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Ulcerative Colitis – a gift?

10th February 2014/16 Comments/in Blog/by sam

Anyone who has seen or heard me writhing in agony, weeping with embarrassment or slumping in an exhausted heap may read this post with a wry smile on their face, but I wanted to write about how despite all its tough times, Ulcerative Colitis has also been a gift.

When I was first diagnosed with Ulcerative Colitis back in 2003 I went through a whole grieving process; Denial, Anger, Bargaining, Depression and finally Acceptance. Once you have accepted the disease and the path it will lead you down, you realise that without it, you wouldn’t be the person you are today. You realise that this disease has changed you, and on the whole, it has changed you for the better, you may be physically weaker, but the strength you have to find to deal with a chronic illness makes you a fuller, kinder and more open person.

Now don’t get me wrong, I am not trying to romanticise Ulcerative Colitis or Crohns, it is a heavy cross to bear, there have been many times that I have cried till I had no tears left, that I took my anger out on those around me and that I shouted the immortal words of “WHY ME?! ITS NOT FAIR!!!!!”

But along with the hard times, the medication, the pain, the hospitalisation, the surgeries and the emotional war that rages within you during a flare up, having Ulcerative Colitis has also given me so much. It has shown me that I am braver than I think I am, tough as an ox and that I have it in me to inspire others.

When I was a mother of three by the time I was 23 with no qualifications and then given what at the time felt like a life sentence of blood and shit, I never thought I would be at a point where my words were being read by thousands, that I would receive messages of support and cries for help from all over the world. I never believed I would be asked to speak at International Women’s Day, little old me? Im just a girl from Sheffield who doesn’t know what she wants to be when she grows up!

Ulcerative Colitis has lead me down a path of meeting people like me, who deal with this disease every day, who I can talk about the things that would turn most peoples stomachs and just make us laugh.

It has shown me that I am surrounded by the love and support of my family and friends. When I was in hospital for surgery last year and in the months since, I have been completely overwhelmed by the compassion, kindness, humour, love and help of those around me.

It has made sure Im damn straight on the fact that life is precious. You never know what you will face and my Ulcerative Colitis reminds me that you are here once and not for very long. Live hard, live with love and follow your dreams. Don’t waste time on the shit that means nothing, concentrate on what you want and how you can get there. Hold your loved ones close and enjoy life.

It has made me take stock of what is important to me. My husband, my children, my family, my friends, my self esteem, my morals. It made me look at where I wanted to be and made me make it happen. My husband and I sold up and moved to a big rented mill in the countryside to expand our photography business, The Picture Foundry, it was scary (still is!!) and hard work but making the move has improved our lives and brought us closer together, our business is thriving and moving forward all the time. Ulcerative Colitis really moulded me into a person who is brave enough to make the changes I want in life.

It has stopped me being afraid. Or at least made me work on my fears. After having major surgery to have your bowel removed it makes you feel like you have faced the toughest times and so those things that frightened you before are no where NEAR as big or bad as the disease you live with.

It has taught me to respect and love my body. Its the only one I have and despite its faults I need to look after it. After all it has been through I think it is pretty amazing! Yes, it has a stoma and scars but I have learnt to embrace the changes and not be embarrassed of them. Through weight gain from steroids, epic diarrhoea, being pumped full of drugs and being cut open, my body has stayed resilient and kept me going through it all. I love my battered and scarred body.

Finally Ulcerative Colitis gave me the opportunity to slow down and release control. When I am ill, when I had surgery, I needed to release the reins and allow myself to be weak, to be cared for and to let others in. It made me realise that my husband is amazing, he cares for me in such a tender, honest and funny way. He never judges, never wavers in his love or attraction for me and makes everything better.

Its good to be a strong person, to have self esteem and confidence, but now and then it is good to relax, to be cared for and treasured. Im lucky to have such amazing people around me.

Im lucky to have had Ulcerative Colitis.

