The Steel Giant and does a bad ass shit in the woods?

Today has been a big day for me in getting back to life, exercise and being outdoors. Since my j pouch operation I have had a few days out but today was the first real time I was out and about with no easy and quick toilet access and I was scared!

Physically I’m doing loads better but mentally I still struggle from time to time. I worry about having accidents, about not being able to live the life I want because of fear, I worry that I’m abnormal. But today had lifted my spirits and boosted my confidence!

I went for bike rides around Rother Valley Park today with my friend Caroline, Timm and all the kids. I only learnt how to ride a bike a few years ago so it was a bit nerve wracking but we had a fab time!!

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Then Timm, the kids and I went on a bit of an adventure, it was supposed to be a planned walk to see the Steel Giant but we were running late and missed the group. So we googled and found a ramblers walk and decided to go it alone.

Starting at Darnall train station I have to admit the start of the walk was not quite what I was expecting but as is the wonderful thing about Sheffield, within minutes we were in woodland.

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We then found The Steel Giant, a sculpture hidden away in the woods by the Sheffield Parkway.

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We had a great time exploring parts of the city we’d never seen before. Then the thing I was most frightened of happened. I was desperate for the loo… I couldn’t hold it and we were no where near any toilets. The question ‘does a bad ass shit in the woods?’ has been answered today…

You know what though? I had been stressing thinking this is the worst thing that could happen. That I’d be mortified and it would be the end of the world. Turns out it’s quite funny and now I’m telling you about it… I’m almost glad it happened as now I don’t feel stressed about it happening again. It happened, it wasn’t ideal, but I dealt with it and the world is still turning.

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I share these embarrassing things because unfortunately they are things us IBD folk have to face. But when shit happens (literally) you can either let it ruin your day or thank your lucky stars you have nappy sacks and baby wipes in your bag and laugh it off! I pick the latter…

I mean, look how pleased I am…

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So my lovely, beautiful, wonderful readers. Remember that when shit happens as long as you are a little prepared and can find your sense if humour, everything will be ok.

Much Love

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Sam xxx

Ulcerative Colitis patients needed for study…

This is from Denise, who is looking for 200 Ulcerative Colitis patients to participate in a 30 minute on-line project from 14th July – 15th August.

 

• All patients must be aged 18+
• All patients must be diagnosed with UC and have had surgery for it
• All patients must NOT be diagnosed with any of the following conditions:- Any diagnosed Cancer for which you are currently being treated for; Stroke; Multiple Sclerosis (MS); Chronic obstructive pulmonary disease (COPD); Chronic kidney disease; Diabetes (Including Type 1 and Type 11)
• £25 per participating respondent

This particular study is to learn about people’s health quality of life following surgery which they have undergone due to their Ulcerative Colitis.

If you want to get involved you can contact Denise Salinger as follows…

020 8905 3016
07956 248 777
moc.r1508384204egnil1508384204asesi1508384204ned@e1508384204sined1508384204

 

 

Love Sam x

 

Do we all need an IBDFF?

I ‘speak’ to lots and lots of people online about colitis, crohns, ileostomies, j pouches and alllllll that comes with IBD. I think it’s really important to have the opportunity to talk to other people who have similar experiences to you. There’s nothing worse than feeling totally alone and that no one understands what you are going through.

I’m so lucky, my husband Timm is so understanding, he takes time to listen, he supports me 100%, he loves me unconditionally and makes me feel that my illness has no negative impact on our relationship. I couldn’t ask for a better partner… But he just cannot understand what it’s like exactly.

Last year a friend told me about one of her friends who had IBD and surgeries and said if I wanted to she would hook us up. It was a bit of a hectic time and though I was interested, it just didn’t come off. I emailed him but think I got the address wrong and the moment passed with me focussing on recovering from surgery.

Then this year through the mighty power of twitter we finally managed to start chatting. And I realised that having a personal friend who “knows” makes a massive difference.  We’ve not met in person, but chat privately online quite a bit. He knows what it’s like because he’s been there. We can laugh and make totally inappropriate jokes about arses without the fear of making someone feel uncomfortable. I think he may be my IBDFF…

BFF

 

In the interests of privacy, we decided on aliases, and so he is the CrapBag to my Princess Consuella Banana Hammock… It works on many levels as he has an ileostomy bag and I have a pouch, plus we are Friends geeks and it made me laugh.

I think talking and support is key to getting through living with chronic illness, honesty with your nearest and dearest is a biggie. I’m so bloody lucky to have Timm, I can’t even describe how much easier he makes my life, he fills it with love and joy and makes me so happy (blerkkk… soppy alert) and he’s the one person who makes everything ok.

