that were important in life, rather than the physical appearance of a person.

But it was hard, and mainly I just felt a bit sad and disappointed in my body.  I have been a size 16 for 15 years now and I have learnt that society views me as fat.   I can’t always buy clothes I want as shops either don’t go up to a 16 or they don’t have them in stock.  I know that on the BMI scale I am in the upper part of overweight and when I go out in town, I see people judging me.  But I carried on, with the ever changing diet and dreams of skinniness.

And then in September 2013, I got so ill with Ulcerative Colitis that I had to have surgery to remove my colon and give me an ileostomy bag and everything changed. All of a sudden my focus wasn’t on the number in the back of my dress, or the size of my backside, it was on survival and recovery, of getting over the surgery and learning to live with a bag of poo on my tummy.  All of a sudden, all those worries over calories and cellulite, fat bits and wobbly arses seemed silly.

I have been looking back at photographs of myself and I realise that the things I look at aren’t how big my thighs are, or my stretch marks but that I am healthy and happy.  Even though these images were taken during the 10 years I had with Ulcerative Colitis, they were also during remission periods.  I look at these now compared to my scarred and stoma’d stomach now and wish I had appreciated my body a little more!

sam cleasby body positive plus size ostomy

sam cleasby body positive plus size ostomy

 

The next photos were taken whilst I had my first ostomy, it had been a huge shock to me but I was happy to be feeling well.  I went travelling three months after surgery to Vietnam and Australia, it was hard work but it was so important to me to take control of my life and not let my stoma stop me.

During this time in my life I just felt so happy to be alive! I started to love my body, I celebrated that my body had survived the surgery and began to love myself.  I stopped giving a shit about my cellulite and I wasn’t concerned about my stretch marks, I was just grateful to have a body that worked.

sam cleasby body positive plus size ostomy

sam cleasby body positive plus size ostomy

 

The next shots are from after my reversal, I no longer had my ileostomy and had my jpouch, but the jpouch wasn’t working so well.  I started to feel panic about my body failing me again.  Thinking about my body physically stopped being about the parts society tells me are wrong, my weight, my scars, it was about my health.  My concern was that my pouch wasn’t working, that I was having accidents and that I was going to have to have more surgery.

Honestly, it was a sad time and I think you can see that in these photos.  I had accepted my body for it’s physical appearance but my health worries were a very difficult and heartbreaking time.  I regretted my decision to have the jpouch and I was sick and tired of being sick and tired.

sam cleasby body positive plus size ostomy jpouch

nude beach stone balancing so bad ass sam cleasby

 

And we come to now… I am 6 weeks post op and I now have a permanent ileostomy, I have a bag for life!  How do I feel now? To be honest, I think it is just too early to say, I am relieved to not have pouchitis any more, I am happy that I don’t shit myself, but the bag is something I still need to get used to.

ileostomy bag stoma ostomy permanent ostomy after jpouch removal

I am being careful not to put my stress and unhappiness onto my stoma.

The past few months have been the hardest of my whole life, I had rejection over my book, I am moving house and have had 6 months of stress regarding this move, my grandfather passed away in January, I am feeling insecure in my writing and work and then I had major surgery!!!

I have so much on right now and life is very overwhelming, I take on so much and I think I need to step back from some things that aren’t vital.  I am a parent governor, I run the South Yorkshire Crohns and Colitis group, I work for lots of different people as a freelance writer and life is hectic.  My family is going through everything I am and my kids are stressed out, I am a swan, I am calm on the surface but paddling like fuck under the water.

So with all of this going on, I don’t want to put my emotional state solely on my stoma.  I am struggling, I feel anxious, overwhelmed and ever so sad, but with so much going on, I think I need to give myself a break.

What I refuse to do now though is to berate my body, to feel bad about it. I refuse to diet, I refuse to conform to how society wants me to look.  Everything I do regarding my body is going to be what I want, fuck everyone else.  This is MY body and it has gone through a lot, I am going to celebrate the fact that despite 4 surgeries in 3 years, I am still standing.

