Hello 2018! Life Update… New Website & More Surgery?

Hello and happy new year Crohnies!

I hope you all had a wonderful festive season and are starting 2018 as healthily as possible. I personally entered the year with a really horrible case of gastroenteritis that meant I had to cancel a trip to Krakow which no one wants! Thankfully I’m much better now, but that is one bug I hate catching every year!

This is the face of someone who is completely in the middle of gastroenteritis… it isn’t pretty!

There have been lots of changes going into the new year alongside my sickness blip including the new relaunched CrohnieClothing Website! It’s officially our own little website with links to all the social media and eventually I plan on selling the clothes I design through here too but in the meantime I’m determined to start blogging and making videos on the CrohnieClothing YouTube at least once a week through 2018 but ideally I’ll be posting every few days plus I’m now a resident blogger for SecuriCare so you can see my posts I do there too. I’m basically doing my best this year to raise as much awareness about IBD, ostomies and infertility as I can while showing you can do anything you want with a chronic illness and can have your own passions, like I do with clothing!

Having an illness should never stop you feeling 100% comfortable being yourself.

Now it’s almost exactly 1 year since I got my proctectomy surgery and it’s safe to say. I had a lot of complications but I still cannot recommend the procedure enough. It really has changed my life for the better as I’m no longer constantly leaking blood from my rectal stump and don’t need blood transfusions or iron anywhere near as often as I’m not loosing so much blood. My wound on my tummy ended up healing completely and I really don’t mind having a slightly thick scar apart from it being really tight which makes it ache when I lie down or stretch but I’m planning on having that revised down the line, it’s a small price to pay to not have the shadow of colon cancer hanging over me anymore! There is however one pretty irritating complication that I’m actually having surgery on, on the 26th of January this year so just over 2 and a half weeks away. I have developed a complication in my wound on my toosh which means that after the stitches came out and my wound opened up, it healed up to an extent but there are 2 little tunnels that have formed about 3cm deep in my cavity left from the proctectomy which is called pilonidal disease. It basically doesn’t really cause too many problems other than some bleeding and fluid leaking out every day but that is really irritating my skin since it’s always damp there now. My surgeon has said he’s determined to fix this so I’m getting what is known as a karadakis flap procedure which has been explained to me as basically coring an apple to get the tunnels out! This will basically mean February is a rough month for me in terms of sitting but I’m having a “treat yourself” month in preparation so that by the time the surgery comes, I’ll be so ready for a break!

It turns out that the scar from a proctectomy is completely covered by the ostomy bag so who cares if its a little thick, right?

Another huge, exciting thing that happened in 2017 was that it was our year of travel! We got to visit Fuertaventura and Orlando which was amazing! Myself and Stuart both really needed a break as we’ve been dealing with so much in terms of my health and surgeries so to be able to go do some of our favourite things like to relax by the beach and go to the theme parks was a complete treat. Due to my pilonidal disease it wasn’t recommended I swim in the sea or go on any body slides in the water park so I only really went swimming in fuertaventura in our salt water pool a few times and paddle my feet in the sea and only attended one water park in Orlando and was on antibiotics in preparation for it. It might not be the typical way to do things but we still got to do everything we wanted in our own way! I can’t even begin to explain how amazing these trips were so I’m going to have to do a post just on travelling after surgery!

Our hotel overlooked the beach so it was beautiful waking up every morning in Fuerteventura with such a gorgeous view! This was our relaxing break before the craziness of a Florida holiday so we completely relaxed for the week.our salt water pool was perfect for my pilonidal disease as I regularly do bathe the area with salt water so I saved a journey!Theres no way I’d ever get to experience any of the travelling without the care of Stuart, I am stable but I really often need his help with bag changes, being sick or even just advice on when to rest because I might be diagnosed for almost 11 years but I still don’t know my own limits! Orlando really is our happy place, we often joke that when we’re old and rich and our embryos turn into kids and go off to live their own life, we will retire to there and spend our old age in Disney World! Being stable enough to go to Florida is something I would never have been able to do without an ostomy and now my proctectomy. Life has its challenges, everyone’s does but we are extremely grateful to be at this point in our lives and be able to enjoy some time doing what we want rather than what my body demands of us!

We also had our first anniversary of our fertility treatment on December 12th, it is now officially 1 year since we managed to create 4 little frozen foetuses and it was the start of when I could start referring to Stuart as my baby daddy which I LOVE freaking him out with! We’re now hoping in the next couple of years to be moving forward in our journey so that after I’ve had my next surgery and we get the all clear, we’ll be planning on moving out then starting to think about defrosting our embryos and trying to become parents! I’m of course going to be blogging and videoing all of this over the coming years so I’ll definitely be keeping you up to date on how our fertility journey is going!

There’s no one else I could ever imagine wanting to make frozen little babies with! Even if the process is extremely clinical and not romantic in the slightest!

I think that’s enough to start 2018 with so I won’t bombard you with any more information for now! I’ll be back in a few days with my update video and my next blog all about travel.

Happy new year once again! I hope 2018 is a much better year for us all!

Jen x

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