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!
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.
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.
In November last year, I did something ridiculous, like really, really stupid. I can’t believe I actually did it! Two weeks after having a MASSIVE double hernia operation that cut me from sternum to pelvis, fixing an incisional hernia that had come out and got twisted and stuck and a parastomal hernia that involved completely resiting my stoma, I went traveling to India.
Do not try this at home! I am a big fan of travel and your illness shouldn’t stop you doing the things you want to, but two weeks after major surgery is a bit flipping moronic to be honest!!
The surgery was an emergency, I knew I had the hernias and there was an op to be planned for later in the year, but one day I sat on my bed and all of a sudden my hernia in my middle just fell forward and stuck there and was AGONY. I could barely breathe, I called my husband and told him to get home from work, I knew something bad had happened. I got to hospital and was sent straight for scans where they told me that I needed an emergency surgery.
It was scary as hell, but what was playing on my mind was that we had a trip to India booked for two weeks time. My grandfather passed away last year and as a family we had planned a huge trip to scatter his ashes in my grandmother’s hometown. He was a goalkeeper as a young man and the local football team had planned a memorial service to him with members of my family playing a game against them!! It was a three week trip that I couldn’t comprehend as I couldn’t even walk, but I knew I had to make it.
And you know what? I am so glad I did. It was one of the most beautiful and soul warming times of my life, twenty odd family coming together and remembering, singing, laughing, crying. Being there with my grandmother and my kids was so special, it is something I will never forget.
Was it tough? Oh, hell yes. My surgeon allowed me to go but I had to give myself blood thinning injections every day for the whole time we were away. I could barely stand let alone walk and so we got a wheelchair. I was on painkillers and all manner of meds and was high as a kite some of the time. I was exhausted and there were times when I slept where I fell. But luckily I had my awesome Timm and the kids right by me, they pushed my chair, they held my hand when I had to inject myself, they let me rest and had fun with me when I was awake, they made it possible and I am so grateful.
So the trip itself, we flew to Delhi where we met up with a cousin who looked after us whilst we were there and took us all over this breathtaking city. We had a day trip to the Taj Mahal (in a wheelchair!) and we explored some amazing sites. It was hot, dusty, sometimes smelly and quite overwhelming but it was an experience. As a bolshy feminist woman, I have to say that Delhi isn’t my favourite spot, I found most men either dismissive of me, or aggressively suggestive and I found that really difficult. It’s the only place I have ever been where I felt that I couldn’t walk down the road on my own, there was a point where I felt so uncomfortable by a group of men surrounding me that I latched on to my cousin’s male friend as though he was my partner. That doesn’t sit well with me and I hated that I felt so powerless and vulnerable.
From Delhi, we flew to Goa for a week’s relaxation in the sun and it was heavenly! Goa (and India in general) is not wheelchair friendly, accessibility is not a key feature in anywhere we went and if nothing else, it made me appreciate living in a country where at least we are trying! Goa also gave me chance to wear my awesome cat swimming costume from Vanilla Blush, who make ostomy underwear and swimwear.
It was beautiful and I would love to go back. In Goa I had an issue with my stoma that got a bit scary, it sank in completely and disappeared into my body meaning that every bag was leaking everywhere, that meant my skin was red raw and bleeding and I couldn’t move as bags were literally slipping straight off me. In a 24 hour period, I used 12 ostomy bags!!!
I was in a panic, but I texted my stoma nurse who calmed my nerves a little and advised me to take lots of loperamide and ensure I wasn’t getting dehydrated by taking dialyrites. I felt so shit, here we were in this amazing location and I couldn’t leave the bathroom!
Luckily Timm came to my rescue. He took the mattress from a single bed and dragged it onto the balcony, he layered it up with bed mats, towels and pillows and made me a day bed where I laid looking out over the most perfect beach and sky, bag off, catching poop in a tissue and getting air to my skin. It was a moment where I could have felt really sorry for myself, but instead I thought about how my view could have been a hospital bay and if recovery at this point meant laying in front of this vista then life couldn’t be too bad!
From Goa we headed to our family home in Mizoram, Aizawl to a fabulous family welcome. Family had flown in from all over to congregate in this very special place to celebrate a very special man. From start to finish, it was almost overwhelming in it’s wonder, the football match was emotional beyond belief but watching his ashes hit the pitch where he had played 70 years earlier was astounding.
The family parties, food, singing, laughing, crying, the sites and sounds, the connection and the wonder was all pretty much the best experience of my life. Sitting with my cousins in a land so far from our own homes but seeing where our grandmother was born was awe inspiring. Seeing so many family members coming together to fulfil my grandfather’s dying wish was spectacular.