Sam x

A to Z of IBD

5th February 2014/19 Comments/in Blog/by sam

When I talk about IBD Im often faced with blank stares and so here is my A-Z guide to Inflammatory Bowel Disease… Please remember that I am not a trained medical person and these are my opinions only. Always speak to your GP, doctor or nurse about any worries or concerns you have. xx

A is for Ass – IBD covers both Ulcerative Colitis and Crohns and is a disease of the digestive system, Ulcerative Colitis is a disease of the large intestine whilst Crohns affects anywhere from the mouth to the anus. They cause diarrhoea and bleeding and so sufferers have to deal a lot with their ass (or arse if you’re from the UK) – My site name came from my nearest and dearest regularly asking me ‘how’s the ass?’ and my reply being ‘I’m so bad ass right now’

B is for Bowels – Your bowels or intestine go from your stomach to the anus and consist of the small and large intestine, the small intestine begins at the duodenum, which receives food from the stomach, the duodenum transmits food to the ileum. The large intestine consists of the colon and rectum. The colon connects to the rectum, and finally the anus. IBD can affect all the parts of the bowel and causes pain, cramps, bloody diarrhoea.

C is for Colectomy – A colectomy is the name of the surgery that I had in 2013 and consists of the surgical resection of any part of the large intestine. I had a sub total colectomy which means they removed all of my colon apart from the rectum.

C is also for Colostomy – Most people have heard of a colostomy, which is a surgical procedure in which a stoma is formed by drawing the healthy end of the large intestine or colon through an incision in the abdomen and suturing it into place. This allows waste to leave the body and be collected in a bag.

D is for Diarrhoea – not the nicest thing to talk about but one of the biggest symptoms of IBD. Imagine that time you got horrific food poisoning or the worst stomach bug ever, you know that one time when you couldn’t control your bowels and it felt like an alien was about to burst forth from your stomach… Remember that? Yeah, thats what IBD diarrhoea is like.

E is for Endoscopy – Endoscopy plays a key role in the diagnosis, management, and surveillance of IBD. Because there is no single test that can diagnose IBD, endoscopy is useful in establishing the diagnosis, distinguishing Crohn’s disease from ulcerative colitis, defining the extent of the inflammation. In established IBD, endoscopy helps define the extent and severity of the disease which aids medical and surgical decisions.

Colonoscopies and sigmoidoscopies are commonplace, they are undignified, embarrassing and uncomfortable but as someone who has had so many of these procedures I can tell you that they’re not as bad as you may fear. Sedation is offered and in my opinion should always be taken! I also remind myself that the nurses and doctors do this everyday and there is nothing they haven’t seen before.

F is for Flare Up – people with IBD are not always sick constantly, they have periods of remission and illness. These periods of being unwell are referred to as a Flare Up. Flare ups can vary in strength and length of time and can’t be predicted.

G is for Gastroenterology – Gastroenterology is the specialty of diagnosing and treating diseases of the gastrointestinal tract and so these are the fellas who deal with us IBDers. If you have IBD you will get to know your doctors and nurses very quickly. If you do not feel that you are getting the right treatment, don’t be afraid to speak up. I was under one team for years before I decided to change to another local hospital and a new team. It was easy to do, all through my GP and I am so much happier with my treatment since then.

H is for Hospital – IBD is managed by a consultant and team of doctors meaning that sufferers spend a good chunk of their time attending hospital appointments. Severe flare ups can require hospitalisation for more aggressive treatments and medication. If the disease gets to the point of requiring surgery then hospital unfortunately can feel like your second home.

I is for IBS – IBD is not the same as IBS. Not at all. And it kinda pisses off IBD folk when people say “ohhh yeah my sister/brother/uncle/neighbour has IBS!!”

Irritable bowel syndrome (IBS) is classified as a functional gastrointestinal disorder, which means there is some type of disturbance in bowel function. It is not a disease, but rather a syndrome. IBS does not produce the destructive inflammation found in IBD, so in many respects it is a less serious condition. It doesn’t result in permanent harm to the intestines, intestinal bleeding, or the harmful complications often occurring with IBD. People with IBS are not at higher risk for colon cancer, nor are they more likely to develop IBD or other gastrointestinal diseases. IBS seldom requires hospitalization, and treatment does not usually involve surgery or powerful medications, such as steroids or immunosuppressives. This information is from the CCFA.

Im not belittling IBS, I know it causes great distress to those who suffer from it but it is very different to IBD and the two shouldn’t be confused.

I is also for Ileostomy – An ileostomy is a surgical opening constructed by bringing the end or loop of small intestine out onto the surface of the skin. Intestinal waste (shit) passes out of the ileostomy and is collected in an external bag that sticks to the skin.