So #effyourbeautystandards and rejoice that we are here, we are unique, we are beautiful.  And I don’t need to be a white, size 6, able bodied 20 year old to be fucking awesome.

sam cleasby body positive plus size ostomy ileostomy colostomy

 

Clothes and Ostomies

One of the most common questions I get sent to me is about what clothes to wear when you have an ostomy.  People asking if they can ever wear ‘normal’ clothes again, how to hide your bag, what underwear is best and how to still feel like themselves.

My answer is usually that you can wear anything you like! There are no hard and fast rules, it is about personal preference, some people don’t mind if you can see the bag, others want to mask it.  I think the only thing that affects my clothes choices is comfort.  I want to wear things that I am comfortable in and feel amazing.  Amazing for me feels like wearing something that I love, that also fits well around my stoma and means I can go about my day without paying too much attention to my ostomy bag.

Now I am a permanent ostomate and will have this bag forever, it has meant a reshuffle of my wardrobe and some new clothes.  I started by going through all my current clothes and chucking out EVERYTHING that doesn’t fit well around my stoma, this was pretty depressing and I have to admit, I had a little cry.

It all felt so FINAL to give away my favourite trousers.  But those fave trews have a waistband that sit directly on top of my stoma, I tried wiggling them lower or pulling them over the top but neither worked.  I had to accept that my stoma ain’t moving so what is the point in keeping the trousers?

Then I went shopping! YEY!  Last time I had a stoma, I found that maternity trousers are awesome for life with an ostomy, especially those that have the stretchy panel attached to them and so I hit H&M and bought two pairs of maternity jeans and a pair of maternity leggings.  I also find that a slightly longer than usual top makes me feel tons more comfortable and so searched for tops that made me happy.

So this was my going shopping outfit.  A long stripy skirt, the waistband sits above my stoma and a longer black top with a scarf.  It’s super comfy without being too casual and if you’re concerned about showing the bulge, the scarf hides everything.

Top – George at Asda

Skirt and scarf – Primark

clothes and ostomy ileostomy colostomy fashion clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

 

Onto my bought items, this is maternity jeans and a tight fitting top that is just a bit longer than usual.  I don’t mind if the outline of my bag shows and I am happy to wear tight fitting clothes.  I know some people are more self conscious but I find that no one cares! And if anyone notices, I am happy to tell them about my bag.

You can see the panel and wear it sits with regard to my ileostomy bag.  I love that it keeps everything tucked against my body and it feels safe.  You can also see it from the side.

MAMA super skinny jeans – H&M £24.99

Conscious Long Sleeve Jersey top – H&M £7.99

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

 

I also went in for some maternity black leggings.  Leggings are great for going under anything and these make me feel the bag is kept tucked against my body so when I wear a dress or top over, it’s not flapping about!

MAMA Leggings H&M £7.99

ostomy and fashion

 

Outfit three was more maternity jeans, black this time and a loose fitting shirt.  I love this outfit as I just feel like myself in it, I can see myself wearing it around the house or going out with the kids.  It’s so comfortable too, I hate wearing joggers, I feel like Waynetta Slob in them and so a comfy, relaxed outfit that I feel like ‘me’ in is just brill.  Again, it’s easy to shove a scarf over for those times when your bag fills up instantly and you look like you’re smuggling a bag of potatoes…

MAMA jeans H&M – £24.99

Cotton Shirt H&M – £14.99

Scarf Primark – £3

clothes and ostomy ileostomy colostomy fashion

clothes and ostomy ileostomy colostomy fashion

This next outfit made me smile, it is a dress I bought pre surgery and I wondered how it would fit me now.  I teamed it with my new black maternity jeans and pumps and I felt like me again!

Dress M&S (About) £30

clothes and ostomy ileostomy colostomy fashion

 

So there we go, my first post ostomy shopping trip.  It may just seem like a couple of pairs of jeans but to me it was the start of getting back to feeling like myself.  I have spent weeks recovering in pyjamas and to now be back in ‘human’ clothes feels amazing.