Ostomy wise, there was a rather horrific hiccup. You know the warnings of Delhi Belly? Well, we got Aizawl Arse… I have no idea if it was the food, water, a bug or all of the above but I got the worst belly of my life. I sat on a toilet with the bottom of my bag open into the loo and watched poo run out of it like it was coming from a tap for about 25 minutes…
It was at this point where I was glad I was a seasoned stoma owner as I think I would have panicked if not. I knew that if this passed in 24 hours then it was travellers tummy and I would be fine, but I knew that at the rate I was losing output that it would be dehydration that would be the ruin of me, and so I made up 2 litre bottles filled with dialarytes and sipped on the constantly, I was sat on the toilet drinking them, gagging, puking and shitting but I kept going.
Dehydration is so underrated, especially if you have a stoma, it isn’t about being a bit thirsty, it is about your body shutting down because it doesn’t have enough hydration. Remember that water is not the best thing in these situations, a rehydration solution is needed, if all else fails, it is sugar and salt in water or even Coca Cola! Just drink, little, often, the whole way through. It was the worst 24 hours ever, that bathroom was a hellish place but luckily it soon passed and my litres of rehydration did the trick and I was straight back up on my feet!
Timm got it the following day and he said he has never in his life been so ill, he wouldn’t listen to me about drinking and ended up being vaguely ill for weeks. I honestly think it is because he puked and shat out ever electrolyte in his body!
Travelling with an ostomy so soon after surgery means being hyper aware of your body and your needs. I knew I needed to listen when I had to rest, I ate well and drank plenty, I made sure I avoided local water and ice and rinsed fruit in bottled water. I enjoyed myself but also allowed myself time to recover.
My other advice is to be prepared. This. is. vital.
Ostomy bags – take at least twice as many as you think you will need. I usually change my bag every 2 or 3 days at home, but planned for once a day for the trip and then doubled it. If I hadn’t, then the Goa experience of 12 bags in one day would have screwed me completely!!!
Plenty of supplies – dry wipes, any creams, pastes, rings etc that you use. Pack anything you COULD need, so if you occasionally use paste but not often, definitely pack it.
Medication – All your usual medication, in it’s original packaging with either a letter from your doctor or your repeat prescription.
Ostomy Card – I got one of these travel cards from my stoma nurse, it has an explanation of your stoma in several different languages. We realised that it was in Hindi and so used google translate to print it out in the native language of the country we were visiting.
Lots of waste bags – obviously needed for bag changes, but also good for sticking soiled clothes in till you can get them washed.
Dialaryte (or any other type of rehydration powders) – LOTS of them! They are small and easy to pack in and can be a literal life saver!!!
A readiness to listen to your body and a sense of humour!
I look back now and I can’t believe we actually managed this, but though it was crazy, I have to say, I am so pleased we did and I am proud of myself.
Love Sam xx
I get this from time to time, the sad face, head tilted to one side, sometimes there are actually tears in the eyes. The look of full on pity, perhaps a hint of ‘thank fuck it’s not me’ mixed with horror.
“Ohhhh, I do t know how you cope!”
I cope because I have no other choice. I actually hate the word ‘cope’. It’s nonsense isn’t it?! Coping simply means getting through each day, each hour, each minute. There’s no opt out in life (well, there is but let’s not go there), you can’t choose to not be ill one day, you can’t pop off your stoma and reattach your arsehole. So asking me how I cope sometimes feels like you’re asking how I am still alive. How I’ve chosen to live even with this disability.
Perhaps I’m being over sensitive, but sometimes I can’t fucking stand the sad looks I get, the pity, the tilted headed frown.
When I talk on here, in public, on social media, it’s not because I want your sympathy. I just want you to understand a little more. I don’t want to feel like you are appalled by the realities of my illness, I just want you to know what they are.
I had a big leak recently and someone saw what had happened and the aftermath. They said with utter horror and sadness “ohhhh Sam, it’s just awful!!! I don’t know how you can live with this! How do you cope?! I couldn’t do this!”
I don’t think they meant to be hurtful, I don’t think they realised that their words hurt me far more than the blockage that had caused my bag to block up and push away from my skin.
Perhaps I’m being unfair in expecting understanding without sympathy, care without pity. After all it’s hard enough to understand my own feelings let alone expect others to know how I need them to react.
Just remember for the future though that I really don’t want you to feel sorry for me. We can talk about it, we can say that it’s shit (with every pun intended!), we can discuss how it’s sometimes really, really fucking hard to have a chronic illness and a disability.
Take my lead, if I’m crying then please care for me and give me a hug. But if I’m just dealing with my usual day to day life, be aware that your pity can make me feel like I’m a second class citizen, it makes me question your thoughts on me and my life. Your tilted head sad face may be well meaning but feels patronising as hell.
✌️ & ❤️
Three years ago today, I was wheeled into theatre and had my colon removed and my first ostomy created. I’d been in hospital for weeks, and this was the end of the line after 10 years of ulcerative colitis. At the time, I thought it would be the end of all my problems and though I was upset, distraught and terrified, I truly felt that I could start a brand new life without illness.
In the past three years, I’ve had three further surgeries, multiple hospital visits and I’m awaiting a date for my fifth and possibly sixth surgeries!
