Things I hate about IBD

Although Im a big believer in positivity, I also think it is healthy to expel all the things you hate, to write them down and cast them out and so I though Id do a list of things I hate about IBD, ileostomies and chronic illness.  With my surgery looming I am possibly not feeling at my most upbeat so bear with me…

I HATE not being a ‘normal’ person.  Not in the personality stakes as Im ok with being a bit odd and weird but in the health stakes, I HATE that I can’t just have normal bodily functions, that I have to have medication or surgery or different treatments to just function the way everybody else does.

I HATE being flaky.  By this I mean backing out of plans at the last minute because I don’t feel well, being unable to fulfil responsibilities whether they are family, work or friendships.

mr grumble hate ibd

I HATE that I can’t plan things in advance due to not knowing how I will be health wise on any given day.

I HATE that I feel weak.  That sometimes I can’t do the things I want to do and I have to ask for help.

I HATE that my illness becomes all I talk about.  Sometimes the last thing I want to do (believe it or not!!) is talk about my arse.

I HATE that my kids see me ill and unable to do the things I need and want to do.  I HATE that they miss out on things because of me.

I HATE that my illness and treatment upsets those around me.

hate IBD

I HATE that sometimes, no matter how confident I am, that slight rustle of my bag can, at times, make my self esteem plummet.

I HATE that my husband becomes my carer.

I HATE that I feel exhausted and broken a lot of the time.

I HATE that sometimes my disease makes me selfish, I am so snowed under by how the illness is affecting me that I am not aware of the people around me.

I suppose the key thing in all those things is the word ‘sometimes’.  Life isn’t always shit, most of the time I can overcome anything! But ‘sometimes’ these things get to me and it is easy to think life sucks.  When I feel like this I let myself have a good old wallow, because we do need to lay and weep eating our own body weight in ice-cream whilst watching a box set of My So-Called Life (or is that just me?) then I make myself think of all the awesome things in my life and I suck it up buttercup and move forward.
Love Sam x

Help with water bills

I have just discovered that people with Ulcerative Colitis, Crohns, a stoma or other long term illnesses that mean they need to use a lot of water could be entitled to reduced water rates.

The Watersure scheme caps your water payments.  To qualify you must…

  • be on a water meter or have applied for one and be waiting for it to be installed
  • be on certain benefits
  • have a high essential use of water.

watersure help with water rates for people with ulcerative colitis, crohns disease or a stoma

Either you or someone in  your household must get one of the following benefits:

  • income-based Jobseeker’s Allowance
  • Income Support
  • income-related Employment And Support Allowance
  • Pension Credit
  • Housing Benefit
  • Working Tax Credit
  • Child Tax Credit awarded at a rate higher than the family element.

 

High essential use of water means if you or someone in your home has a medical condition which they need to use a lot of water OR get this parents, if you have three or more children under 19 in your home.

These medical conditions automatically qualify as long as you meet the other requirements…

  • desquamation (flaky skin disease)
  • weeping skin disease (eczema, psoriasis or varicose ulceration)
  • incontinence
  • abdominal stomas
  • renal failure requiring dialysis at home  – although you won’t qualify for Watersure if you’re already getting a contribution to your water costs from the NHS
  • Crohn’s disease
  • ulcerative colitis.

You can also apply for Watersure if there is someone in your household who has another medical condition which means using higher than average amounts of water.  Water companies will ask for details from a doctor.

Apply by filling out a form from your water supplier, I looked on Yorkshire Water website and just downloaded it.

This sort of help is fantastic but no one tells you about it! I just happened upon it accidentally and Im filling the forms in now.  Im shocked about the three or more children rule, I don’t think many people know about this at all!

 

So take a look, hope it is of help for you all

 

Sam xxx

Harry the hernia

My hernia is getting worse by the day, it’s hard to know what to do for the best. It will be fixed in April during my pouch surgery but till then it’s getting increasingly difficult to deal with.

It’s a large hard swelling behind my stoma about the size of half a large grapefruit. There’s quite a lot of pressure behind it and as it sticks out I’ve actually knocked it a couple of times. Ouch.

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It’s quite hard to photograph myself but I tried so you can see what I’m talking about. This photo is looking down onto it, so you can see the left side of my tummy is flat whilst the hernia is pushing out from behind my bag. It makes the bags not work perfectly too.

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This is from the right side, you can see how far it’s sticking out.

There’s some information on parastomal surgery techniques here.

I believe that they will stitch the muscles and put a mesh into place that will stay in my body and reinforce the muscles where my stoma was. As I’m having the pouch surgery I will be having my stoma removed anyway.

