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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My appointment with the surgeon – my dream granted and the more serious stuff.


Today I had a very long overdue appointment with the surgeon. After the hardest week

not my surgeon but an internet pic

not my surgeon but an internet pic

at work to date, exasperated by gaining a horrid flu-like bug – thank’s to my none existent immune system someone only has to sneeze on Mars and I get a cold – I dragged myself out of bed and traipsed to the hospital to see the man who formed Winnie and finally got me under the knife.

Ok, before anyone yells at me, I know that you’re not meant to attend the hospital if you have a bug, because you could cause an epidemic, but I was not going to let a stupid cold stop me going to this appointment because, to be quite frank, who knows when he will sodding well have time to see me again. These appointments are as rare as gold dust. Trying to get an appointment scheduled for anything at the hospital is an absolute nightmare, but trying to get an appointment with a surgeon, well that’s taking your negotiating skills to a whole different league. For all the effort and constant calls it takes to get yourself slotted into a surgical outpatients clinic you would think they were trying to build a mechanical army – but in reality when you get there the waiting room is always empty and your surgeon is simply not as ‘oversubscribed’ as his secretary would like you to believe.

Oh and did I mention that these ‘rare’ meetings with my magic-hands man are scheduled months in advance – three/six months – and that forgetting them is a sin punishable by being struck-off. Scary stuff…they are highlighted around eight times in three separate diaries, two email accounts and even pencilled into my work diary for court cases – that’s how scared I am of being erased from that not so full book.

Anyway I dragged myself to the hospital while suffering from red-eyes and hair that looked like I’d stuck my finger in a plug socket. And found myself in the main outpatients waiting room full of people (who had also been too scared to miss their vital appointments) spreading their germs around to other people with little immunity to shield themselves. I sat there for around an hour before deciding I had been forgotten and taking myself through to the surgeon…to find that I was the only person waiting to see him.

Anyway, enough rambling, I walked into the room, sat down and waited for Mr Johnson my very lovely surgeon, who always seems to feel it necessary to hold my hand while telling me anything – nice, but sometimes a little too much if I’m feeling emotional. Today he told me how well I looked – a lie as I looked like death – and asked me how things were going, seeming unimpressed when I told him I had apparently been abandoned by the gastro team and was still on zero significant medication to help the flare-up of Crohn’s/Colitis I had been dealing with for the past three months.

He was also startled at the state of my skin, which is red and oozing around my fistula bag from all the leaks in Rome, which feels like a lifetime ago. The decided that in order to live a relatively trouble-free life I would need to have the remaining part of my redundant bowel removed so that I could be free of the pesky fistula…but that he was concerned about me having further surgery at such a young age.

I was like DO IT!!!! During the appointment I stressed that I wasn’t sure about reversal..what if the disease came back worse than ever when they reconnected me, what if I had to have more operations…I mean would it not be better to save myself all that pain and just have the whole thing removed once and for all? Me and Winnie (my stoma) are getting on just fine, maybe I will regret it in time (maybe I won’t) but for now I could see myself living just perfectly well with an ostomy bag for the rest of my life. I told him this and I seemed to make his day.

Like a frog

Like a frog

Before he got rid of me with a ‘you’re one of our favourite patients’ and a bit of intense handholding and eye contact as he explained I would need to have a serious think about the next step, which would be another significant operation, I braved the question I have asked on so many occasions and been met with a heart-breaking no!

“Can I swim?”, I said battering my eyelids and trying to look like the cute cat with big eyes in Shrek.

“Last time I asked I had the open wound, I love swimming, I think it would really help my stress levels”

And would you believe it he said: “There’s no reason why not!”

I felt like soccer punching the air and jumping for joy, and he looked genuinely delighted to be giving someone positive news after what had obviously been a trying morning.

Oh and he said I can have a bath….the luxuries!

So I’d like to say I left the hospital with all these incredibly serious thoughts in my head, permanent or not permanent, risk the J Pouch or have it all whipped away? But in reality all I could think of was dipping my head into water and swimming like a little frog up and down a clear blue swimming pool dodging other swimmers in a race to get to the poolside, with nothing on my mind but the soothing repetitiveness of counting the lengths against the water splashing in my ears.

That’s heaven, and once I’ve had my piece I will get on with the serious stuff.