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What do you call your stoma?

When I first had a stoma, the nurse told me that lots of people name theirs and it helps them to come to terms with it.  I believe I wanted to tell her to f**k off, though I held my tongue.  I just wasn’t ready to have that conversation.

I am comfortable with my stoma now, but at the time I remember being laid in HDU and not wanting to look down. I just didn’t want to see it or deal with it, it was such a huge ordeal to know that my body had changed so much.  I remember laying in the bed and turning my head to the window, counting the slats of the blinds as they checked my wounds and changed my bag.  I couldn’t look…

When I did, I was shocked.  A stoma (when we are talking about an ileostomy or colostomy) is the end of your bowel that is pulled through your abdomen wall and stitched to the skin.  It looks like a red or pink, wet, soft lump with a hole in the middle.  So it is a big shock when you see your insides on the outside for the first time!

stoma ileostomy femininity #stomaselfie woman with stoma ileostomy ostomy stoma images

But over time, I got used to it quite quickly, I realised it was my life line, that it had saved my life and it was nothing to fear.  It was part of my body and I started to understand that people name their stomas as part of the idea of coming to terms with their new body.  Naming it can feel like you are welcoming it into your life.

I named my stoma Barack Ostoma… I wanted something funny but also quite grand!  I then had jpouch surgery and so Barack left office, as it were.  After 18 months of chronic pouchitis, I had stoma number two.  I only have one stoma now, it is a permanent ileostomy, but in numbers I have had, it is the second one.  This one is called Babadook, due to the weird creaking, farting noises it sometimes makes and the fact that baba and dooky are terms for poo, so it seemed to make sense.

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag stoma

 

So my question is, what, if anything do you call your stoma, and why did you want to name it or why did you choose not to name it.

 

Sam xx

What to do with a stoma blockage

If you follow me on Facebook and twitter, you may have seen that I have had a blockage in my stomach for the past couple of days.  It started with crampy stomach ache and a realisation that my ileostomy bag had not been filling as it usually does, it was very empty and the stuff coming out was watery and dark.  I was sweating and nauseous and feeling terrible.

I have had this before and recognised the symptoms of a blockage (or bowel obstruction).  This is when something is preventing stool from passing through the intestine in the normal way.  IA Support uses an analogy of a garden hose to help explain what is happening when you have a bowel obstruction.

“If you stand on a garden hose, water cannot pass through it. The tap keeps pumping water into the hose but it cannot get past your shoe. Soon, as the pressure from the tap continues to pump the water, the portion of the hose above your shoe starts to expand and swell up with the backed up water. If you do not remove your shoe, the pressure inside the garden hose will cause it to break open and leak. The same principles apply to your intestine.”

stoma blockage how to relieve symptoms of bowel obstruction

Signs of a blockage can include

  • Swollen stoma
  • Distension of the abdomen
  • Minimal or no stoma output
  • Cramping and pain
  • Nausea and vomiting
  • Muscle cramps
  • Dry mouth, decrease in urination

You can find out more on their site, I knew I didn’t have a full blockage as I was passing some stool but I mentioned it to my stoma nurse who reminded me of how to relieve symptoms at home and so I thought I would share them here. (Via IASupport)

DO

DON’T

  • Stop eating solid foods
  • Increase fluid intake (tea, cola)
  • If the stoma is swollen, remove thepouch and replace it with one with a larger stomal opening
  • Take a laxative or any other medication without consulting a doctor
  • Drink or eat anything if you are vomiting or not passing stool or both
  • Soak in a warm bath to relax the abdominal muscles
  • Massage your abdomen or try a knee-chest position
  • Call your doctor if the pain is severe, or you have symptoms of dehydration, even if the symptoms have not lasted 8 hours
  • Have someone drive you to the doctor or hospital
  • Insert anything inside the stoma unless you have been instructed to do so by your healthcare professional
  • Wait too long to call your doctor

A bowel obstruction or blockage is a serious condition and you should not ignore it as it can sometimes turn into an emergency situation.  Always get in touch with your stoma nurse if you can’t relieve the symptoms or if you are in a lot of pain, passing no stool at all and vomiting.

I am happy to say that my blockage passed at home with me using the above treatment, plenty of fluids, hot tea, heat pads, a bath and gentle tummy massage.  Though now I am left a bit exhausted and drained, I was wondering why but I think it may because I haven’t been absorbing all the vitamins and minerals over the past couple of days.