Still no date on surgery, I think I won’t get a date till after my tests which I’m having on the 26th March.

Thanks for reading

Sam xxx

Losing weight

With my pouch surgery coming up in the next month or so, my consultant has asked me to try and lose some weight. Since January I’ve lost 12lbs and so I’m doing quite well but seem to have plateaued.

He has asked me to try to lose another 6 or 7 lbs as people carrying less weight have fewer problems and a better recovery than those who are heavier.

My problem is that because of the hernia I’m really struggling to do any physical exercise. I’ve stopped swimming because I’m scared of my hernia twisting and ending up not being able to get out and dressed as when this happens it’s agony and I’ve also stopped going to the gym.

My plan is to walk the dog every day, I can’t go fast but it’s better than nothing! I also struggle with some fruits and veg with my stoma but I’m going to try and just cut out all the sweet stuff and watch my portion sizes.

I really feel the pressure to lose this weight, I’m so scared of the next surgery and if I end up having any complications I know Ill blame myself if I don’t lose it.

So if anyone has any suggestions or tips for someone with a stoma and hernia to lose half a stone in a month they will be gratefully received.

Sam x

Visiting someone in hospital

As I start to mentally prepare for surgery next month I began to think about how lovely it was last time when I had visitors and I thought about some things that would help me this time.

When you are sick in hospital, visiting times really break up the day. Last time I was in two weeks, this time will be a similar time scale. Having a visitor really does brighten your mood and make things feel a little better. On the times I didn’t have visitors, I tended to go to sleep as it just felt awkward when others on the ward had family or friends there.

I know it can be a bit of a dilemma whether to visit or not, I’ve had family and friends say they wanted to visit but didn’t want to intrude, thought I’d be too ill or didn’t want to take up my time when I could be seeing my kids.

family visit hospital

Personally I love having visitors, I really appreciate anyone taking time out of there day to see me. I would only ask for you to speak to Timm my husband first, simply because visitor numbers are restricted and I’d hate for you to come and then not get in as I’m with the kids. I ask Timm not to bring our kids every day as it’s just a bit much for all of us, they find it upsetting, then they get bored and I feel upset and stressed. But the times they do come I love and so plan with Timm when you want to come as my brats are always going to outrank you so I don’t want you to waste a journey.

Talking of kids, don’t bring your own! No offence! Hospitals don’t like visiting kids and I’m ill so don’t really need your children climbing on the bed and being noisy! Sorry x

Check visiting times as they vary from hospital to hospital and ward to ward.

ulcerative colitis surgery ibd ileostomy hospital

Flowers… I LOVE getting flowers, from a posh bouquet to a hand picked posy, it just makes me smile. But some wards don’t allow them, mine didn’t last time and it just made me feel guilty that people had spent money on things I couldn’t have.

Any other gifts. I don’t need a gift from a visitor, as the saying goes, your presence is needed more than your presents. But if you really fancy bringing something I will gratefully accept! Last time I got things like lip balm, hand cream, magazines and peppermint tea. All fantastic! If you really want to bring a gift and don’t know what, ask me or Timm. Sometimes I’ll need a particular thing and he won’t be visiting that day (squash, a flannel etc) but seriously if you want to come, do not feel that you have to bring a gift!

Please don’t visit if you have a stomach bug or bad cold. The signs aren’t to be fussy. The patients can’t deal with your illness on top of their own!

Always use the antibacterial hand cleaner for the same reasons as before!

Don’t feel awkward and ask questions if you want to know about my illness or surgery. If I want to talk about it, I’ll tell you. If I don’t, I won’t. But I promise I won’t be offended if you ask.

If hospitals just aren’t your thing, or work/life make it difficult to visit and you want to get in touch. Please call me, text me, email me, send me photos of funny goats. One of the worst thing in hospital is boredom and any outside contact means so much.

 

Sam xx

Surgery news

After visiting my consultant (and ANOTHER bloody cock up with appointments!!) the decision has been made.

My hernia is causing too many problems and so my pouch surgery is being brought forward…. to April.

I’m really anxious and nervous but I am in the very safe hands of Mr Brown, my surgeon.

No exact date as yet as I need a couple of tests before we can book it in but he has said it will be April.

It’s been a bit of a big day between the news from hospital and today we moved house!

So just a very quick post from me today, thanks so much for all the texts, emails and kind messages wishing me luck.

Loads of love

Sam xxx

How do you define beauty?

