2013 – what a year!

This year has been filled with highs and lows. I got sick, lived in an amazing house, held our Cleastonbury festival, laughed a lot, cried quite a bit, had my colon removed, got an ileostomy bag, had some big disappointments but also some fantastic highs, I have visited Vietnam and I’m ending the year in Sydney with my big sis!

I’ve faced my biggest challenges this year, two weeks in hospital, IV steroids, moon face, mood swings, pain, fear and the ‘decision’ – I had a subtotal colectomy with an end ileostomy and spent the last four months living with an ileostomy bag.

sam cleasby ulcerative colitis ibd ileostomy surgery

It has been one of the hardest years of my life, there were times when I felt so low, that life was unfair and that I didnt want to have to deal with all this.  But through the support of my friends and family I got through it.  I founded this blog as a cathartic way to express my feelings while I was on this rollercoaster ride and was amazed that so many of you read it.  Over 30,000 views since I started!!!!

ulcerative colitis surgery ibd ileostomy hospital

As tough as this year has been, I have come through stronger and with a sense of what I want from life.  Im more adventurous and open to change, I want to make the most of every second, Im braver than I thought and stronger than I seem.

colectomy scar ulcerative colitis

I am covered in battle scars that remind me of what I have been through, Im not ashamed of them nor do I feel the need to hide them or cover them up.  I wear my ileostomy bag with pride as it is a symbol of wellness for me.  Before my operation my life was ruled by the toilet, my quality of life was suffering and I just couldnt see a happy future.  Now my bag lets me lead a better life.

stoma ileostomy photo shoot woman beauty ibd surgery ostomy

Im travelling at the moment, I am been to Vietnam and Im in Australia now.  This is something I couldnt dream of doing before as the fear of having a flare up would have ruined it all.  In the last 3 weeks I have been swimming, snorkelling, rode a bicycle around a Vietnamese island, travelled over 12,000 miles, hiked through Aussie bush and LIVED.

vietnam bicycle ulcerative colitis ibd warrior ileostomy ostomy stoma adventure life travel

2013 has made me realise that who you are is not what your life throws at you, but how you choose to deal with it.

ibd warrior inner strength confidence ostomy ileostomy bag

woman with stoma ileostomy ostomy stoma images

woman with stoma ileostomy ostomy stoma images

sunbathing with an ileostomy stoma ostomy travel holidays bikini swimwear

20131231-100451.jpg

20131231-100541.jpg

20131231-100559.jpg

20131231-100655.jpg

20131231-100942.jpg

So that was 2013, lets see what 2014 brings!

Happy New Year to you all!

Love Sam xx

Sydney!!

I have been in Sydney for just over a week now and all is going well. Travelling with an ileostomy bag is a lot easier than travelling during a flare up of ulcerative colitis.

I’ve been swimming, snorkeling and dealt with 40 degree heat and my bag has been just fine! I was nervous about how sea water and high temperatures would affect the bag but there have been no problems so far.

I’m kind of feeling the pressure to be completely on top of everything as I don’t want my stoma to ruin our trip.

There are times where the heat gets to me and my skin is sore, I feel tired and dehydrated. My stomach gets quite swollen and I have had two occasions where I have felt like there was slight blockages. (For the record I no longer eat mushrooms, oranges and spring onions sliced lengthways!)

Today my daughter made me feel great. She said “I’d vote for you to be the best person ever because you only had a big operation a little while ago and you do everything with us, mum I think you’re really brave because you just do it all and you have a bag on your belly!” I gave her a massive hug and kiss, it was really lovely to hear her say something so sweet!!!

There has only been one time where it got a bit much, I had a blockage and felt quite poorly – I had to have an hour laying down till it passed. I felt bad for this but I needed a little time.

I’m determined that the kids will have an amazing time and that my stoma won’t stop us doing anything.

We are having such a great time, I can’t believe how beautiful it is here. We are loving Australia!

Clothes haven’t been too much of a worry though occasionally I’ve struggled with getting longer vests to wear with shorts. With swim wear I decided against a special ostomy swimming costume as I couldn’t find one i liked, so I wear my normal swim wear. Either costume or bikini!