J is for J Pouch – A J Pouch or Ileoanal Reservoir is a surgical treatment option for IBD patients who need to have their large intestine removed. It is an internal pouch formed of small intestine. This pouch provides a storage place for stool in the absence of the large intestine. Several times a day, stool is passed through the anus. This is the next step for me and will mean I no longer have a stoma or ileostomy.

K is for Keep Calm and Carry On – because in reality, it is the only thing we can do.

L is for Laughter – Now I know that this disease is serious business, it affects every part of your life and the pain and embarrassment can just feel too much so having L for Laughter may seem like an odd one. But I really believe that laughter is the key to getting through the bad times. The fact is that poo, bums and farting are a bit embarrassing for most of us, but they are also funny. Seriously, toilet humour is hilarious and the quicker you can laugh and make a joke of something, the quicker it feels like less of a big deal.

M is for Medication – there are a variety of medications used to treat IBD, my experience has only been of Ulcerative Colitis meds but most have side effects and some people find the treatment as unbearable as the disease itself. I believe that its really important to educate yourself on the medications and treatments available to you along with the benefits and side effects. Take control of your disease and make sure the treatment path is the right one for you.

If your symptoms are mild you may not require specific treatment as mild ulcerative colitis often clears up within a few days.

Moderate ulcerative colitis is often treated using a medication called aminosalicylates. If this is not effective, alternatives such as corticosteroids (steroid medication) and immunosuppressants (medications that suppress the workings of your immune system) can be used.

Once your symptoms are under control it may be recommended you continue to take aminosalicylates as these can help prevent further flare-ups; this is known as maintenance therapy.

If you experience a severe flare-up you may need to be admitted to hospital where you can be given injections of corticosteroids or immunosuppressants.

There is also a relatively new type of medication called infliximab that can be used to treat severe ulcerative colitis where corticosteroids cannot be used for medical reasons.

This information comes from the NHS website.

N is for the NHS – Only since my surgery have I realised just how lucky we are in the UK to have the NHS. Though I had some difficulties (I changed hospitals and consultant once and had a bad nurse experience) I am a big fan of the NHS and feel so lucky to have had the level of care, treatment and support that I have received. When I read about IBD patients in the US I am appalled at how their system works and realise the value of our countries medical care.

I can’t thank my doctors and nurses enough for the amazing care Ive had in the last year, they have truly saved my life and Im eternally grateful.

O is for Ostomy – The terms ostomy and stoma are general descriptive terms that are often used interchangeably though they have different meanings. An ostomy refers to the surgically created opening in the body for the discharge of body wastes. A stoma is the actual end of the ureter or small or large bowel that can be seen protruding through the abdominal wall.

P is for Pain – Pain is a common side effect of IBD, abdominal cramps and pain as well as a literal pain in your ass. Living with pain is really difficult and has such a negative impact on the lives of those with IBD. It can become difficult to manage as sufferers should not take anti inflammatory drugs or Nonsteroidal anti-inflammatory drugs, usually abbreviated to NSAIDs. Other pain relief can also have an affect on the bowels and some are really addictive and should only be used short term.

P is also for Poo – in a post like this, how could it not be??

Q is for Quality of Life – This is a biggy for me, one of the main reasons that I wanted to go ahead with my colectomy surgery was because Ulcerative Colitis was really affecting my quality of life. That is an understatement to be honest, my life with IBD was literally shit, it made me miserable. I was exhausted both physically and mentally, I struggled to work, I dislike going places where I wasn’t near a toilet, my body was being wrecked by meds, I had little sex life, I was moody, angry with life and just felt hard done to.

I was pissed off that I had to live like that, it seemed so unfair. Since my operation my quality of life has gone through the roof, though it is in no way an easy option it was definitely the right option for me.

R is for Rectum – Let me tell you about Phantom Rectums… Phantom rectum is a complication that can affect people with ileostomies. The condition is similar to a “phantom limb”, where people who have had a limb amputated feel that it is still there. People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

Weird, annoying but hilarious to tell people about!

