First swim with my stoma – the best feeling in the world


This weekend I felt truly free for the first time since my hospitalization six months ago.The bizarre thing is that although I have been feeling more human than I ever have during the 13 years I have suffered from IBD, ever since my operation I haven’t felt truly myself. It hasn’t been because I’ve been mourning my large bowel, or feeling unattractive – having my bag doesn’t make me any less attractive, if anything it has given me more confidence than I’ve ever had in my life – it’s because I haven’t been able to swim.

My lovely family - fish and chips at the fish quay

My lovely family – fish and chips at the fish quay

I know that might sound ridiculous, of all the things that have happened and I haven’t been able to do since the operation – from the very start where I couldn’t walk, wash or eat properly to struggling to comprehend an intimate relationship with my ostomy bag – that I would find the inability to swim the most restricting thing. But I really have.

Before my operation it didn’t matter how much pain I was in, how much blood there was or vomiting, all I wanted to do was to swim. Nothing would stop me getting into that water, putting my head down and going hell-for-leather down the middle lane. No amount of pain, blood and guts would stop me swimming. Swimming gave me exercise, focus and a way to get rid of stress. When I swam I felt the whole world drift away, any worry from work, home, hobbies, community projects just fell off my shoulders and into the pool and my mind would be free, unable to focus on anything apart from the repetitiveness of counting the number of lengths and, sometimes, annoyingly, dodging screaming kids.

Although some people would argue intensive exercise is not good for people during a UC/Crohns flare-up…from my experience I would argue the opposite. Running, jogging, hiking and dancing have always helped to give me focus on something other than the pain, and to ease stress – usually the trigger and exasperater of my particular disease. My main problem has always been over doing it. Usually by the time I’ve stopped swimming I’m sweating, which is something that’s puzzled a lot of people – just how do you sweat under water?

Anyway, normally swimming post surgery is not a problem. Ok its advisable and necessary to wait for any open wounds to heal and to not over do exercise in the first few months after an operation, and to basically take it easy – you don’t want to suddenly decide to become Michael Phelps over night. For me it wasn’t about fear but a great bit gaping scar that just would not heal and could not be submerged in water. Even a shower caused chaos – but there was no way I was going without them.

As I told you in the previous blog entry, despite still having my fistula pumping out gunk (into a bag, no hygiene risks here) my surgeon gave me the green light to submerge myself last week. He said I would be “fine” to swim and bathe, but to be sensible. So naturally at the first opportunity I went shopping for swim suits that flatter my new figure…only to be left almost crying on Chester’s high street as I realised no where stocked nice swim suits or high-waisted bikinis in the depths of Autumn – there’s simply not the demand.

The perfect coat shopping at Fenwick's in Newcastle

The perfect coat shopping at Fenwick’s in Newcastle

I was even left disappointed by Next’s catalogue range. I’d pictured lowering myself into the glimmering waters wearing a 50s inspired high-waisted bikini or a more Victorian ask bathing suit with stripes and all that jazz – I’m so nostalgic at the moment, I blame it on Mad Men – but the two viable options in the catalogue left me feeling far from inspired. It was a shame as I had been pinning my hopes on Next after a few tweets from ostomy societies and ostomates recommending them for their fab costume range.

Anyway, despite not being able to find my dream confidence-boosting costume my boyfriend booked us both a hotel with a swimming pool for our trip to visit my sister in Newcastle for her birthday. So after a rest on Friday night following the long drive I donned my very old post surgery swimming costume and went for a morning dip. Although my swimming costume didn’t exactly flatter my new body, with the lycra clinging around my ostomy bag, it didn’t really draw attention to it either. At first I have to admit that I was very self-conscious about it, pulling a towel around my waist to hide my stomach and bag, but once I got into the water I couldn’t have cared less.