Wearing the bikini means I do get the odd stare, mainly from other children which I accept with a smile. It’s normal for them to be curious and want to look and hopefully the more they see things like this the more normal or becomes for other people. I have had one man openly stare with a disgusted look on his face, I thought he was going to fall over he was so enthralled with my bag!! At first I felt embarrassed and a bit upset but that lasted only a second before I felt annoyed. Really adults should know better, but I won’t let a few nasty stares put me off wearing my bag proudly!!

Here’s a few photos of our time in Australia so far.

20131228-213924.jpg

20131228-213941.jpg

20131228-214019.jpg

20131228-214042.jpg

20131228-214057.jpg

20131228-214129.jpg

20131228-214139.jpg

20131228-214218.jpg

20131228-214307.jpg

20131228-214323.jpg

20131228-214357.jpg

20131228-214428.jpg

Love Sam xxx

Sunbathing…

Three months ago I was in HDU after having my colectomy. Today I’m sunbathing on an Aussie beach with my ileostomy bag proudly on show. Screw you Ulcerative Colitis…

20131224-163100.jpg

Love Sam xxx

Vietnam with an ileostomy

Cin ciao from Vietnam!!! Hello!!

After my surgery in 3rd September this year to remove my colon and create an ileostomy I was nervous about our planned trip to Vietnam and Australia but here I am and all is going well!

The flight was fine, I avoided the (free) alcohol which is always a bit depressing as I knew that dehydration was a possibility that could affect me badly. I took an Imodium in the morning and took two large bottles of water onto the flight with me to make sure I had easy access to water.

It was an 11 hour flight so I had to empty my bag a few times during that time. I figured out which was the slightly larger loo and made sure I went for that toilet. I packed most of my supplies in my hand luggage but made sure I had a small bag with a set of everything I needed so I didn’t have to take my big bag.

One tip is to put loo roll down the pan before emptying your bag as otherwise the output can be difficult to flush. I also packed a mini spray of ostomy scent and some anti bacterial hand gel which made life a little easier.

Despite drinking tons I did end up feeling quite dehydrated so I drank a couple of cokes and had some salty snacks. I did have some diaralytes packed too to replace the salts and fluids lost.

All in all the flight was ok, I was worried but it all went fine. And no, my bag didn’t swell up with air when I was flying!!!

So onto Vietnam – it is an amazing place!!! I have been blogging on our family travel blog so if you want to read more on our trip take a look here

We are staying in Ho Chi Minh City and we are having a fantastic time, my bag is not stopping me doing anything though I am aware of it and conscious of looking after myself.

20131219-101748.jpg

20131219-101916.jpg

I have been on boat trips, walked all over the city and even cycled around an island!

20131219-102128.jpg

20131219-102159.jpg

The heat and humidity has caused my stoma to swell, which in turn has caused some soreness and bleeding of my stoma. I have increased the size of the hole in the flange to compensate for this.

I’ve also had some soreness of my skin around my stoma due to the glue on the flange and general sweating in the 32 degree plus heat!!

20131219-102506.jpg

20131219-102542.jpg

Regarding clothes I found shorts that fitted comfortably under my ileostomy bag before we came and I’m wearing those with long vests or tshirts. I have occasionally felt a little self conscious about my bag. It was peeking from under my top as I got out of a boat and I saw a group of men staring but it’s been fine.

20131219-102941.jpg

The food in Vietnam is amazing and I have enjoyed eating everything I have wanted. I’m aware of general cleanliness and only drank bottled water, not eaten street food and used anti bac gel before eating.

20131219-103158.jpg

20131219-103237.jpg

20131219-103249.jpg

20131219-103317.jpg

There have been a couple of times where I have been in some discomfort due to my stoma being swollen or my skin feeling sore but I was adamant that it wasn’t going to ruin our trip. It is really important to me that I live a normal life and I don’t want my bag to negatively affect my experiences.

This has been an amazing trip, I have had the time of my life and I’m glad I didn’t let the surgery put me off coming. It has meant thinking some things through and making my health a priority but it really hasn’t affected our holiday.

Vietnam is crazy but beautiful – it is one of the most fantastic places I have ever visited and I’d recommend it to anyone!

This morning I have woken with some stomach cramps and diarrhoea – something I ate yesterday hasn’t agreed with me. So I’ve taken Imodium and I’m drinking plenty. This could happen bag or no bag so I won’t let it get me down!!

I’ll keep an eye on things and make sure I stay hydrated, I’ll take some diaralyte and enjoy our last day in Vietnam!!