I really enjoyed sharing my clothes ideas and after receiving a few emails recently from women who feel they can’t wear what they want I think I may share some other fashion posts again.  I am a size 16, 34 year old woman, I know I am no clothes horse but I love fashion and I want other people with an ostomy to know that no matter your condition, your size or your age, you can wear whatever the f**k you want.  Fashion is about fun and expression, the only person it matters to whether your clothes look good is you.

Your style and fashion with an ostomy may have to adapt, you might have to think twice about where that waistband sits, but it is not the end of the world and you can still look and feel like yourself again.  You may want to flaunt your bag, hide it or care neither way, but there is a style of clothes that will fit you and make you feel awesome again. You just need to look for it.

 

Sam xx

Stoma skin problems – WARNING Graphic images 

I have had some issues with my Stoma post surgery. The stitches came away from the skin leaving me with a large hole into my stomach.

It was bloody awful to look at, it was really nasty and made me queasy. I documented the healing process though as in the beginning I couldn’t imagine it getting any better.

Be warned that the images in this post are really quite graphic.  If you don’t like images of open wounds and stomas, I really wouldn’t bother with the rest of this post!

The reason for this post is not to shock but to teach and comfort anyone who has had this happen to them, when it first happened to me, I panicked and was really upset and terrified.  I could see into my body!! I spoke to my stoma nurse (and I 100% recommend that you speak to a medical professional if you are having any issues!!!) and she told me that it wasn’t that rare, that I needn’t be too concerned and that with treatment, it would soon be sorted.

I used a paste to fill in the hole, it was the Convatec Stomahesive paste that does really sting for the first few seconds when you apply it, but it does the job.  It fills the hole so poo can’t get in and then heals it from the inside out.

Apart from the obvious need to heal the hole, what is important is that when you have a would like this, it stops your bags from sticking properly and when you don’t have a well fitting bag, you get extremely sore, wet skin which in turn, further stops your bag from fitting… It is a vicious circle that is miserable as if you don’t have a well fitting bag, you get leaks and leaks stop you from living a normal life.

I feel I have given enough warnings now, the photographs below could be upsetting if you don’t like seeing inside a body!! So scroll down if you want to see the healing process and I really hope it helps.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

*FINAL WARNING*

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

stoma problems my stoma has come away from the skin

Day 1 – 15th January –  the stoma has come away from the skin.  You can see the stitches still surrounding my skin.
stoma problems my stoma has come away from the skin

Day 3 – 17th January – you can see it has got worse here, this is before any treatment.  You can see right inside here!

 

 

stoma problems my stoma has come away from the skin

Day 5 – 19th January – I had been using the Convatec Powder but it wasn’t really helping.

 

 

stoma problems my stoma has come away from the skin

Day 7 – 20th January – it was really bad here, though the wound is starting to heal from the inside, you can see how my bags haven’t been sealing properly and therefore the skin around my stoma is blistering and burning.  This is from my very acidic poo getting on my skin and burning away at it.

 

 

stoma problems my stoma has come away from the skin

Day 8 – 21st January – still really bad! Those open burns and blisters are extremely painful.  I saw my stoma nurse on this day and she wasn’t happy with the powder treatment and started me on the paste.
stoma problems my stoma has come away from the skin

Day 11 – 24th January- after just three days using the paste, you can see the VAST improvement.  The wound is healing and you can see that my skin is healing too.  The paste goes around the stoma and fills in the hole, it means no poo can get on my skin.  You can also see that the last of my stitches have dissolved or come out.

 

 

stoma problems my stoma has come away from the skin

Day 14 – 27th January – my skin is almost completely healed after 6 days using the paste and you can see that the wound is almost completely closed.

 

 

stoma problems my stoma has come away from the skin

Day 21 – 3rd Feb – after another week using the paste, my skin is healed and the wound is well on it’s way to being filled and healed!

 

 

stoma problems my stoma has come away from the skin
Day 23 – 5th Feb – another two days and it is pretty much there!

 

 

stoma problems my stoma has come away from the skin

Day 29 – 11th Feb – the wound is completely healed though my skin is still slightly discoloured.  You can see how well healed the rest of my skin is as my bag is fitting perfectly and so I am having no seepage or leaks.