So I think it’s good for me to have another person to talk to, to share the load and not always be putting my thoughts onto Timm’s shoulders. I’d like to think I help CrapBag out too.

I think it helps that we have a similar sense of humour, things in common apart from the bad asses and a mutual friend so it doesn’t feel too weird.

What do you think? Do you have an IBDFF? Who is your support system?

Would some sort of buddy system help you get through the rubbish times and give you someone to share the good times with?

Let me know about your #IBDFF

Sam x

Tramlines – what a difference a year makes

Tramlines is a city centre festival in the great city of Sheffield, it’s an amazing thing and my lovely husband Timm is one of the festival directors and the production director so each year I’m lucky enough to get a little pass that allows me to hang out backstage and have a generally fantastic time.

But it also serves for me as a fixed point in time that makes me realise how far I have come in a year. You see, at last years festival I was ill. I was 5 months into the worst flare up of my life but I was trying my hardest to hide it.

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This photo was last year, I felt like death warmed up…

I was on a lot of meds and in my heart, I knew this time felt different. I was bleeding constantly, I had to wear pads in my pants as there was just so much blood. My stomach was agony and I was running to the toilet every few minutes. I didn’t feel up to going to be honest, but felt it was important to try and be normal and to show Timm my support.

I remember standing near the loos after yet another mad dash, doing as fast a walk as I could get away with, without looking insane to the toilets. I was with Timm’s sister Nancy and friend Michelle and I was telling the that things weren’t good. I’m close to Nancy and she knows everything about my illness and is a massive supporter of me and this blog.

I was telling her about the possibilities of future surgery, I remember quite naively saying that after the second op they just join everything back up and I’d live a normal life pooing just a little every time I had a wee! It all sounded so simple on paper and easy to describe, I don’t think I’d put my emotions into it and thought about the emotional and mental changes that would occur.

The whole conversation was very much hypothetical, I knew about the surgeries but had no idea that within 5 weeks of the day I would be on the operating table having my large intestine out.

So Bad Ass didn’t exist at this point, I was still quite embarrassed a lot of the time about my disease. Family and close friends knew but I kept it quite under wraps. I spent the weekend throat tightingly close to tears as I just felt so poorly and under so much pressure (from myself) to keep it together.

So roll it forward one year and I just can’t believe all that has happened in the last 12 months! This years Tramlines has been amazing. I stood in pretty much the same spot with Nancy and Michelle thinking how good it felt to be on only one medication (loperamide) that has NO side effects that cause me to get a big swollen mood face, manic episodes or total insomnia!!

A year into writing So Bad Ass, pretty much everyone knows what I have been through and so I felt no pressure to hide anything. I got so many amazing people coming up to me to tell me they read my blog and love it. It was quite emotional to know that I have made a teeny tiny difference to peoples lives.

Friends, Timm’s work colleagues, total flipping strangers(!!!) were coming up to me all weekend to tell me what So Bad Ass means to them and I just can’t tell you how much that means to me. To know that my little blog is being read, shared and is helping others makes me feel humbled and just blown away. Thank you.

One year on, I have learnt about my own strength, I’ve found a confidence I didn’t believe I possessed and though my health isn’t perfect and I’m still on a road to recovery from my j pouch surgery, I feel good!!

I watched lots of amazing bands, hung out with too many awesome people to name, laughed with fantastic friends till my stomach hurt, spent the weekend with my three kids hanging out with me, watched Everly Pregnant Brothers, the best northern, ukulele, pun based band you will ever hear, on Kelham island whilst the sun set.

I jumped about and went mental whilst watching Public Enemy then met Chuck D and Flavor Flav (yeahhhhhh boiiiiiiii)

I watched a woman hang by her feet and juggle swords upside down.

I drank my body weight in gin and peach iced tea.

I saw so many friends and got to hang out with them (even if it were only briefly with some)

I felt confident and well.

I felt no shame.

I felt happy.

Thank you Tramlines for the best year so far, I had a blast!!! Who knows where my life will be in another years time?!

Here are some of my favourite photos of the weekend…

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Back to hospital

So yesterday morning I saw Mr Brown in clinic and after examining me, he thinks I have pouchitis. He said I need antibiotics, fluids, blood tests, X-days and a pouch scope. And so I was admitted back to the Northern General.

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I had blood tests, X-rays, a night on the wards and a pouch scope and though my white blood cells were high there was not much else showing any problems and so I have been sent home with a course of antibiotics to knock anything nasty on the head.