Don’t get me wrong, I don’t regret what happened. I’d had years of flare ups and illness but I don’t think I really recognised that this was just another chapter in my health story, rather than the end of it.
There are so many wonderful things that have happened in the past three years, things that would have been difficult, if not impossible with my ulcerative colitis. I travelled to Vietnam and Australia, I renewed my wedding vows and I started this blog!
This place has been such a blessing, it has been my diary, a cathartic release to spew out all my feelings. It’s also let me down a new career path, three years ago I’d have never believed I’d be on TV and radio or that I’d be featured in nearly every major newspaper! I wouldn’t have thought I’d be sitting on the This Morning couch with Holly and Phil, be going to parliament, be writing for a newspaper or be in US People magazine!!
More than that though, I wouldn’t have believed that id have the strength to help others. To inspire and support people all over the world. I wouldn’t have thought I’d be meeting wonderful new people who courageously share their stories with me and make me carry on writing.
Three years ago today, as I lay in the high dependency unit, tubes everywhere, I was at my lowest. I was broken, helpless and my soul hurt. I felt like my body was a failure, that I had become a burden to everyone around me. I felt as though the world would be better off without me.
This blog helped me through the toughest times of my life and I want to thank every single one of you for reading, commenting and supporting me. I’ve had well over 2.5 MILLION views now, I still can’t believe that number when I say it out loud! And every single reader has a place in my heart.
Thank you for following my journey for the past three years, I hope you’ll continue to be by my side for the next three.
Love Sam xxx
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.
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.
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.
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.
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.
I met Nicola at the recent Get Your Belly Out Ball who is the owner of Vanilla Blush and we got talking about the brilliant work she has done in the field of Ostomy Underwear. As an ostomate herself, Nicola has created a range of beautiful underwear specifically designed for people with an ostomy bag. Nicola kindly sent me some of her products to try and I am so impressed!
There are ranges for both men and women and they go from hernia support wear to swimwear to beautiful but practical underwear. They look like any other high waisted underwear from the outside but have an internal pouch that houses your ostomy bag, keeping it off your skin and close to your body.
I tried them out and I can’t believe how great they feel, I have never worn specific ostomy underwear before, always choosing everyday pants but now I have tried these, I am a bit in love. I think originally I felt that they were trying to hide the ostomy bag away and I wasn’t comfortable with that, but having tried them, they are so practical and cleverly designed and make me feel awesome.
What I love most about them is they are not medical, they don’t look any different to beautiful lingerie, the website doesn’t scream “SICK PANTS FOR SALE HERE!” Buying and wearing these knickers just felt like a great experience. I don’t want reminders of my illness, especially not when Im trying to wear something to feel good and Vanilla Blush get it so right.
Going from a UK size 6-8 up to a 20-22, there is a good range of sizes so most people should be able to find something for them.
I wore the hernia support vest and I felt really held in and like my hernia was well supported, and it looks like any other vest. This allowed me to do some gardening and housework, something I had been struggling with before. (Although after taking this photo, I realised I had it on backwards!!!)
I love that all the models on the website are real people with real ostomies.
I also tried the other knickers and just fell in love with them, I felt in control, beautiful and awesome. My sister saw them and wanted a pair for herself and she doesn’t have an ostomy! They feel very well made, as good as any high end underwear I have bought before and wash well. I have to admit that I put them through the washing machine before reading the website which advices hand washing, but they did survive a 40 degree wash with no ill effects.
Warning… If you are my mother or child or don’t want to read about sex, step away from this post now!
Still here? OK, so Vanilla Blush do some crotchless knickers. I loathe to use that term as it sounds so tacky and creepy. The underwear is the same shape as the other pants but has a split gusset that looks like normal knickers when together or when separated it is open. I wasn’t sure about these, we got them out and had a giggle and talked about the connotations of crotchless knickers. Then I tried them on out of curiosity more than anything.
As you know, I don’t like talking about my sex life on here, but I have to say, they are a very clever design. It’s not that I want to hide my ostomy bag or that it shouldn’t be seen, it’s more that the presence of it can sometimes be off putting, the rustle of it is a subtle reminder that it is there and so these pants mean you can be intimate whilst your bag is safely in the pouch and flat to your body. The pants looked classy and like beautiful lingerie, it didn’t feel seedy or weird but just that someone had actually thought about the sex life of people with an ostomy, which is something hospitals and doctors simply aren’t doing.
OK, enough sexy talk!
- UNDERWEAR: 6 pairs per-year (these have an internal Stoma-support pocket).
- SUPPORTWEAR: 3 items per-year (Level 2/3 flexible Hernia Prevention Support inbuilt).
If buying yourself, prices for underwear go from £13 -£20. Not cheap I know, but they are of such a great quality and certainly compare positively to more expensive lingerie, I think it is well worth the money and will certainly be buying more.
Disclaimer: I was not paid for this review, but I was sent the underwear for free from Vanilla Blush. From time to time, I work with companies who sponsor me in some way, either though payment or products. I will only work with companies that I believe have something positive to offer my lovely readers.
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.
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.