 

*********************************

So there we go, that was my process from wound opening to healing.  As I said, I have shared these photos and this post to help anyone going through skin problems and so I hope this has been of use.  It can be extremely scary when things go wrong and I think it is good to see other people’s experiences so you can see there is light at the end of the tunnel.

Don’t forget that your stoma nurse is the best port of call for any stoma issues, they have seen it all before and will have treatments and solutions.  My first treatment didn’t work for me but the second was brilliant, my stoma nurse told me there were more things to try if it didn’t work though.

I hope my openness helps everyone with a stoma to not worry, not be embarrassed and to speak out and get help if you have any issues.  And for all you who just wanted a gawk, I hope you enjoyed it!!!

 

Sam xx

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

Comparison is the thief of joy 

I read this quote saying ‘comparison is the thief of joy’ and it felt very apt this week as I have fallen into the trap of comparing myself to others.  And my joy feels completely stolen.

Having a chronic illness and facing surgery soon that will give me a ‘bag for life’ in my permenant ostomy is taking it’s toll.  Not only physically, but emotionally too.

I’ve been comparing myself to everyone. To her career, her body, her free spirit, her perfectness.  I look at my sad, broken, scarred body and then look across at other women and feel thoroughly shit. I look at women with careers who are so clever and educated and brilliant and then feel bad about my cobbled together earnings. I see women living the dream, travelling the world, doing what they desire most and then look at my calendar filled with hospital dates.

sam cleasby blogger
Mainly, right now, it’s the body image thing.  And it’s hard for me to admit this as on this blog, I’m all about the positive body image. But this next surgery is so final. It will create an ostomy that can’t be reversed and so I know that for the rest of my life, I will have a bag attached to my stomach that collects poo.

I feel sorry for myself. There, I said it.

And even worse, I feel sorry for Timm. Poor lad really got the short straw when he ended up with me… I told him this during one of my wailing, howling sobs that have taken place this week. He smiled and said he’d got the most colourful and exciting straw. (That’s why we love him!)

It’s so easy to say that we should be positive about our bodies. And I do know I’m lucky to be here, still standing, after years of illness and surgery. But it’s fucking hard to be surrounded by images of ‘perfect’ women and to be imperfect.

On a good day, I can celebrate my ‘imperfections’. My size 16 body that has curves and soft skin, my strong, thick thighs and great rack.

On a bad day, I see fat, I see stretch marks, huge scars, boobs that sit that bit lower than before. And I think about the addition of another ostomy and it makes me cry.

I compare myself to women with ‘perfect’ bodies and make myself miserable.  I sit on this fine line between being terrified that my husband will leave me and the idea that he probably should as he’d be better off without me.

I think about how the man I love most in the whole world is also the man that I cause the most distress.  I worry about how much pressure he is put under every time I don’t feel well. I worry that it’s not fair to him. That he would be happier if I wasn’t here.

Having an illness or disability is fucking hard work.  It brings up so many feelings of pain and burden, shame and embarrassment. And these aren’t things that are easy to talk about.

But talk about them we must.

I don’t write them here to gain sympathy. I  don’t want anyone to feel sorry for me. What I want, is to share these shitty feelings because I don’t think I’m alone in this!  I want to share in the hope that if someone else is struggling too, that they will feel less alone.

sam and timm cleasby

I write because saying those words out loud are painful but the inability to speak them allows them to grow and mutate in your mind till they become bigger than everything else.

I write because I want to give others the courage to talk to their loved ones about how they feel.  To talk about the bad thoughts as well as the good.

It’s ok to speak out. It’s ok to be sad. It’s ok to be angry.

Logically I can dissect my feelings and come up with appropriate answers.  I know when I’m hating on my fat, I need to remember that when I’m feeling good, I love my body. And I really do! I remember that I need to speak positively about my body because it is listening and I know that when my head isn’t such a mess that I believe I’m a motherfucking goddess!!! Seriously, I’m fucking delicious.

I know I don’t need to be a size 8 to be beautiful. I know that my scars are interesting and are there because my life was saved.  I know that my stretch marks are there because my body grew and housed the three best kids in the whole world.

And I know that when my ostomy is back, that it will be there to improve my life.