S is for Support – Support is key to surviving IBD, from medical teams, friends, family and IBD groups. It really is a shit disease to have to live with, and due to its taboo nature sufferers not only have to deal with the physical problems but also with the huge emotional toll it takes on your life. Embarrassment, shame, humiliation, anger and a deep sadness are all emotions that Im at war with every day and it is only with the support of my husband, family and friends that I get though it. My blog is a coping mechanism for me, if I can write it down and feel that Im helping someone else then it feels that the crap I deal with has a purpose.

Im also a member of the IA Support (Ileostomy and Internal pouch support) and I visit the Colitis and Crohns site regularly. Whoever you choose to talk to, just talk to someone. I guarantee you that it helps, I get many emails and messages through this site and always try to reply to and support anyone that I can. xxx

T is for Toilets – IBD sufferers are well acquainted with not only their own toilet but those of all friends, family and all public toilets in their surrounding area. I can’t even imagine how much time I have spent on the pot in the last ten years, considering that during flare ups I could be going to the loo 20 + times a day.

As a side note, you can request from Radar a key to use disabled toilets around the UK as when you need to go, you need to GO… Having washing facilities by you is a life saver when you have IBD. So next time you see someone who doesn’t look ‘disabled enough’ using the facilities, wind your neck in..

U is for Ulcerative Colitis – I was diagnosed with Ulcerative Colitis in 2003, it was a life changing moment and I struggled to deal with the idea of having an illness for a while. UC is inflammation and ulceration of the large intestine or colon, it presents itself with bleeding, diarrhoea and pain.

V is for Vegan, or Vegetarian or the raw diet, or the beige diet – There are a million and one people across the internet who claim to have the ‘cure’ for IBD through diet and pills. The fact is that if you are suffering from IBD you should NEVER start any massive change to your diet without speaking to a doctor first. Doctors do recommend a low residue diet during flare ups but please talk to an expert before trying to heal yourself with foods, drinks or any herbal remedies.

W is for Weight – IBD can really negatively affect weight, for many the disease stops the body absorbing nourishment which means drastic weight loss and those people really struggle to keep themselves at a healthy weight. For others the meds and illness cause weight gain, puffiness and bloatedness. Neither is healthy and neither make the person feel good.

X is for X ray – Or Xylophone. But I can’t think of a way to connect IBD to a xylophone so we will talk X rays. X-rays form a series of tests that may be done on people with IBD. Sometimes using barium and at other times without, X-rays are used less these days as clearer tests are more commonplace. I have had a couple of X-rays before to check for toxic mega colon, which is not a Muse song but an acute form of colonic distension where the colon becomes extremely swollen and massively enlarged.

Y is for You – How IBD affects you comes down to how you choose to deal with it, it is bloody hard work to be ill and it can be depressing and make you angry, sad and broken. But your courage and bravery of just getting through each day is something to be proud of, remember that.

Z is for Zzzzzz – Or sleep (give me a break, Z is hard!!!) IBD can not only affect the amount of sleep you’re able to get but the quality of sleep as well. Whether it is through medication, pain or getting up through the night with diarrhoea and bleeding, lack of sleep can cause all sorts of problems such as

Difficultly getting to sleep
Difficulty staying asleep
Problems with concentration
Headaches
Poor attention
Changes in mood
Fatigue throughout the day

Side effects from many medications that are given to an IBD patient can also cause sleep problems. Steroids such as Prednisone can keep a person up all night.

Love Sam xx

International Women's day 2014

4th February 2014/0 Comments/in Blog/by sam

I was absolutely thrilled and blown away to be invited to be a speaker at Experience Barnsley’s International Women’s Day event on 8th March this year at Barnsley Town Hall. It is £2.50 a ticket so if anyone fancies coming to hear me talk about bowels, shit and self esteem I would greatly appreciate the support!

Along with three other amazing speakers I will be doing a talk about my journey with IBD and how this and my ileostomy affect self esteem and body image.

Dr Lorna Warren is a lecturer at the University of Sheffield and is doing a talk on a project called Look at Me which has worked with women in Sheffield to explore representations of women and ageing in the media and to produce new images to challenge existing stereotypes. An amazing project that you can see more about here.

Anne Fay is the head of education at Wallace Collection and her talk on The Beau Monde sounds fantastic.

Author and Lecturer Katie Edwards talk on religion and feminism is one Im really looking forward to.