We all know the old sayings of ‘beauty is skin deep’ and ‘beauty is in the eye of the beholder’ but do we actually live by them? Beauty is a billion dollar industry, we are sold images of beauty every day, studies say we see over 3500 marketing messages a day designed by marketing execs to show this narrow western ideal of beauty.

My talk last week for International Women’s Day was about chronic illness and body image and so it got me thinking about beauty, how we see ourselves, how the world defines beauty and where we fit into that concept.

My friend Helen sent me a message telling me to take a look at motivational speaker Lizzie Velasquez, she has an extremely rare disorder which means she cannot gain weight and I watched a video of hers called ‘How do you define beauty?’ where she talks about how she found a youtube video of herself naming her as the worlds ugliest woman.  I was blown away.  Watch this video and then think about it next time you want to make a ‘funny’ comment on a youtube video or random photo on the internet.  Remember her words ‘I felt like someone was reaching through the computer screen and punching me’, think about that before you post a comment about a celebrity or an unflattering picture of a stranger.

The amazing thing about Lizzie is her positivity, she accepts the life and the body she has and makes the absolute most of it.  Her strength, humour and positive attitude are BEAUTIFUL.

So how do you define beauty? Is it flawless skin and a size 0 figure? The perfect gym body? Toned arms and a six pack? Big pert breasts?  Or is it more than that?

Beauty to me is confidence, uniqueness, pride, kindness, positivity.  Beauty can be found everywhere if you are open to seeing it.  Size 0 or size 30, beauty is inside us all.  We just need to accept ourselves and let the awesomeness inside shine through, I KNOW that is easier said than done.  But we need to change the nature of society where we as women constantly put ourselves down, we are our own harshest critics and we need to be kinder to ourselves.

Its a shame that it took major surgery and living with an ileostomy bag for me to recognise and voice my wonder of my body.  It shouldn’t take such a drastic thing to see beauty in oneself.

We need to stop with the negative comments we make into the mirror and start with positive affirmations.  Say to yourself  ‘you are amazing’ ‘you are beautiful’ ‘you kick ass’ – say them enough times and you may start believing them.

self esteem quotes sam cleasby so bad ass

Think about the people in your life who are truly beautiful.  Do they fit into the tiny select package that beauty magazines tell us is beautiful? I have this friend and she is beautiful, but you would never hear her say those words because sadly she doesn’t believe them.  I wish she could see herself through my eyes, I see her as this magnificent person, she is kind hearted, open with her emotions, has  these gorgeous eyes that break my heart when they shine with tears.  I love her hair and she has an awesome rack… She has an amazing style, one of those annoying people who throw on several things that layer up like she’s just walked off a quirky fashion show.  Her heart is so big, she cares ferociously about those around her and has the most beautiful aura.

That is beauty.  That is what counts.

We need to stop giving ourselves such a hard time and be more ready with compliments for ourselves and those around us.  I am learning to accept compliments, I used to be embarrassed by them and make an argument as to why the person giving them was wrong…

Nice person – “I love your hair!”

Me – “Really? Have you not seen my roots?”

Nice person – “Your dress is beautiful”

Me – “This? It was really cheap.  And Im wearing massive fat pants to fit into it”

WHY???? Why do we do this? And so I make myself accept a compliment graciously with a “Thank you, that’s so kind” It doesn’t feel right, perhaps immodest to do this but I know I need to learn to be kind to myself and so if someone is nice enough to be kind to me, I have to learn to accept it.

If you do only one thing today, make it something good for yourself, tell yourself you are awesome.  Find just one thing that is amazing about you and say it out loud to yourself. (Perhaps do this at home rather than on public transport though as shouting “I have amazing breasts” on the bus is generally frowned upon)

Love Sam xxxx

IWD talk at Barnsley Town Hall – Body Image and Self Esteem

On Saturday 8th March I was invited to talk at Barnsley Town Hall as part of International Women’s Day by Experience Barnsley.  My talk was about my journey of ten years of chronic illness, surgery and living with a stoma.  I talked about Ulcerative Colitis and how my colectomy and ileostomy affected my life.

It was about raising awareness, trying to stop poo being taboo and relating my story to the average woman.  It was about body image, self esteem, confidence and positivity and how we need to both learn how to love ourselves as women and how to pass these things onto the young women of future generations.

Have a watch and please feel free to leave me a comment telling what you think.

Thanks for watching!

Sam xx

When things aren't going so well

It’s hard to be positive all the time, in fact it’s damn near impossible. The last couple of weeks have had ups and downs and I’m feeling the strain.