Tonight we fly to Australia, I’ll update next week!

Anyone with an ostomy, I really hope this inspires you to know that your stoma and bag are no reason to stop you living life to the full – your ostomy is there because it saved your life – so live it and live it well.

Gam hon!!! Thank you!

Love Sam xx

If only for a second…

The Mimi Foundation supports the health and well being of cancer patients.  This video shows 20 cancer patients who participated in a unique makeover experience.

mimi foundation

They were invited to a studio. Their hair and makeup were completely redone.

During the transformation, they were asked to keep their eyes shut.
A photographer then immortalized the moment they opened their eyes.

This discovery allowed them to forget their illness, IF ONLY FOR A SECOND.

 

So beautiful xxx

Be more Beyonce

I came across this quote from Kathleen Hanna that was just too good not to share.

Perhaps we all need to care less about what others think, especially others who are just randoms off of the internet?  Perhaps we all need to be more Beyonce…

beyonce sasha fierce

“Beyoncé isn’t Beyoncé because she reads comments on the Internet. Beyoncé is in Ibiza, wearing a stomach necklace, walking hand in hand with her hot boyfriend. She’s going on the yacht & having a mimosa. She’s not reading shitty comments about herself on the Internet, & we shouldn’t either. I just think, Would Beyoncé be reading this? No, she would just delete it or somebody would delete it for her. What I really need to do is close the computer & then talk back to that voice & say, Fuck you. I don’t give a shit what you think. I’m Beyoncé. I’m going to Ibiza with Jay-Z now, fuck off. Being criticized is part of the job, but seeking it out isn’t. That’s our piece to let go.”

beyonce single ladies

 

 

Love Sam xx

Life with Ulcerative Colitis

This is an article I was asked to write for Dexterous Diva as a guest post for her fantastic blog about living with a chronic illness, Jo who runs the site has endometriosis and the blog is really inspirational.  I was worried at first about writing about my experiences, concerned about how it would come across but once I started writing, it flowed pretty well.  I realised I was comfortable with writing about this disease because it was important to me.

It was written last year so obviously some parts regarding my personal progress with the disease are out of date, but still, enjoy!  It’s good for me to read it back and remember how awful my flare ups were and that now, even though living with an ileostomy bag has its difficulties, life is so much better than when I was ill.

If you would like to know more about my commercial writing and how to get me and all my awesome on your website, newspaper or magazine, then get in touch through my PR friendly page.

sam cleasby ulcerative colitis ibd ileostomy surgery

Ulcerative colitis is a chronic disease of the colon causing inflammation and ulceration of the lining due to an abnormal response by the body’s immune system. It’s an embarrassing illness that causes bleeding, diarrhoea and pain and massive tiredness.

I am 30 and have had this disease for 9 years now, I have been hospitalized several times and have to take daily medication. Ulcerative colitis comes and goes in waves, you can go weeks, months or even years between flare ups though I have been suffering with an ongoing flare for the last 2 years.

To look at me you would probably think I was a happy go lucky, slightly mad woman with flame red hair usually seen
guffawing my way through life. But inside I’m usually struggling. I’m usually feeling terrified I will lose control of my bowels, I’m sometimes uncomfortable with people coming too close in case I smell (I’m assured by my husband and friends that I don’t) Sometimes I’m smiling on the outside but inside I’m so fed up with dealing with this illness that I just wish I could hide away from life like a hermit in a cave (a cave with a flushable toilet!)

I spent my early twenties having kids, I have three children, now aged 11, 9 and 7. I was a stay at home mum and so dealing with my illness though difficult at times, was made easier by the fact that I was at home most of the time and could stay near a loo if I was having a flare up.

sam cleasby ulcerative colitis ibd ileostomy surgery

I then trained as a masseuse and a doula. I got a job as a breastfeeding support worker and loved it. I felt I had found my
calling in life. I loved being a support to women through their pregnancies, during labour, birth and in the first few months of their babies life. Then 6 months into my job I started with a bad flare up. I was bleeding very heavily and needing the toilet 20+ times a day. My job was to visit mums in their homes or at a children’s centre and the colitis was making this extremely difficult. I spoke to my manager who wasn’t particularly helpful and suggested I planned my days better. She didn’t understand that I couldn’t plan when I needed the toilet and that was the problem.

