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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.

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.

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.

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!

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.

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

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 

Back in hospital

Hello you lovely lot. 

Firstly thank you so much for all the beautiful, supportive and caring messages I have received on social media, email and text. I was feeling very sorry for myself and your words really brightened my day. 

So I am back in hospital, I saw Mr Brown in clinic on Tuesday and he recommended I was admitted for some IV antibiotics, some fluids and tests. 

I’m still here and also on some pentasa foam and another drug to try and slow down my output. I’m still going to the loo 15+ times a day and its thoroughly exhausting. 

 
My blood tests have actually shown that my inflammatory markers have gone down which is good, but also a little concerning that I’m still feeling crap. I’m waiting to have a pouchogram which is an X-ray test where they fill my pouch with a fluid then X-ray me to see where it goes. 

I love that just when you think you’ve had the most embarrassing tests known to man, you then have to crap out X-ray fluid whilst a team takes images of you… The joys of IBD, eh?! 

 
But anyway, I have news. 

After much discussion with Timm, the kids and Mr Brown, I’ve decided that this pouch is just not for me. It’s been 20 months and 3 bouts of pouchitis, plus so much time feeling exhausted, ill and unable to cope. Going to the loo 15-20 times a day. I have concerns about the amount of drugs I take every day and the effect on my body and liver. And now the issues with my prolapse.  
I was so well with my stoma. I know it’s not ideal, but life isn’t ideal now. It’s about quality of life and currently my quality of life isn’t great. 

  
Mr Brown has put me on the list for January and so 2016 will be a new start with a new stoma. 

I feel relieved in one way as I just want to be well. But in another way, I’m just done in. I am feeling pretty sorry for myself and wondering when I get a break.  I’m so fucking fed up of this illness, it’s taking so much from me. It causes so much stress and makes life difficult for my family and friends. 

Poor old Timm is dealing with the kids, work and home life as well as my mental rantings and emotional breakdowns. I’m so bothered about being a burden to him that I’m actually being MORE of a burden by stressing about it. 

  
He brought the kids to see me which brightened my mood. I spoke to them about the stoma and they immediately said  “do it mum!”  I asked why and they said that when I had my bag, I was really well and we could do everything normally. They said my pouch means I’m always poorly and sick in bed.  This makes me so sad. But firms my belief that this pouch isn’t right for me.

I know it changes some people’s lives and is perfect for some. I don’t want to put anyone off Jpouch surgery because of my experience. As much as its not good for me, I am glad I tried as otherwise I would have always wondered ‘what if’. 

So there we go.  I shall update soon and as always you can find me on Facebook Instagram and Twitter

Sam 

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

Why you should go to support groups

I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK.  And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.

I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.

When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me.  I went along and entered the room, so nervous that I was shaking.  I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I think I was the youngest person there by 20 years.  That sucked.

As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative.  It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.

It made me realise that it is a vicious circle.  A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.

This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you.  It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good.  It’s inclusive, it’s helpful.

That feeling I had at the first event made me want to make things better for others.  This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.

I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections.  It is terribly advertised and so you may not even be aware of it.

public speaker about self esteem ulcerative colitis crohns ostomies colostomy ileostomy jpouch ibd

 

It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals.  If you have an ostomy and live in South Yorkshire, do consider coming along.

As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you.  We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more.  You can find the event here.  We are ever so friendly and we are a laid back group so please think about getting involved.

I do a lot of this stuff because I really do care, I want to make a difference.  I honestly believe that through speaking out and talking at events, we can help all others who follow in our path.  What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out.  Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.

So think about it, have a look at local events to you and consider attending just one.  If we all do that, imagine the army of support we could create!

Helping others and helping yourself.  Get involved.

 

Sam xxx