Posts

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

Clinimed Ostomy Skin Products

Clinimed are a company who supply ostomy bags and accessories and they sent me a goodie bag of products to try out, including medical adhesive remover in spray and wipe form, barrier creams, films and wipes and a carry bag.

I have to say that their carry bag is my favourite one so far, it is compact and has a hanger but the best bit is that it opens into a little shelf meaning when you are changing your bag out and about and inevitably there is no shelf or place to put your supplies, the bag solves that issue.  It also has a little removable mirror which is brilliant because as you may have found, many accessible toilets don’t have a mirror… Perhaps they think people with extra needs don’t want to look at themselves??


 Anyway, on to the products:

Firstly, I tried the Appeel medical adhesive remover.  This sort of product is a really important part of your ostomy kit.  When you are removing your bag without this, it pulls at the skin and can make it very sore, so it is something I use at every single bag change.  I use the spray to remove my bag by applying the liquid from the spray can, the cans are small and easy to fit in your kit and a little pump of the can gives out a lot of the product.

ostomy medical adhesive remover

I sprayed it on the flange of my ostomy bag and gave it a few seconds to get to work before peeling off my bag.  It worked really well and left my skin feeling quite moisturised, some sprays I have used before felt drying to the skin.  I then use the Appeel adhesive remover wipe if there are any residual stickiness around my stoma, this is particularly good for me as I am using a paste around my stoma and if that is still stuck to my skin, it can be tricky and painful to remove.

I also tried the LBF barrier range, this comes in a few different mediums which is good to have the choice as everyone has different preferences.  There’s a barrier film spray, film wipe, foam applicator and a barrier cream that comes in a bottle or sachet.  Barrier creams and films are used to create a protective layer between your skin and any ostomy output that could get on your skin.

The most important thing with ostomy care is looking after your skin.  The output from your stoma is very acidic and can burn the skin, also the act of sticking and removing bags all the time can have a negative effect on the skin.  If your skin gets open sores then it becomes wet, and ostomy bags don’t stick to wet skin, this can cause leaks which then makes the skin even more sore.  It is a vicious circle that is miserable to get out of, and so barrier creams and films are essential.

After you remove your bag and have cleaned your skin, you apply the barrier in whichever form you have chosen, allow it to dry and then apply your ostomy bag.

I prefer the barrier film wipes, I find them really easy to use, and like that I can put it exactly where I need it and then dispose of the wipe in the bag with my used ostomy bag.  The spray works just as well, but for me, I don’t like that it isn’t quite as direct, it sprays across a wider surface rather than dabbing it exactly where I want it with the wipes.  But then I have friends who would much rather use a spray can, you should try both and see what your preference is.

ostomy barrier cream

The barrier cream, in my opinion, is great for people with a jpouch for the dreaded butt burn, it is a light cream that feels nice on the skin and creates a barrier from the delicate skin around your bottom and the acidic waste output that you are passing.  I like it for skin around my stomach too where I have soreness but for around my stoma, it isn’t my favourite medium.  This is because I feel that any cream has to it a certain greasiness and that concerns me with the bag then sticking over the top of that.

You use the cream sparingly and rub it in well, but I found myself waiting a long time to then apply my bag as I was worried that the cream would make the bag stick less well.  For convenience sake, this is why I prefer the wipe.

The LBF barrier wipe dries in seconds, you clean your skin and then rub the wipe on your skin where it could come in contact with output.   It is a sterile product and so you can use it on broken skin and is no sting which is great as when you have open sores, the last thing you want is to put something on that will feel like salt in a wound!

There are lots of different ostomy products about and it can be confusing to know which one will suit you.  I also find that most people end up using the product that is first given to them by the hospital or stoma nurse, sometimes not knowing that they have options.  Everyone has the freedom to choose what sort of supplies they would like to use and a way to do that is to request the free samples from companies.

sam cleasby blogger ostomy ibd disability

If you would like to try any of these products, you can request free samples here or if you aren’t too sure what you’d like to try, you can speak to an advisor.  You can also call them on 0800 036 0100.  I’ve found the staff really friendly and helpful, so don’t worry about any ‘stupid questions’, there aren’t any stupid questions!!! There is tons of really useful information on the site, though if I am honest, it is a little clunky to find, but bear with it as I have just been reading up on more info on dehydration and found it very helpful!

