Argh I’m 27…an amazing birthday and the Pride of Trinity Mirror


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I can’t believe that I’m 27. Well, actually, if we are going to be pedantic about it, I’m 27 and two days old (which makes me sound like a little kid trying to sound older). I know it will sound silly, but I already feel ancient. It’s probably a combination of the left-over dregs of flu, far too much alcohol due to a number of booze-fuelled celebrations, and a lack of sleep taking its tole, but every day since my birthday I’ve woken up feeling on the verge of my 90th!

Looking back there is nothing that I really regret about my 26th year on this planet. I’ve had surgery, tests, blood, guts, gore. Met amazing people, told truly inspirational stories. Worked at the Mirror, stayed in London, met royalty, seen a Broadway show and hundreds of dragonflies. Rode insane rides, climbed the Empire State Building, appeared on the BBC, waved a wand in Hogwarts, been to Wimbledon – and many more magical things.

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For the second year running I celebrated my birthday surrounded by incredible journalists and editors who work for Trinity Mirror, rubbing shoulders with people who both inspire and astound me with their talents and passion. Last year I was honoured (and astounded) to be named the Young Journalist of the Year, this year I just drank too much and met the queen of Countdown.

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Joking aside, I was humbled to be highly commended in the New Reporter of the Year (regional) category. The journalist who won the title, Neil Keeling, is incredible – he continued producing exclusive stories for the MEN despite suffering from kidney failure. I felt embarrassed to even be put in the same category as him to be honest!

Anyway, on my birthday I woke up with a pounding headache, and a memory of far too much wine, talking, and general fun following a very glitzy awards do. I dragged myself to the conference and had to put up with my ostomy making the rudest noises ever (as per usual when I’m hungover) while sat next to a room of highly influencial people (as I tried to listen to the speakers) , who have the ability to hire me and fire me, many of whom were sitting within hearing distance – typical!

Returning home on the train, clutching my certificate and a notepad of ideas for the office, I wanted nothing more but to go to bed and curl up with a yummy hot chocolate. Instead I unwrapped gifts (yippee), opened cards and was forced back into the cold for a lovely meal with my boyfriend.

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It was a stunning evening, filled with laughter (especially when the waiter got the whole restaurant to sing to me in my old name as it was on one of my cards on the table) and surprises.

Andy – god knows why he sticks by me – managed to totally shock me for the first time in our relationship, by keeping a secret for months on end. He had managed to plan a five day holiday to Bruges, complete with a spa break, rail travel and stunning hotels, without letting slip at all. He even booked the time off for me – so my editor was complicit.

How none of this leaked out totally flummoxes me! But he managed it, and it is the most stunning and magical gift I could have hoped for after our amazing trip to America earlier this year (which i am determined to blog about by the end of the week).

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So, despite feeling ever older and tired due to the Winter cold, this year I have had an amazing birthday, and got some lovely presents from my friends, family and colleagues… here’s to many more to come.

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Valentine’s Day with the other O word – ostomy


This is an amazing post about a subject many of you have tweeted and asked me questions about since my operation, sex!

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As of yet I haven’t felt comfortable talking about my sex life on my blog, mostly because my parents, siblings and employers often check what I’m up to and I’m not sure I feel comfortable about them reading about what I get up to in the bedroom department.

But this blog entry by a woman I admire deeply for her honesty over all issues to do with living life with a Stoma says everything perfectly, and just in time for Valentine’s Day too.

Personally, intimacy following my operation has been difficult to come to terms with. I have embraced all other aspects of life with a bag, but there is a lot to get used to and I think it’s not unusual to find yourself feeling unattractive when it comes to intimate situations. I have accepted my new body, and so has my partner, but I still have days which are tougher and I feel less attractive (due to bloating, leaking, bad fistula output, and general crappiness) than the last.

I know that I am attractive, and having a bag is a wonderful life changing thing that I should embrace, but like every woman I have days where I just feel unattractive and unhappy with the way I am, mostly that is related to my bags – almost every time my leaking fistula bag.

This Valentine’s Day I wanted to say thank you to everyone who is brave enough to talk about intimacy issues after surgery, which has helped me realise that there is a transition period and I should stop giving myself such a hard time. Living life with a ostomy takes a long time to get used to, the benefits are massive, but it’s ok to feel down some of the time.

I also want to say thank you to my boyfriend whose love and loyalty have never swayed despite all the sickness induced nagging. He has stuck with me through all of this journey, and I have never failed to be anything less than beautiful in his eyes. His support has made all of this so much easier to come to terms with, and I am so lucky.

Anyway I hope you find this blog entry useful from The Stolen Colon

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon

I have debated for a while about writing a post on sex. I know my parents and my parents-in-law and even my grandparents read my blog (I’m giving you fair warning that this is one post you can skip!), but I know that sex is an important subject when it comes to ostomies. It’s probably one of the first questions you have when you know you are going to have surgery. I know it was for me. You wonder not only about the “how is this going to work?” but also the “how am I going to feel?” It’s also a hard question to bring up for many people, so I figure here, on Valentine’s Day Eve, let’s talk about it. And we’ll talk about it online so you don’t actually have to bring yourself to ask about it.