I know we all like to have a google but just remember that the internet is not the best place for medical advice, speak to your stoma nurse or doctor and listen to your body.

Sam xx

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

Kintsukuroi – more beautiful for having been broken

It has been four weeks now since the big op and I am beginning to get used to life with my ileostomy, it has been a bigger change than I thought.  This is the second time that I have had a stoma, the first time was two years ago and then I went on to have a ‘reversal’ where I had a jpouch, when that failed, the decision was made for me to go back to have an ileostomy.

I really thought that as I have been through the shock of this surgery once already, that I would be better equipped to cope this time round.  And in many ways I have, the knowledge of how to change my bags and care for my skin have meant that I have been able to dedicate my time to recovering from the operation rather than learning the technical side of life with a stoma.  But it has still knocked my confidence.

stoma ileostomy femininity #stomaselfie stoma ileostomy femininity black and white photography creative shoot

I think it is the knowledge that this stoma is permanent, it is a bag for life.  It was a necessary move but one that I wasn’t entirely happy with, and so I have had some negative feelings about my bag.  I have felt self conscious, embarrassed and upset.  I am trying to remember all the positive things to have a stoma, the health benefits, the lifestyle choices, but it is still a blow to be back with my bag and I have been struggling to come to terms with it.

Today I read about a Japanese art form called kintsukuroi, which means “to repair with gold”.  When a ceramic pot or bowl breaks or cracks, it is put back together again using gold or silver to create something stronger and more beautiful than it was before.

kintsukuroi

It doesn’t hide or cover up the damage, it embraces the crack and acknowledges the history of the object whilst celebrating it’s imperfections and flaws.  It is the art of understanding that the object is stronger and more beautiful because it has been broken.

What a gorgeous sentiment!

It got me thinking about my stoma and reminded me that how we see things comes from our attitude.  I can choose to feel sad that my body is covered in scars, that it’s broken and damaged.  Or I can think of myself like Kintsukoroi, I have been repaired with something precious and I am stronger and more beautiful for it.

I think I’ll choose the latter.

Sam xx

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

 

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

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 

Coloplast Care

The folk at Coloplast have developed a new support programme for people with an ostomy called Coloplast Care which is a fantastic idea and great development for ostomates everywhere.
Whether you are facing surgery, a new ostomate or had your ostomy for years, Coloplast know that each person is totally unique and therefore their needs for support are so different.  The great thing about Coloplast Care is that it is a bespoke and individual plan that aims to help in everything from the basic medical principles of an ostomy to the practical things you can expect as time goes on.  Offering information and support both physically and emotionally and giving you back a level of control to empower you in your new life.
I would have loved to have had this programme two years ago when I was facing surgery and think it is amazing how much ostomy support is moving on.  I remember the feelings of isolation, confusion and upset and just not having all the information.  Though my doctors and stoma nurse were wonderful, the questions I had always popped into my head at 3 am meaning I would find myself frantically googling away to figure out what I could do and sometimes felt very alone in the vast internet world of differing opinions.
coloplast care ostomy support
Whatever stage you are at, from complete newbie novice to old pro, we all still have questions, no matter how ‘sorted’ you are, a new situation can always pop up and create distress in not knowing how to handle it.  Coloplast Care advisors are there to guide you through stoma routines, ostomy accessories, check ups and so much more.

It’s not just for people who use Coloplast products; it’s open to anyone so do go take a look no matter which products you currently use.  It provides specific support and advice to each member based on your needs, whether your issues are emotional or if you have just had surgery, or perhaps you have had your stoma for 5 years but you are off travelling and need some advice, the programme tailors advice and support for the problems you are having right now.

So how do you join?

coloplast care ostomy support

It’s quick and simple, head over to the sign up page, fill in your name, email address and what sort of surgery you have had (or are expecting).

On the ‘Experience’ page, you are asked about any issues you may have with adhesion problems, skin irritation or pouch problems.

coloplast care ostomy support

The “Wellbeing’ page questions how you are feeling, with more in depth questions about your support, worries and emotional wellbeing.

coloplast care ostomy support

And that is the basic sign up done!  You can then go on to answer more questions about yourself and your situation if you like.  I would recommend this as they more information they have, the better and more useful support you can receive.  This includes more about you, how you live, your age, hobbies, activity levels and then information regarding your current ostomy products, shape and size of your stoma, position, how your body and skin is.  All this data is used to tailor your programme to you.