It is an honour to share a stage with these women and though Im frankly terrified I am hoping to deliver a speech that will explain both the physical, emotional and mental affects of illness and surgery on female body image. Ill be discussing how I dealt with the last ten years of ulcerative colitis and then my operation and how positivity has played a huge role in dealing with the emotional side of living with a stoma.

I talk about poo A LOT on this blog and the thought of talking shit to a room full of people is both amusing and scary. In September when I lay in HDU at the Northern General in Sheffield covered in tubes, with my arms full of canulas and feeling so weak that I couldn’t lift my head, I never dreamed that six months later I would be standing in Barnsley Town Hall being a speaker for Yorkshire women.

Thanks so much for the support of all you people who regularly read my blog, Facebook and twitter. Being part of International Women’s Day is an absolute dream come true and I just hope I do you all proud.

Thanks

Sam x

Johnny Cash – Quotes for Life

4th February 2014/0 Comments/in Blog/by sam

You know who was bad ass? Johnny Cash…

He is probably not the first person you think of when you are musing inspirational quotes, but here is why Johnny Cash is like a wise, wise buddha…

“Flesh and blood needs flesh and blood”

Humans need touch, love and company. If you find someone special in your life whether it is a partner, friend or general awesome chap, hold them close and cherish them

This is a good one for us IBD warriors. We got to be tough, we have to be stronger than the constant shit we deal with every day x

“Its good to know who hates you and it is good to be hated by the right people”

Dude, someone is always going to hate… Those people, those haters, they aren’t the ones you want around you.

“I keep a close watch on this heart of mine,
I keep my eyes wide open all the time,
I keep the ends out for the tie that binds,
Because you’re mine, I walk the line.I find it very, very easy to be true,
I find myself alone when each day’s through,
Yes, I’ll admit that I’m a fool for you,
Because you’re mine, I walk the line.As sure as night is dark and day is light,
I keep you on my mind both day and night,
And happiness I’ve known proves that it’s right,
Because you’re mine, I walk the line.

You’ve got a way to keep me on your side,
You give me cause for love that I can’t hide,
For you I know I’d even try to turn the tide,
Because you’re mine, I walk the line.

I keep a close watch on this heart of mine,
I keep my eyes wide open all the time,
I keep the ends out for the tie that binds,
Because you’re mine, I walk the line.”

I couldn’t pick one line from this song as its all so perfect, one of my favourite love songs. The right person by your side makes you want to be a better person, because you’re mine, I walk the line.

“You build on failure. You use it as a stepping stone. Close the door on the past. You don’t try to forget the mistakes, but you don’t dwell on it. You don’t let it have any of your energy, or any of your time, or any of your space.”

“Life is rough so you gotta be tough”

“This morning, with her, drinking coffee” – Johnny Cash about June Carter when asked his description of paradise.

Sigghhhhhhhh <3

So when you are struggling in life, ask yourself one question…

And if all else fails, laugh at this.

Sam xx

Bride with an ileostomy bag

1st February 2014/0 Comments/in Blog/by sam

I have been married to my awesome husband Timm for ten years in May 2014, we married in Las Vegas with Elvis in gold lame, an amazing experience that was so fun and just right for us at the time. We had two small kids and the pressures of planning a big white wedding got to us and so we packed up and eloped to have the most ridiculous, fantastic wedding we could think of!

We had an absolute ball and it was just right for us, but it was marred with sadness that some people who really mattered to us couldn’t make it. So for our tenth wedding anniversary we decided to renew our vows, that is happening this September in a ceremony and reception that we can invite all our nearest and dearest to.

I am currently in the midst of planning the whole shebang, I am spending more time than is healthy on pinterest and just trying to plan the perfect wedding for us now, ten years older and wiser. Im looking at beautiful venues, Ive asked my (NINE) bridesmaids if they will be part of our day, we are looking at food and music, themes and Im spending a LOT of time reading Rock n Roll Bride.

But Im also feeling worried. Im thinking about how this will be a day where Timm and I are centre of attention and crazy scared about being a bride with an ileostomy bag. I brazen it out most of the time and if you read my blog you know Im not against showing my bag off, it helps me to think Im helping raise awareness when I talk about my experiences with a stoma but sometimes it hits me hard.