Like I said, one of my first questions once I decided to go through with the surgery was, “how is this going to affect my sex life?” Thankfully I had a surgeon who this wasn’t his first go-round and he knew it was probably a question I had so he brought it up without making me have to. He told me that it would not change anything majorly, but it would be an adjustment, especially after getting the rectum removed. The rectum is right up against the vaginal canal and provides support, so no longer having it made things feel different. Not bad different, just… different.

Let me first go back to before my surgery. Sex has always been a little difficult for me, as I’m sure it is for many people living with Crohn’s disease or ulcerative colitis. There are so many concerns when living with a bowel disease. I was worn out easily, so I wasn’t always up for it. My stomach might be hurting and I’d be concerned about upsetting it even more. And then there is always the worry that when having sex, something might sneak out. You know… from behind. That was always a major worry. And it led to me tensing up a lot and trying to make sure that I was holding everything in, which didn’t always lead to a pleasant experience. But I love my husband and I know that sex is an important part of a healthy, long-term relationship. Still, sex, a lot of the time, became more work than fun.

So I was nervous giving it another go after my surgery. I knew I would no longer have to worry about the whole holding-it-in thing, but other concerns come along with it. Will I feel sexy? Will the bag get in the way? Will it hurt?

It was maybe 4-6 weeks after my surgery that we decided to give it a try. ( I did have a completely laparoscopic surgery, so if you had an open surgery, it could be a different experience.) If I’m going to be honest here, it was difficult at first. Yes, it hurt. Yes, it felt different. No, it was not fun. I am very glad that I have an understanding husband who is willing to be patient and let me take it at my pace. I would say it took at least about a month to start feeling comfortable again. So don’t get discouraged if it’s not what you think it will be right off the bat. Give it time. Take it slow.

Unfortunately, when I had my second surgery, we had to start all over again… again. It was my second one that removed the rectum so it felt even stranger than before. Plus, I still had a wound that was very close by that was trying to heal up and forced us to take things even slower. It was probably closer to six months until I felt like we were really back to the way things should be.

Right after my surgery, I was scared that I would no longer feel sexy and that my husband wouldn’t look at me the same way. Let me just say once and for all, I was wrong. It wasn’t immediate, but once I knew how much better I was feeling and got used to the idea of having an ostomy and a bag, I felt even sexier. I wasn’t worried about what might happen during sex and I was free to enjoy it the way you’re supposed to.

The bag does get in the way sometimes, though, so I wear one of my wraps to keep it in place. I also don’t have to worry about it getting pulled on it in any way. (These are the basic ones that I use from Target, but Awestomy and OstomySecrets have some fancier ones.) The wrap also helps me to not even consider my bag during those times.

I know that I have a different story from some in that I was already married when I got an ostomy and my husband was there to help me make the decision and to actually go through all of it with me. But for those who are not in the same situation, I would encourage you to not let your ostomy hold you back. I believe you will find the other person won’t be bothered by it and will more than likely be supportive. I mean, it’s sex. Why would you let something silly like a bag on someone’s stomach get in the way of that?

But in the scenario that someone does take an issue with it, then be honest with yourself, is that really somebody you want to continue a relationship with? If they have a problem with an ostomy bag, then they probably have other issues, as well. It’s their problem. Not yours.

In the end, even though there was an adjustment period and some initial concerns, I have found that sex can be just as, if not even more, satisfying with an ostomy than without (especially if you are dealing with some of the same issues I was beforehand). Don’t let it hold you back. You are still a beautiful/handsome/sexy person with or without a colon and with or without an ostomy bag. So enjoy it!

http://stolencolon.com/2014/02/13/out-of-the-bag-sex-ostomy/

Here’s to a healthy and happy 2014 – my New Year’s resolutions


Today on the first day of 2014 I’m suffering. But I can’t really complain as it’s mostly self-inflicted and the result of having far too much fun (if totally harmless) waving goodbye to one of the most chaotic and unpredictable year’s of my whole life. It’s safe to say that so far this year has been miserable, mostly due to the howling winds and non stop rain pounding against our flat’s windows, and the banging headache and dry throat from my hangover which is coming in peaks and troughs throughout the whole day and clinging to me like a small child.

Exhausted but happy before midnight

Exhausted but happy before midnight

Today is meant to be about turning a new leaf, getting fitter, healthier and leaving behind bad habits we’ve been unable to cast aside for the past year. I’m full of good intentions about improving myself this year, about becoming a more well-rounded, better educated, more generous, more adventurous person. I’m determined to stop eating sweets (I’m addicted), to keep in touch better with friends and to get back into running. So far that’s not happened, and I’ve spent the day gorging on anything I can get my hands on, in fact I’ve made it my mission to clear the house of sweets in time for tomorrow. After all everyone knows New Year’s Day doesn’t count towards New Year’s resolutions….I think that’s an unspoken law.