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My first jpouch scope was a lot easier than anticipated. I was TERRIFIED going in, I’ve had plenty of colonoscopies and flexible sigmoidoscopies but this is my first since getting the pouch. I didn’t have sedation and it was all over in 10 minutes. It was a walk in the park compared to a full colonoscopy, a little uncomfortable and the worst thing was the air pumped in. I had a bit of gas and air but it was all fine.

Releasing (ahem!) the air was interesting… It’s already loud enough when I go to the loo now, expelling a load of air that been pumped in sounded pretty fucking amazing. If I weren’t so embarrassed I’d have called out to the rest of the ward “DID YOU HEAR THAT?!!!”

I saw the inside of my pouch which was odd but good and Mr Brown said it looked ‘beautiful’ – I had no idea what the appropriate response up that was so I thanked him… Then giggled.

He is my favourite doctor, it’s always a pleasure to see him and I trust him implicitly. Though I’m still concerned as to the cause of the pain and struggle to poo, I’m happy that he wouldn’t send me home if were worried.

So I’m home and hoping that the antibiotics will make me feel better. I’m still having quite a bit of pain and will have to wait and see how the crapping goes as I haven’t eaten in 24 hours so haven’t been.

Apologies for not replying to any messages (most only came through once I got home!) The internet signal in that hospital is ridiculously bad. It’s like the dark ages!!!

Thanks so much for all the love

Sam xxxxxx

Quick update – j pouch problems

A super quick update as I’m not up to blogging.

I’m having some problems with my pouch and so I’m going back to see my consultant tomorrow morning.

I can’t pass anything without a lot of pain, straining and basically feeling like I’m about to pass out.

Lots of pain in my belly and bottom and also passing what looks like coffee grounds which can be a sign of bleeding higher up.

I’m really exhausted and fed up but hoping that I’ll get some help tomorrow.

I’m feeling really sorry for myself right now. I’m regretting the operation and feel like my illness and recovery is just a massive burden to everyone. It all feels pretty sucky at the minute but I’m hoping that things will seem brighter soon.

Sam xx

Flashing my bag since 2013…

All this bag flashing in the media right now and Ive been showing off my life saver for ages! Hahahaa….

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For more badassness follow me on FACEBOOK, follow me on TWITTER, INSTAGRAM, YOUTUBE  or PINTEREST

Love Sam xx

 

 

So Bad Ass – what I do and why

I have had Ulcerative Colitis for over ten years now, and when my health took a real turn for the worse last year and I was facing surgery, I scoured the internet for support and help.  There were a lot of medical websites with confusing terminology and terrifying pictures and there were forums dedicated to IBD patients, but I found these difficult to interact with and like they had no relevance to my life.

I found one amazing blog called Inflamed and Untamed run by the ever inspiring Sara Ringer, her blog was the thing that inspired me to start So Bad Ass.  She was young and happy to talk honesty about her health, I fell in love with her blog and still follow her now.  But as she is based in the US I found some of what she spoke about just not right for the UK.

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Over a year later I am so proud of what I have achieved here.  I get thousands and thousands of people a week reading my little blog and so many emails and messages both of support and asking for my help or telling me that this site makes a difference.

I have spoken at International Women’s Day and been booked to do talks at Women’s Institute events and hospital charity events.  I have written for charities, blogs and magazines.  I am devoting myself to raising awareness off Inflammatory Bowel Disease, Ulcerative Colitis, Crohns, ileostomies, colostomies and j pouches! But more than that, I want to use my experiences to help women deal with issues around self esteem, body confidence and learning to be so bad ass and awesome.

Over the past couple of weeks there have been so much media attention given to ileostomies and it is amazing!!! It is the reason that I journaled my experience and have shown my photographs for the last year.  I think the more we see ileostomy and colostomy bags, the less taboo, the less scary and the less shocking they become.

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Im so proud of my IBD brothers and sisters for sharing the stories and photographs and getting IBD into mainstream media.  I did a story last year about how frustrating I was finding it to be hitting a brick wall when contacting (A LOT) of newspapers, magazines and media outlets and being turned away.  So to finally see stories and images hitting the headlines I am over the moon.

I just wanted to thank all my readers for staying with me on this journey, for reading, liking, sharing and tweeting.  I can’t tell you how much it means to know that I have amazing audience who support this blog and share it all over the world.

 

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It may take more time, but slowly and surely the message is getting out there.  I hope this blog and all the other blogs that are appearing now continue to raise awareness, spread a positive message and make a difference to the 260,000 people in the UK living with these diseases.

Hooray for us!!!

 

 

Love Sam xxx