Once in it was like I was alive again. I tentatively lowered myself in terrified that my bag might float off my skin or my fistula bag would fill up with water and fall off. But once I was in I had no concerns, but trying to stop myself going mental doing hundreds of lengths and giving myself a hernia. It was tempting, I was soon back into my natural rhythm, but after 20 blissful lengths I forced myself to give in – exhausted and realising I was working muscles that, well, hadn’t been used in months.

Very hungry after my morning swim

Very hungry after my morning swim

I’ve never been happier. I went swimming again on Sunday morning, doing 30 lengths at a fantastic pace, racing in between crowds of kids and generally getting back to my own good old self. I can’t wait to go swimming again, but with everything that’s going on now I don’t think that’s going to be for a while.

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Coping with a NG tube – guest blog as me & Winnie get 10,000 views


I can’t believe it but after just a few months me and Winnie have had 10,000 views on our blog.

I know this doesn’t mean that 10,000 separate people have read about my crazy mishaps and adventures with my temperamental ostomy, but I am honestly amazed that so many people have clicked on the different posts and read about my life.

When I first started this blog I didn’t think anyone would read it, apart from maybe my mum. I just wanted to help others who suffer from Crohn’s or Colitis (or any other kind of chronic condition) not to feel alone, and to show the world that having an ostomy bag is not disgusting, taboo, or something to be ashamed of, and that it most definitely isn’t the end of youth, fun and freedom – in fact after more than a decade of a life ruled by IBD having my operation has meant just the opposite.

Sharing these experiences with you guys has been eye-opening, fun and sometimes extremely emotional. At times sharing my story, pain and mishaps has been upsetting, but just the act of putting these feelings and problems out into the unknown for everyone to see has been sort of therapeutic. The responses I have got have been incredible. After years of being terrified about what the world would think of me if I had a stoma, me and Winnie have been welcomed with open arms into a community of brave, understanding and generous people, and thousands of strangers have accepted Winnie, despite all her poop, inappropriate farts and nuclear explosions.

I want to thank you all for sticking with me through all this craziness. Sometimes I’m incredibly bubbly and positive, other times these posts can portray the side to my life were the illness rules me and I just feel like a miserable wreck. I just wanted my experiences to help one person, and I thought if that happened the, at times, hellish journey I have been through would all be worth while. It’s safe to say I didn’t think anyone would read this, and I am blown away that so many of you have.

Anyway, now that I have got past this milestone I have decided to share someone else’s story on my blog.

I found Kate on twitter and was inspired by her positive attitude despite being relatively newly diagnosed with Crohn’s Disease, (and of course that she shares the same name as a certain princess) and at the time having to go through the trauma of wearing an NG tube. I guess I was inspired by how open she was being about the condition as I remember how I tried to hide mine out of embarrassment, so much so that I almost died from the shame. I’m lucky enough to say that, although I have had tubes shoved in places even aliens wouldn’t probe, I have never had an NG tube, (I avoided it by the skin of my teeth once!) and although I know I would put up with it I don’t think I would handle it anywhere near as classily as Kate. 

Hi, my name is Kate Middleton, I am 17-years-old from Liverpool. I was diagnosed with Crohn’s disease in November 2012.

Kate out and about with her NG tube

Kate out and about with her NG tube

I am going to tell you my top three tips for if you ever need for an NG (nasogastric tube).

  1.  Don’t hide away.

You are still you even with a tube in your nose. Live your life as if you never had it, you will start going mad looking at the same four walls otherwise

2. Ignore some people.

Most people will look then carry on with their own business but there are some people who will keep staring. Just let it go over your head and forget about them, they don’t know why you have it. Easier said than done I know.


3. Stock up!

Fill your house up with boiled sweets, ice lollies and fruit tea, this is more if you can’t eat while on NG feed but it just gives you a nice taste.

You can read more about Kate’s experiences with IBD at her blog: crohnsgirlblog.wordpress.com

 

(If you want to share you story, tips or any experiences please get in touch, it would be great if I could feature one guest blog a month to help spread awareness about how no two people are effected by IBD or cope with their stomas in the same way)