I blogged about Fridays events, Saturday we had friends over for dinner and had a brilliant night, it felt great to have a relaxed, fun dinner party with some wonderful mates. Overnight on Saturday I struggled to sleep,  having aches and cramps and just not feeling too good, Sunday was a chill out day but in the evening I was making dinner with Timm when the hernia struck again.

I went straight to bed and laid down, took my bag off and saw this big hard lump in my stomach right behind my stoma.  It was my insides coming through the hole in my muscles and it was fucking agony.  It was the same pain as Friday night so though it was extremely painful, it was slightly less scary as I knew what was happening.

chronic illness quotes

It felt like labour pains, a huge pressure in my abdomen and an unrelenting pain.  I was crying and panting and just couldn’t catch my breath, after an hour of this I asked Timm to call the hospital but with it being a Sunday night, my usually contacts of the stoma nurse, or stoma team at the hospital were unavailable.  In the end he called NHS Direct who seemed not to really understand the situation (they kept asking if I were opening my bowels and Timm kept explaining about the ileostomy).  Eventually after drinking peppermint tea, laying flat and having a heat compress on my stomach, I managed to massage and maneuver my intestine back through the muscle wall and the pain stopped.

I have seen my stoma nurse since who confirms that it is a hernia, and that the lumps and pain is due to my intestine squeezing through the hole in my muscles and getting kinked and stuck.  She says that hernias happen in around 40% of people with an ileostomy and that now the weakness is here, it won’t go away on its own and will just keep getting worse.

I have been in touch with my consultant who sees no point in performing a hernia repair operation as I am planning to have the pouch surgery this year anyway.  Originally I had asked if this could be performed in late September to fit around a crazy busy summer with work and our wedding vow renewal on September 6th.  This probably isn’t going to happen now, Mr Brown wants to bring the surgery right forward and I am seeing him this Friday to discuss.

The other thing I am struggling with at the moment is insomnia and tiredness.  Im struggling to fall to sleep and some nights Im up till 4 or 5am and then I feel exhausted all day.

I feel like I have taken a big step backwards in my recovery at the minute.  Everything seemed to be going so well, I recovered brilliantly and traveling in December and January was amazing, yet now six months down the line problems are sneaking up on me.

worrying quotes

Im not great at the minute emotionally or mentally.  I have been so busy with the talk at IWD and work as well as moving house this week that Im running on adrenaline I think, but in those quiet times at home I am feeling quite down.  I feel disappointed that I am struggling, Im a little angry that I have this hernia and I feel quite guilty that I have slipped back down the road of recovery and Im back to having to rest a lot and leave Timm to much of the things that need doing.

My sleep patterns are a problem, I just can’t fall asleep but then in the morning I am so exhausted that I can’t wake up, this teamed with the hernia means that Timm is doing 90% of the school runs, Im missing out on our family swim each week and I don’t feel confident enough to exercise, go to the gym or go out walking which isn’t helping my mood.

Im really anxious about bring surgery date forward, I have made the decision that I am going for the pouch surgery but thought I had six months to prepare myself physically and mentally for it.  Im stressed that bringing the date forward is going to make things really difficult for work and worried that I won’t be well enough to enjoy our second wedding.

feeling stressed quotes

But I do know that it is a particularly stressful time in my life.  This year I am moving house, getting married, running one business whilst working for another AND trying to build a brand for this blog and myself.  All this on top of not being in great physical shape and facing more major surgery.  Oh and raising three kids and running a house…

So I suppose it is normal that Im feeling weepy, stressed and frustrated.  It would probably be weird if I wasn’t worrying about the ton of things going on in my life.  Im trying to keep things in perspective though, accepting my feelings rather than swallowing them down.  Talking about the stresses Im feeling rather than pretending everything is ok.

Ill update more at the weekend when I have seen my consultant and know what the next step is.

Thanks for reading

Love Sam x

My brave body is no less beautiful because of its scars

My ileostomy is part of me and my scars , stoma and bag make my body no less beautiful than a body without.

If you have an ostomy, be proud of it, own it, love it. It probably wasn’t part of your life plan but it’s here now and you need to accept it and know it is saving your life.

My ileostomy bag is not unattractive, it’s not scary looking or disgusting.  I love the softness and femininity of these images, the lines of my body and lines of my bag become one.

I’m proud of my body and it’s strength, I celebrate my ostomy by showing the world that beauty is not about perfection, beauty is in everything, if only we can have a mind that is open to it.

woman with ileostomy bag beauty art empowerment confidence

woman with ileostomy bag beauty art empowerment confidence

woman with ileostomy bag beauty art empowerment confidence

Love Sam x