If you struggle with technology or are unsure on how to work the forms, do ask a friend, family member or a health professional to guide you through.  But it is very clear and simple to use.

The company’s ethos is to ‘listen and respond’ and so the website is chock full of advice sheets, support guides and problem solving information. It also includes a system to help ostomates identify problems that they’re having for example skin irritation, pancaking etc.  This means you can print off and discuss these issues with your stoma nurse, or request a call-back from an advisor, as well as the programme recommending some products to try and resolve these problems.  This isn’t to replace the advice from your doctors and stoma nurses but additional support that gives you the power to be informed and proactive.

It can be quite overwhelming when you see the amount of choice when it comes to ostomy bags and accessories, so to have a programme that goes through your needs and then shows you options is fantastic. You can also order free samples through the site to try out before committing to a new bag.

stoma ileostomy bag woman junk food ulcerative colitis crowns ibd

 

Another part that is just great is the Ostomy Check, around 40% of people with a stoma have an issue that they are just putting up with, that they think is something they just have to live with.  The Ostomy Check is there for people to see what is ‘normal’ and what is an issue that they could do something about.  Coloplast support staff will send an email asking them to complete a checklist every couple of months.  I think this is a fantastic service that is patient centred, it is nice to feel cared for and sometimes after you have left hospital, you can feel isolated and not sure where to turn for support and advice.

I have met a lot of ostomates who have told me of issues, from slight niggles to huge problems, that they believed where part and parcel of life with a stoma.  This service allows people to see exactly what can be done to help and support them.  One person noticing an issue and recommending a product could change a person’s life!

As with everything, your stoma and ostomy needs change over time and the brilliant thing about Coloplast Care is that is adapts and changes with you.  This isn’t about a one size fits all support as that just doesnt work! The programme adapts and grows with your needs, tailoring advice to what you need, when you need it.

I have spoken to a few ostomates using the Coloplast Care programme and all have found it helpful, many saying they wished this was around when they first got their stomas.  I think we need to empower and educate ourselves about our health and this system helps you do that.

Head over to Coloplast now and check it out, it’s free, easy and if you don’t like it, you can opt out no problems!

 

 

Sam xx

 

This is a sponsored review, meaning that representatives of Coloplast Care have paid me for this post, but it is my own, honest opinions.  From time to time, So Bad Ass reviews products and services for companies, but I only share things that I believe benefit my amazing readers.

#stomaselfie – going viral again!

I am very proud of the photographs I had done with my stoma and ileostomy bag and last week, they went viral!  Appearing in the Metro, Daily Mirror, BT online and The Independent as well as media outlets around the world including lots in Scandinavia, my photos went a little crazy under the hashtag #stomaselfie.

stoma ileostomy femininity #stomaselfie

The purpose of the photographs were to lift the veil, so to speak, on what is under the ileostomy bag.  When I was in hospital before my surgery to remove my colon, I googled images of stomas and I was horrified, all the images were very medical, many stomas that were having issues with prolapse or infection and my fear was intensified.

What I wanted was to show stomas in a way I hadn’t seen before.  To show that my stoma didn’t remove me of my femininity, sexuality or who I was.  I wanted to show the world that it was nothing to be ashamed of, that I was proud of my ostomy and that it really wasn’t as terrifying as I had once imagined.

stoma ileostomy femininity #stomaselfie woman with stoma ileostomy ostomy stoma images

 

I have received many messages of support of these photos, telling me that I am helping to reduce the taboo and stigma.  For that I am very proud and though I was afraid to first show these, I am happy to know that by sharing the images, that I am making a positive impact to the lives of those with stomas.

I know it is a little controversial and some people don’t think I should be showing my stoma, some think it is akin to photographing your bum hole and so it is inappropriate.  Some think it is just a little gross… But the truth is that millions of people worldwide live with a stoma, and if me showing these photographs help just a few of them, then I am happy.

stoma ileostomy femininity #stomaselfie stoma ileostomy femininity black and white photography creative shoot

Unfortunately, some media outlets have got the information wrong and say I have crohns, a colostomy and that these images were inspired by Bethany Townsend’s bikini shots, the truth is I have Ulcerative Colitis, I HAD an ileostomy (I now have a jpouch) and these shots were taken and shared in October 2013 well before the shots of others with ostomy bags went viral!