As I look through hundreds of beautiful wedding dresses I look at the fronts to see if my ileostomy bag would be on show, I think about where waist bands will sit and whether they will cut across my bag, I wonder whether my forced cheer will hold out on me wearing a big white dress. I think about the horrific consequences of a bag leak in a wedding frock!!!

I see all this gorgeous, silky, lacy wedding underwear and laugh wryly wondering if they do anything to fit around a stoma, then I get scared that I won’t be a ‘proper’ bride whilst sporting an ileostomy under my gown. I wailed at Timm this morning that Im going to be a bride that smells of poo… He laughed his head off and reminded me that I never smell of poo and gave me a cuddle.

Im finding it hard to put into words how I feel about being a bride with a bag, of course I know it doesn’t make a difference, but I can’t help feeling a bit sad that I won’t be a ‘perfect’ bride. Id love to be able to take the stoma off for a day, to have one day where Im not thinking about medical things. I want my bridal handbag to be filled with pretty things and perhaps a drop of dutch courage, not stoma adhesive and barrier creams. I don’t want to have to worry that if I drink champagne that my bag will get gassy and Id rather my wedding night didn’t involve a big plastic bag stuck to my stomach!

I sometimes worry that Timm shouldn’t have to deal with all this, that he should have a wife who doesn’t carry bodily waste around with her. And I suppose those feelings are coming to a head whilst planning our renewal. I DO know that all these things are in my head, that in reality Im a super lucky woman who has a husband who loves her. I also know that our wedding renewal is about love. Its a celebration of our relationship, our joy, our devotion to one another. Its nothing to do with being perfect, anyone who has been together fifteen years knows their partner isn’t perfect, because we are all deliciously and uniquely flawed, its what makes us who we are.

Timm said to me this morning “I think you are beautiful at your very worst, at your best you have me in tears”

And thats why Im marrying him. Again.

Love Sam xx

What would you say to your 16 year old self?

29th January 2014/0 Comments/in Blog/by sam

A bit of a different post from me today, but after 2013 being a tough one with illness, surgery and learning to live with an ileostomy I have definitely begun to reflect more on my life. I saw a post on Facebook from my friend and awesome parent blogger Corinne from Motherhood Journeys. It was a photograph of herself as a youngster and she was thinking of what she would say to her 16 year old self.

It got me thinking as to what would I say to myself if I could go back 16 years and speak to the young woman I was then. People who know me now don’t believe that I was a shy person, to be honest I still have days of crippling self doubt and a reluctance to speak to people in case they find out Im a fraud, that Im not nearly as grown up as I seem, Im thick and I am a total dork. But at 16 I was basically scared most of the time. I covered it with being loud and silly but I felt less than others around me, I idolised TOTALLY the wrong people and ended up boosting my self esteem (or so I thought!) with relationships with men who were, to be honest, fucking idiots!

Family life was difficult, I lived between home, with sisters, with an aunty, in a student house for a while and for a brief stint alone in possibly the most terrifying flat in Sheffield… I found myself entering the adult world feeling completely adrift, I had no idea who I was or where I wanted to go. I clung onto other people’s dreams by following them into jobs and college courses that they seemed so excited about and so I thought it was the right path for me too. I drank alcohol because others around me did, I smoked, went to nightclubs and got myself into situations that were stupid and dangerous.

So what would I tell my 16 year old self? I’d tell myself that it will all get better, that everyone feels that weight of doubt inside them and that there is no rush to grow up. I’d tell her that her weirdness is great and the sooner she accepts it the happier she will be. I’d tell her to stay in college and go to university because she’ll regret it for the rest of her life if not. I’d tell her to travel the world before settling down and that kindness is the key to a happy life. I’d tell her to dump the man she is going out with because that dangerous flare of temper becomes a hell of a lot less sexy very, very quickly and that the man she will meet in a years time may cause a few tears and at times the relationship will be stressful but he will become her best friend, her soulmate and her husband.

Id tell her that she can’t help everyone, that sometimes the best thing to do is to walk away from a terrible situation as though she is only trying to make things better, it simply drags her further down. Id tell her that self esteem can ONLY come from within and NEVER from the men she thinks will care for her. Id tell her that tequila is not her friend and it will end in a night where she will awake in a fountain. (Don’t ask!!)