2014 is going to be my year. I know I must have more surgery to get rid of my bowel forever, and I know I will have to be admitted to hospital and live off dry tuna sandwiches and be nil by mouth (blah blah blah) all over again. But this time it’s going to be different, I can feel it. This time I’m ready and know what to expect. By the end of this year I’m determined to have Winnie (ostomy) as a permanent fixture in my life; I’m determined to be rid of my horrible fistula; and determined never to see blood in the toilet bowl ever again. I know it’s a lot of expectation but I feel after around 14 years I will really have made a massive leap forward by the end of this year – I know it because it has to happen, otherwise I don’t know if I can carry on.

Amazing friends

Amazing friends

Last night was an evening filled with love, laughter and good friends. I celebrated the end of one of the most emotional years ever with my best friend, her boyfriend, my adoring boyfriend Andy and a lot of other friends. I spent the evening surrounded by some of the most amazing people I know, playing games, chatting and generally catching up. At midnight we popped champagne on the balcony and hugged each other. Apart from too much alcohol the evening was perfect, and as per usual being only upstairs we managed to stumble home and to bed without even having to face the freezing cold – which has to be a bonus.

Anyway, enough rambling, here are my resolutions for 2014, let’s see how many I can stick to:

1) I will have my surgery – even if I have to fight tooth and nail I will have the rest of my colon removed. I refuse to be abandoned by my GI team and surgeon (which has happened) and be ignored despite the fact I am still very ill. I will have the surgery to feel fully better by the end of the year, and recover fully and be able to live my life fully without any interruptions from a horrible fistula or Ulcerative Colitis.

2) I will give up sweets and fizzy pop for the whole of January:
This is my equivalent to dry January. Believe me giving up Haribo and diet Coke is far harder than wine. I’ve done it before for months on end so it is possible, but I have to prove to myself I can do this without having to because I’m recovering from surgery or in hospital. I think I will be the grumpiest cow alive for the whole of this month, but my teeth and health will be jumping for joy after it – if I succeed.

3) go to the gym three times a week and swimming once a week:
This is it people. If my surgery goes ahead in March as I have requested I have three months to prepare, so that means getting über fit and healthy to give my body the best fighting chance. Last time I was fit but I was horrendously ill. This time I’m ill but in a more manageable way (if that makes sense), so I can really help myself. I’m determined to be able to swim 50 lengths in our gym pool (full-sized pool) non stop (no stopping whatsoever) by the time I have my surgery. I used to be an amazing swimmer, like a little fish, zipping through the water doing 120 in a much smaller pool in 40 minutes, now I’m still fast but nowhere near as determined or dedicated – that’s going to change.

4) get cracking with my challenges:
I’ve let my challenges slide a bit. I totally failed on my 6 month reading (read a book a week) challenge. I managed five months of doing it properly, but then started missing the deadline. I’m going to start this again. Starting this week I will read a book a week and let you know what I’m reading and what I think. I read dozens of amazing works of fiction and autobiographies last time, this time I can’t wait to get cracking again.
Tomorrow I’m going to restart my French which had been ‘in progress’ for the past five months…meaning I can say ‘the boy eats an egg’ etc. By the end of 2014 I will be able to complete a GCSE workbook, with the AIM of taking the exam in 2015… Tall ask I know, but that’s why these are challenges.
I will learn how to play my new guitar. So far I know two cords, E and E minor, by the end of this year I will be able to play a whole song.
Of course there are many more challenges and I hope to do many this year, including some of those incorporated into a massive trip to America, some stunning trips around the UK, and hopefully doing the Liverpool to Chester bike ride.

5) be committed to being a Ostomy and IBD advocate:
This year I want to spread the word about Crohns / Colitis and being an ostomate on an even larger scale. I want to resume my video blogs, write more articles, tell more people and set up a support network. I want to help others and raise awareness. And I want to create a website for this blog, where people can share hints, tips and ask questions.

6) be more organised and stay in touch with friends and family:
I have one incredibly organised friend, Laura. Without her I often think I wouldn’t leave the house. But I really don’t put in enough effort with my mates. Some I haven’t seen in months despite them living just down the road, and I’m fed up of making excuses. It’s time to become more organised and start making an effort. I need to start visiting some of my best mates from Uni who I promised to keep in touch with, organising nights out for my mates, and even planning a girls short break. These people have stuck by me through thick and thin and it’s time I made the effort, I’m well enough to really give it my all now.

7) spend more time, me and Andy, doing amazing adventures of a weekend:
We are getting better at making the most of the weekends. But sometimes they seem to be over in a flash without us even having done anything. This year at least one day every weekend will be special. Either by doing one of my challenges, visiting somewhere new, going somewhere special, visiting friends or going on a long walk in the country. I never want to go to work again and say ‘yeh we just watched tv and went to the supermarket’ again.