I was signed off work for four weeks and ended up in hospital again, during my stay and due to my shoddy immune system I caught flu and was bed ridden for weeks. It was at this time that I decided to hand in my notice. The stress of work and the thought of doing my job poorly and possibly letting people down was just too much.

I became very low and felt useless, worthless and broken.

Then my husband decided on a change in career, he had been an amateur photographer for years and decided he wanted to go full time. A year on and business was booming. Slowly, he started asking me to help him out and after a while I was taking on a larger role within the business and my self esteem was building up.

Now I run our blog, website and social media, I take care of marketing, editing and more. I’m learning to be a photographer and I’m loving life a little more.

ulcerative-colitis

Working for myself in our family business means I can work when I am well and rest when I am not. It means I don’t have to deal with office toilets and colleagues not understanding. I honestly don’t see how I could hold down a job working for someone else. When my flares are bad and I can spend 3 – 4 hours a night on the toilet and then cant wake up in the morning. I can go to the toilet up to 30 times a day. I can be so exhausted that I cant keep my eyes open. My joints ache horrendously and I have to take strong painkillers that make me dozy and uncoordinated. Hardly an ideal candidate for a job eh? But you know what? I’m a hard worker, I’m fiercely loyal and a kind, caring person. I’m always learning, a good listener and I love my job.

I have been very honest here, perhaps more honest than I am with friends and family because it’s hard to talk about. Its hard to admit that at times I hate myself, that I’m jealous of “normal” people, that I despise my stupid, broken body that needs drugs just to behave semi normally. But I think it is so important to get my message out because other times I am really proud of myself that despite this illness I have three beautiful children, I co run a successful business, I have an amazing husband and some wonderful friends.

sam cleasby ulcerative colitis ibd ileostomy surgery

I want to take time to mention my husband because his support makes my life a million times easier. He is so understanding, he loves me unconditionally, even when sometimes I don’t feel like I can love myself. He looks after me when I am ill and cheers me on when I’m well. He comes to doctors appointments when I’m just not strong enough to deal with it alone. He is always there to love me and hug me whether times are good or bad.

In the beginning I kept a lot from him, I was embarrassed and worried that he would be put off me, stop fancying me or even not want to be with me any more. Then I let him in. I explained what I was feeling like, physically and emotionally. I told him about it all, even the most embarrassing parts. And I found out that the old saying ‘a problem shared is a problem halved’ is so when I was asked to write this blog post I was unsure. Part of me wants to hide the illness and low self esteem away. I worry what people will think of me, that in some way my illness may look bad on the business. But after 9 years of having ulcerative colitis I’m done with being ashamed, I have done nothing wrong and I have an illness. Yes, it’s an embarrassing illness but if we never talked about these things, how can we learn to understand them?

Love Sam xx

Haircut time

I’ve been writing about my hair loss and how it’s been bothering me. Yesterday I went to see the lovely Nikki from Kojo & Lee in Sheffield to sort out my mop.

We talked about alopecia and discussed some hairstyles I had seen around the web and it turns out the styles I was looking at wouldn’t have helped with me feeling my hair is thin.

I was considering a layered bob or perhaps a change in colour. But as I’m off travelling for 6 weeks we decided it might be best to just go for a really good trim and cutting my fringe back in and now I love my hair again!!

20131206-134204.jpg

My hair was super thick before and so it knocked my confidence as to me it felt so thin. But a good cut has made it feel shiny, healthy and in good condition.

I’d recommend Kojo&Lee wholeheartedly! Find her on Facebook.

Love Sam xx

Traveling with an Ostomy

In less than two weeks I am setting off with my husband and kids on an awesome adventure.  We are going to Vietnam and Australia for six weeks and I can’t wait!!

world adventure

I had a subtotal colectomy and end ileostomy on 3rd September this year and so it was a concern of how I would deal with travelling with an ostomy but after research and getting organised I am feeling confident that everything will be fine.  I thought Id do a bit of a guide to traveling with an ileostomy to get all the advice in one place for other people.

Insurance

Our trip was already booked when I ended up having the surgery but I hadn’t yet sorted our travel insurance.  When I looked a couple of weeks after the op I had a shock to find many companies wouldn’t cover me at all and the ones that would were charging around £900-1000.  After picking my jaw off the floor I started looking into it and found that the high cost was mainly due to it being less that six weeks since my op.  I looked again 7 weeks post op and found an insurance to cover me and the family for £185.00 from Holiday Extras.