So there we go, another ostomy review.  I love having the opportunity to try new products, but remember that you can try things too.  Don’t be afraid to get in touch with ostomy companies and ask for free samples of their products, there are so many different things out there and you have the ability to try them out.  Your ostomy is here and you have to live with it, but you don’t need to be suffering.  If you are having issues with your stoma, please speak to your stoma nurse and try different products till you find things that suit you.

 

Sam xx

 

Disclaimer: From time to time, I am either sent products for free to review or I am paid to review them.  This sort of work pays for the running of this site and keeps me in Gin and sparkly shoes.  I only work with companies who I feel are a good fit and who have products/events that I feel would benefit my lovely readers.  Whether I receive free products, or I am paid, my reviews are honest and all my own opinion.

Opus Healthcare Ostomy Support Videos

Last year I had a day filming with Opus Healthcare, I have used their products before and was asked if I would help them on a project where they wanted real life people with ostomies and jpouches to talk openly about their lives.  It was a lovely day with three others, Luke, Charlotte and Amanda and it was really interesting for me to hear their stories too.  This was when I still had my jpouch before my latest surgery.

Take a look at the videos below, starting with my introduction.  I need to point out that on filming day, I was so ill with pouchitis, I ended up in hospital for IV antibiotics shortly afterwards so if I look a bit sweaty and manic, you can understand!

And here is Charlotte!

 

Have a look on the youtube channel for the other introductions.

First we talked about diagnosis…

 

And then we talked surgery… 7 out of 10 people with Crohns Disease and 3 out of 10 with Ulcerative Colitis will have some type of surgery in their lives.

 

People with IBD will tend to have an embarrassing story, this can be really isolating, but sharing your story can make you feel better.  We talked embarrassing experiences.

 

But we also have a LOT of positive experiences too…

 

Their are so many different accessories and products out there, it can be a bit confusing.  We talked about knowing about products and how to try new stuff.

 

I genuinely LOVE the Lift Plus 360 adhesive remover (I am not paid to say that!!!) it sprays at any angle and works really quickly.  Here Amanda demonstrates the product.

 

We finished by talking about something that is so important, support.

 

You can find out more about Opus on their website and view all their videos on their YouTube channel.

 

Sam x

 

 

Disclaimer: This is a sponsored post by Opus Healthcare.  Every now and again, I am sponsored by companies who I believe are of interest to my lovely readers, this allows me to continue with the blog and keeps me in pretty, sparkly shoes.  I only work with companies who I believe are a good fit with So Bad Ass and who have content or products that my audience have an interest in.

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

This Morning with Philip and Holly… And So Bad Ass

Yesterday was a whirlwind of awesome! I appeared on ITV’s morning show This Morning and got to meet the very wonderful Philip Schofield and Holly Willoughby and talk about my all time favourite subject, poo!

I was invited on by TV and radio personality Judi Spiers, who along with her husband, invented a product to help people to change ostomy bags.  I reviewed the Riksack for them last month and they had been invited onto the couch for National Bowel Month and asked me to go with them.  Hooray!!

The researchers got in touch and had seen my blog and thought I would be great on TV, which was a huge compliment, almost as exciting as when they told me that Philip had been reading my blog and loved it! Arghhh!!!! So, if you are reading this now Mr Schofield, hiiiiiiii you are a living legend and a total fox!

I got the train down to London the night before after a traumatic decision over what to wear on the telly box.  I asked my awesome followers on Facebook for advice and advise they did… Over 300 of them, though unfortunately all saying different things!! In the end I went for a flowery dress by Lindy Bop which I felt comfortable in and also felt fab in.  Of course, I also wore my sparkly, gold boots.