Id tell her she is enough. That she is good enough. That she has a kind heart and a good soul and the people who she wants in her life will see that, she doesn’t need to pretend to be anything she is not, she shouldn’t go along with the crowd and she should accept her ridiculous humour, weird personality and geeky self because it is enough.

Id tell her that her two school friends Tania and Hannah will be her lifelong closest friends, to hold them close and to remember that no matter how far apart you are, that they will always be the ones who will hold her up and make everything better.

Id tell her that everything will work out, that life is filled with ups and downs but with a good attitude and strong self belief, any situation can be overcome. Id tell her that when you fuck up, an honest, heartfelt apology goes a long, long way. That if you follow two life lessons of ‘Just be nice’ and ‘Try your hardest’ you won’t go far wrong in life.

And Id tell her if all else fails, go with your motto in life of ‘If you can’t sing well, sing LOUD’
So what would you say to your 16 year old self?

Love Sam xx

Struggling with a swollen stoma in the heat

17th January 2014/0 Comments/in Blog/by sam

Sorry it’s been a couple of weeks since my last post! We’re having such an amazing time in Australia that I haven’t had the time or energy. It has been non stop in exploring, visiting family and generally just having an amazing time!

My stoma and bag have been doing ok but the last few days I have been struggling. My stoma swells in the heat and when I’m exerting myself, I don’t want to miss a thing so I’ve been snorkelling, swimming, walking and doing everything I can. The problem is that my bag has to fit snugly around my stoma and so when I cut it to fit my swollen stoma, as the swelling decreases it leaves a gap and that gets the acidic output on my skin so I’m left with a Red raw ring of skin.

If I cut my bag to fit my normal sized stoma, when it then swells, my bag cuts into the edge of my stoma. It is now ridged, bleeding and very tender.

I’m in catch 22! If anyone has any advice it would be greatly appreciated. I have texted my stoma nurse for help and I have arranged a clinic visit for when I’m back in the Uk. We fly home on Tuesday, I can’t believe it’s been almost 6 weeks!!

Apart from the issue my stoma and bag have been entire dealable. I’m really glad we came traveling and would recommend anyone with a stoma to not be put off by the idea of travel.

This trip would have been impossible during a flare up. My bag meant I have had a trip of a lifetime and been able to enjoy things I never thought I would.

Love Sam xx

UPDATE – I spoke to my stoma nurse who suggested using a donut (a sticky , mouldable ring) around my stoma before I put my bag on. This didn’t solve all the problems, but it definitely helped!!

When in doubt call your super stoma nurse!!!! Xxx

Ileostomy swimwear

2nd January 2014/0 Comments/in Blog/by sam

I was a little nervous after my op about what sort of swimwear would suit me. I looked at a few specialist stoma swim wear places but couldn’t find anything I liked and so I have just stuck with my old stuff.

This dark swimming costume with large print totally disguises the shape of my bag and makes it feel secure against my body.

This was me on Christmas Day on the beach, it was a bit rainy and grey but I wasn’t letting that stop me jumping in the waves. My sister was another story though…

For bikinis I’m going for a fuller bottom, either little shorts or high waisted bottoms.

Having my bag and scar out does cause a few stares but I’m mostly ok with that, it’s usually from curiousity than anything malicious.

Today I was sat on a beautiful Australian beach in a bikini, I got a few looks but as I people watched, it got me thinking about just how many different shapes and sizes we all are. Some of us a skinny, some bigger, some busty, some flat chested, some of us have scars or even bags stuck to our stomachs. But the most beautiful people around are those who are confident, smiling and having fun.

So when people stare whether it is openly or surreptitiously, my first instinct is to feel upset, embarrassed or angry. I swallow it down and just smile.

Most people are good, I have to believe that and so I take their stares as folk being curious about something different that they probably haven’t seen before.

I hold my head up and be proud of how awesome it is that my body has healed me and my bag is making my quality of life better.

Sam xx

2013 – what a year!

30th December 2013/0 Comments/in Blog/by sam

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.

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!!!!

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.

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.

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.

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.

So that was 2013, lets see what 2014 brings!

Happy New Year to you all!

Love Sam xx

Sydney!!

28th December 2013/0 Comments/in Blog/by sam

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.