Insurance was so important to me, as much as I am feeling great at the minute, I needed to know that should anything happen with my stoma I could get medical help easily and it wouldn’t end up bankrupting me!

You an find a list of recommended travel insurers on the IA Support website.

Supplies

I spoke to my stoma nurse about what I needed to do for supplies and she let me know that I needed to take one and a half to two times as many supplies as I would usually need.  Im travelling for 6 weeks so Im taking 90 ileostomy bags plus wipes, disposal bags, barrier wipes and all the other gubbins!

My delivery company and prescription service were absolutely fine with me ordering extra supplies once I had explained my trip.  Its worth my peace of mind to take extra supplies so I know I have plenty if needed.  The majority is being packed in my hand luggage with a supply in my checked luggage so I know that should all my checked luggage get lost I still have plenty of bags with me.

Please remember that scissors and aerosol sprays are not allowed in hand luggage so pre cut your flanges so you have no issues there.  Also any liquids need to be under 100ml and stored in a clear sealed bag to go through customs.

travel with ostomy stone ileostomy

I also packed stickers to cover vents for bathing/swimming, waterproof tape for added security when swimming, a spare belt, stoma paste and stoma donuts.  A box each of Dioralyte and Immodium incase of dodgy stomach problems whilst we are away.  I packed everything into a carry bag that will fit inside my carry on luggage so if security want to look through, everything is together.

stoma travel

Im also packing my usual ‘handbag kit’ of one pouch, a few wipes and a disposal bag so I don’t have to haul the large bag to the aeroplane toilet.  Plus a spare pair of knickers and some jogging bottoms in case of all out bag leakage!

Travel Certificate

You can get a travel certificate from your stoma nurse or from the IA Support by e-mail gro.t1502896264roppu1502896264sai@o1502896264fni1502896264, or telephone IA free on 0800 0184 724.   The certificate says that the bearer has a medical condition that would require them to have a private room if searched and explaining the medical equipment being carried.  It is there to give the confidence to the holder when travelling and are able to explain their condition but still keeping it discreet.

ileostomy travel certificate

ileostomy travel certificate

Food and drink

When you have an ileostomy you are always at risk of dehydration, add in hot weather, sweating, flying and different food and drinks and it can be a real problem when travelling.

Sports drinks and rehydration solutions (available from pharmacies) will help replace salts lost through diarrhoea and sweating. The impact of tummy upsets caused by unfamiliar foods and foreign water supplies can be exaggerated for people with stomas so it is worth being extra careful with regards to food hygiene and to drink bottled water (remember that ice in drinks will be local tap water!)

As we are going long haul my plan is to have a few days before on a very light and bland diet, plenty of fluids and some Immodium before the flight.

During air travel, you may find that there is increased gas in your pouch for the duration of the flight. To prevent additional gas formation, avoid drinking fizzy drinks or beer during the flight.

Confidence

The biggest thing to take with you on your travels is confidence.  I admit to having nerves about being away from my safe home and dealing with my stoma and ileostomy bag, but then I remember that without the bag I could be in the middle of an Ulcerative Colitis flare up, I could be in pain, exhausted and going to the toilet 20 times a day.  I can’t even imagine how Id deal with four 12 hour flights with a flare up, the thought of that brings me out in a cold sweat!  So whatever nerves I have about traveling with an ostomy, it HAS to be easier that traveling with a flare up!

I am nervous about going on the beach and people reacting negatively to my bag, Im scared about leaking on the plane or during a day out.  I am worried about ruining a holiday of a lifetime because of my stoma.

But all these things are my mind working over time.  In reality if ANY of these things were to happen I will deal with it! If someone was mean about my bag Im fairly sure I could laugh it off and if not my husband would shout at them.  A lot.  If I have a leak I am now practiced in dealing with it as is Timm, Im going away with my best mate and he makes EVERYTHING easier!  So I am going to put all those worries out of my mind and enjoy the trip of a lifetime!

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I hope this has helped any ostomates who are looking to travel, just remember we have faced tougher times than this and come out of it stronger and tougher… Now is the time to enjoy some relaxation and leisure during your holiday! Good luck!

We will be updating a family travel blog whilst we are away so you can keep up with me here.
 I will try to pop the odd post on So Bad Ass and will also be on Facebook and Twitter – so keep in touch xxx