I’m going to try to stop comparing my life to anyone else’s.  Not one of us is perfect. We’re all facing our own battles and we compare our worst moments with another persons highlights. We’ll never win that one.


Comparison is the thief of joy.  Remember that.
Sam x

Shit happens…

“So the decision is made? I’ll book you in for another ostomy”

Yep, the decision is made. This journey that started 2 years and 2 months ago when I had my colon removed and an ileostomy formed, is coming full circle and in early 2016, I will be going back under the knife and having a permanent stoma formed.  They will remove my Jpouch and make an ostomy from my small intestine and I will once again, have a bag. Though, this time it will be a bag for life. (Not the Tesco kind…)

I am still in hospital recovering from this latest bout of pouchitis and this week I have had to make some tough decisions. Do we continue to fight fires and keep having medication, hospital stays, exhaustion and generally spending 20% of my day on the toilet? Or do we go back to the ileostomy. 

I’ve had to be quite logical and unemotional about it all, thinking in terms of quality of life, work, family and prognosis of the jpouch.  I have been listing pros and cons till the early hours of the morning, imagining life with a stoma versus life with a Jpouch and all that comes with both scenarios. I have googled my heart out and spoken to Timm, the kids and to my fabulous consultant Mr Brown. 

And I have made the decision.  I’m booked on the urgent list for a pouch excisionand permanent stoma.  There will be no going back from this, I believe I’ll have the full on Barbie Butt! I feel relief in this decision, I know it is the right thing for me.  The pouch is fantastic for some people, but for me, it isn’t working. 

Only now, as I sit on the hospital ward, the lights dimmed and only the gentle hum of machines and whispers of nurses at their station, I feel very alone and very emotional.  

This isn’t fair. 

That’s how I feel. Like a bratty toddler. That I never signed up for a life of illness and surgeries.  I don’t want to live with a bloody ostomy bag stuck to me. I don’t want to spend so much time in hospitals. I don’t want to have to make life altering decisions that seem to have two crap endings. I don’t want to worry about being a burden to my family. I don’t want to be sick. 

And you know what, I’m totally allowing myself this rant. I think I’m entirely entitled to feel shit about all this. It’s ok for me to have a cry and feel sorry for myself. Because this is all not fair. 

It’s not fair that I’m looking at my fourth surgery in three years. It’s not fair that I have this illness, these complications. It’s not fair that my three kids are now used to seeing me in a hospital bed. It’s not fair that my husband has the options of a wife who shits herself or a wife with an ostomy bag. 

I have no positive spin today. No fun little meme with a quote by the Dalai Lama. 

Nope, I have pain. Raw, emotional, angry pain.  And that’s ok. 

Sometimes life throws absolute crap at you, we have to deal with rubbish situations that are difficult and make you sad and angry. Sometimes shit happens.  And it is completely fine to not be ok with that. 

Accept your sadness. Revel in your anger. Acknowledge your pain. 

Tomorrow is a new day and we can figure out the positive shit then… 

Sam x 

World Ostomy Day

Today is World Ostomy Day! This is like my poo lady Christmas!

When I had my surgery, I never thought I would be celebrating my Ostomy but as I have learnt to accept my illness, I can recognise that my Ostomy was the start of a new life for me. It is a different life to the one I imagined but my ostomy has had so many positive effects on my life.


Writing about ostomies, jpouches, IBD and invisible disabilities is an honour and a privilege and I have heard so many stories both of struggle and of overcoming adversity.


Today lets celebrate our ostomies whether we still have them or not!  I now have a jpouch and so no longer have my ostomy but I loved my stoma that helped my body come through ulcerative colitis.


Having your body change so massively can be a huge challenge, both physically, emotionally and mentally.  It can be a very isolating experience and so talking out about life with an Ostomy is so important to help others.  I speak out in the hope that people following in my path will have a slightly easier time.


If you need support or help, here are a list of amazing people that I would highly recommend.

Colostomy Association

IA Support

Crohns and Colitis UK

Feel free to share my World Ostomy Day images with links to www.sobadass.me or make your own pictures to share and celebrate!

 

Sam x