Thank you to the Metro, Daily Mirror, BT.com and especially The Independent for sharing the photos and spreading awareness, pride and support for people with ostomies around the world!

#stomaselfie sam cleasby stoma ostomy photo shoots sam cleasby

 

Unfortunately, there have been some nasty comments, but I know that putting yourself out there with images like this will always divide opinion.  I know that showing my stoma will bring out the worst in some, but it is so important to share to try and change the opinions of those who think it is “disgusting”.  I receive thousands of amazing comments filled with lovely words and I know I make a difference.  I don’t do this to get attention or for likes on Facebook!! Hahaha!!! I do it to make a difference and I believe that I do.

nasty Facebook comments trolling internet keyboard warriors #stomaselfie

 

Nice, huh? But then you get comments like this that make it all ok…  

“Certainly brave, and since the photos have popped up online I’ve shown my son – 4 years old why he has such a large scar across his tummy and what used to be there. It’s not something I’d ever Google to show him, but because it had popped up I thought it would be helpful for him to see and understand why it’s there”

“The whole point of these photos is to empower and take away any found shame about having a stoma! People will never ever feel the depth of pained shame to having a stoma and just how much it affects people’s lives and how it affects confidence in relationships and families. Complaining about such fickle things as people’s levels of decency is, to me, insulting! … and above all ignorant!”

“a stoma is like having an artificial leg you would never turn round to someone on the beach and say eeww put that away…I’ve not long had mine and at the start I was devastated as I had always been aware of my figure but my stoma saved my life and when anyone says anything negative about it…I just think I had hours to live and that was my only option…it saved my life”

“Amazing wonderful beautiful strong brave are just a handful of words I would use for these people. Much more than I ever will be! Some of the comments on here are just disgusting, but I dont expect anything less from uneducated morons who havent got a slightest clue on what a “real” issue really is! The models in these photos are heroes in my eyes!”

You can see more of my shoots here, here, here and here.  All photos are by Timm Cleasby at The Picture Foundry and are copywrited, please don’t use my photos without permission as it makes us a bit sad.  Get in touch and we can discuss usage terms.

 

Love Sam x

 

I <3 MY STOMA

After a year of blogging here at So Bad Ass I am OVER THE MOON to see so much about IBD, Crohns, Colitis and living with an ostomy in the media.  It is a really exciting time and Im so pleased to see stories and pictures in the news and going viral.  As you may know my aim is to #stoppoobeingtaboo and so it is fantastic to see the disease and treatments being talked about.

Im loving the bikini shots doing the rounds, I have been open and shared my photos for the last year as I think it is so important to demystify and show the reality of having an ileostomy or colostomy bag and so I think the other people sharing their pictures are just brilliant.

 

 

ileostomy bag and fashion swimwear

 

 

I am now 7 weeks post pouch surgery and so I am learning to live without my ileostomy after 9 months with my stoma and bag but it got me thinking about how that bag changed my life so massively.  After ten years of ulcerative colitis and endless hospital stays, medication and different treatments I had surgery to remove my large intestine and an ileostomy formed.

For the first time in so long I suddenly felt like I had some control back in my life.  Don’t get me wrong, it was major surgery and the recovery was tough but I was no longer going to the toilet 20-30 times a day, I wasn’t bleeding or in pain and it changed my life in such a positive way.

It was a big decision and a terrifying one, but it was the right thing for me and I honestly did love my stoma.  It was a funny little thing, I had no control over it and it bubbled and trumped whenever it felt like it.  I named it Barack Ostoma (no real reason, I just love a pun and it made me laugh!) and it allowed me to go traveling to Vietnam and Australia just three months after surgery, something I couldn’t imagine trying to plan whilst being ill with Ulcerative Colitis!

And so today I just want to celebrate my stoma and ask you to share my post, let’s show the world what is under the bag.  It isn’t terrifying or ugly, it isn’t dirty or something to be ashamed of, it is a surgical alteration to the body which changes lives and helps people live again.

I <3 my stoma.

What do you think of it?

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Love Sam xxxx