What do I wear on the telly box?! Excuse my wind swept hair and grey socks! 😂

A post shared by So Bad Ass (@samcleasby) on

I got picked up in a car from my hotel and taken to the studios, hilariously there were some paparazzi hanging out and they got excited as I pulled up.  Unfortunately they were super disappointed when I got out of the car, I still waved and smiled just in case! (HA!)

The staff at This Morning were all lovely, very welcoming and trying to put you at ease, there were drinks and pastries and snacks but I didn’t eat as I didn’t want my stoma farting and bag filling up on live TV.  I went into hair and makeup where I was attended to by #MrFaceMaker and then back to the Green Room I went.

In hair and makeup with #mrfacemaker at #thismorning 🙌🏼

A post shared by So Bad Ass (@samcleasby) on

I filmed a pre recorded piece where I changed my ostomy bag using the Riksack, I was hoping to be the first stoma on live TV but alas, they cut that part out of the live show.  It was a bit odd to change my bag in front of strangers, the team were very sensitive though and made sure it was just a producer and a cameraman.  After changing my bag, I asked the producer what she thought, she admitted that she had been concerned as she was squeamish and was worried that it was going to be difficult to watch, but she was amazed that my stoma was so small and not nearly as terrifying as she had imagined.

This is why I do all the things I do, to change perceptions and break those taboos.

#thismorning

A post shared by So Bad Ass (@samcleasby) on

So we then went onto set (which is much smaller than you imagine and all in one room) and I met the King and Queen of daytime TV, Philip and Holly.  Philip came over and kissed me and welcomed me to the show and I went over to Holly… and curtsied.

WTF? Whyyyyyy would I do a curtsy?? I was just a bit star struck and then I laughed and said “Oh.  I just curtsied” THEN CURTSIED AGAIN!!!

This is why I shouldn’t be allowed out in public.

Anyway, they had a laugh at my weirdness and then we sat on the sofa, I was with Judi and surgeon Mr Ian Daniels and off we went…

The interview went quicker than you think it will, it seemed to be over in a flash and then we were done! I wish I had said more but the slot was about the Riksack product and about signs and symptoms of bowel disease and bowel cancer and so it was important to get that info out.

I loved every minute of it and would love to do more TV as though it is terrifying before, it is so enjoyable once you are there doing it.  It is hard to get a lot of info into a 7 minute slot, especially when there are three people being interviewed it is nigh on impossible to say everything you want.  So apologies for not getting a bit more So Bad Assness out there!

Arrrgghhhhhhhh they were so lovely!!! Hope I did you all proud!!!!

A post shared by So Bad Ass (@samcleasby) on

Holly is as beautiful in real life as she is on TV.  Seriously, I was a bit in awe of her and she was really sweet and lovely.  She was very friendly and complimented my dress and they both congratulated me on this blog and my work in disability.  Philip is a total fox.  I loved him in the early 90s with Gordon the Gopher and can’t believe I got to meet such a famous celeb.  He was really friendly and put you right at ease.  People have asked me to dish some dirt on the two of them, but I cant! They were just lovely!

I am really proud of myself.  The past few years have been hellish and there were times when I was in HDU or crying in pain in bed or leaking and feeling like a monster when I felt so low that I couldn’t imagine going on.  So to be on live TV four months after my last surgery was a HUGE milestone.

I do what I do to make others understand what life with an illness or disability is like, I do it to break taboos, to educate, inform, support and inspire.  I do it to make a difference.  I do it because I need a reason that I have had to go through all this.

#thismorning

A post shared by So Bad Ass (@samcleasby) on

I didn’t plan for my life to be a series of battles, of medication, surgery, illness, pain and suffering.  But this is the hand I was dealt and so I will use every single one of these things to help others and make a difference in the world.

You can view the interview below, thanks for all the lovely messages on Facebook and Twitter, they mean everything.

Sam xx

Riksack review – ostomy products

I reviewed the Riksack recently for Stomaworks, it’s a product to help users change an ostomy bag with less mess and more ease.

Take a look…

 

 

Sam xx

 

Disclaimer: I was not paid for this review but did receive the product for free.

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