What Have I Bought Recently? Winter Primark Haul and Half Price Trainers! 

Hey Crohnies and Lucky Coiners!

I’ve got so many different purchases I’ve made recently and this week I’ll be making a blog and vlog about what actually happens during the IVF process since I’m finally starting hormones tomorrow… a lot depends on certain times of the month (not going into detail so I don’t ramble that’s for another blog!). I’m feeling fairly stable right now with my health, I have my usual losing blood from my intestinal stump all the time, tummy pain, back pain and exhaustion/weakness pretty much ruling my life… it could always be worse! I’ve had some pretty constant fevers the last few weeks because of my groin abscess flaring up but if it’s bothering me loads I’ll get it sorted just before Christmas (I’m hoping I can ask my surgeon to get it removed in January during the surgery but I might be asking too much!).

But anyway, back to the blog, what have I been buying recently?

Firstly I needed a new shirt, I modelled this outfit on an old Kourtney Kardashian look so I went with that since I love a shirt and I love to be a bit fancier when I go out. This shirt was only £10 from Primark and came with the little black tie attached.

I also got a burgundy bodysuit from Primark. It was only £6 and I find it really makes me feel supported with my bag and I don’t need to worry about it leaking since it’s not overly tight either! It’s like an ostomy waistband but in bodysuit form. 

I also got this cold shoulder embroidered cami top at Primark too (can you see a pattern forming? #PrimarkLoyal!) this top is only £12 and it’s actually a great length, I have a really long body so it is long enough on my to be full length so I don’t flash my tummy constantly like I’d do in some of the other ones that aren’t as long. It looks amazing with ripped jeans and heels for a night out… I might be wearing this next Friday when I go to see the comedian Sean Locke with Stuart and his family. I think that’ll be my first sleepover with having to take my hormone injections to but we’ll cope with that like we did with my ostomy stuff! Every days a school day with Crohn’s, fertility preservation and an ileostomy! 

I also got this super cute little grey jumper with Dachshunds in Christmas jumpers all over it! it was only £8 and am absolute steal since it’s so soft and warm! My favourite part of this is that it has proper full length sleeves, I hate getting a jumper that is like a cropped sleeve when I put it on… not everyone is small and it’s annoying when you’re tall and not always catered to! It makes shopping SO difficult because I have a bag, bloating and height all being an issue so my finds are the gems that make me feel confident in myself.

I have to say I’ve wore that jumper far more than is acceptable since I got it and since I’m me I wore it with my new tartan scarf, it was only £4 once again from primark! Tartan seems to be one of those things this season that is ridiculously on trend. I’m always a huge fan of it (it must be the Scottish in me)… so much so that I’ve bought myself a statement tartan bag I’m waiting on getting delivered from South Carolina! It’s a bit pricey but for what it is I’m so sure I got it for a steal! I can’t wait to show you guys it when it arrives!

I also spend a fortune on PJs… I like to have a new pair at least once per month since I spend so much time in them so here’s a collection of some of my recent ones, each piece is less than £10 and I like to get the whole set like leggings/tracksuit bottoms, t shirt and jumper or zipper when they have.

So now I’ve done my collection of Primark buys, it’s time to move on to how I got a brand new Pair of Adidas Gazelles so cheaply and it has basically to do with having small feet, I’m around a size 6 just now but I can be between a 5 and a 7 depending on the brand. I’ve found out that trainers are really big made so I can vary from a 5 and 5.5 in their size which means I am able to get them in junior sizes! Currently Gazelles cost about £75-£90 online in adult sizes but I went into JD Sports and there was a sale on so I managed to get an identical pair of them in black for £35… this is crazy but I saved £40 and it’s worth it! If you have small enough feet and you don’t take advantage of these I will be shocked!

So that’s all my recent purchaces apart from what I got this weekend at the Christmas Fair from Country Living and I’ll do a little picture of these below. The sheep was £14, the bracelet was £10, the squirrel was 2 for £10 with another secret one! Fudge was 3 for £5 but they gave me one free and the shortbread was 2 for £16 and I can’t help but eat this stuff constantly!

Anyway that’s all for now, hope you all have a happy Monday!

Jen x

An Ostomy Friendly Halloween Costume You Will Be Desperate To Wear Again! 

Hey Crohnies and Lucky Coiners,

With Halloween upon us only next week I have come up with the quintessential PopCulture costume of 2016 with plenty of parts I promise you’ll wear loads over winter since the dress is perfect for the party season!

Most of you by now will be completely aware of Stranger Things the Netflix Original Show which has taken the world by storm. Since I am a HUGE fan girl I wanted to dress just like Eleven one of the main characters (I do have the hair for it!)

My costume is something you could literally buy in one high street trip and is completely Ostomy Friendly.

Firstly I started with the dress. I hate buying things I won’t get use out of (I’m very particular and hate risking my bag being on show in a tight fitting dress too) so I decided to get the H&M Short Lace Dress in Pink, £29.99.

I think this is a pretty close match for the Stranger Things dress and use an elastic band to gather the sleeves in. I’m actually also considering wearing this to the Herald Fashion Awards next month so I’m definitely getting wear out of my new dress!

Next I moved on to the socks Eleven wears… if you want ones similar to Eleven you’re going to be spending £20ish online but I’m just wearing some American apparel ones for £10…

Throw these in with some white Converse  from Office, £44.99 from Office but let’s face it this is another thing most people have in their house and if not they’re a wardrobe staple you’ll wear to death! I bought mine in May and I’ve already got that beaten look from wearing them so often!

Finally I pulled this together with a Navy New Look Bomber Jacket, £24.99 which is really in this year so even if you don’t get the most wear out of it this winter, youll be glad to have it in spring!

This is honestly the most creative I’ve got for a costume as normally I buy the generic costume shop ones (last time I went out I was Poison Ivy) … insert picture here….

It’s hard to tell but I am in costume! And my hair was so different!

But this is my first year dressing up with an ostomy and I have never felt more free and my bag can move and fill up all it wants and I promise you won’t be able to see it! To prove it I had to take a picture with a half full bag and show you just how flattering this costume really is!

I don’t know about you guys but I’m so happy with how it turned out and I absolutely love getting to use my hair as Elevens wig!

Hope you guys like this blog and happy Halloween when it comes!

Jen x

My Life – Frequently Asked Questions! (Part 1)

Hey Crohnies and Lucky Coiners,

I get asked a lot of questions quite a lot… from questions about my personal life to Crohn’s to starting a business so young to having an ileostomy (bag) so young to embryo freezing to going to uni so I thought I’d take the opportunity to answer some of them here!

What is Crohn’s Disease?

Crohn’s is an incurable autoimmune disease which mainly affects the intestines and digestive system, your immune system starts attacking your organs causing inflammation (Crohn’s is a type of IBD – inflammatory bowel disease) because it can’t tell healthy cells from bad cells with varying degrees of severity.

When were you diagnosed? 

I was 13 when I was diagnosed but I had severe symptoms for about a year before and some symptoms I’d had all my life and basically don’t remember a time before I had pains in my tummy.

What treatments have you tried? 

All available medicines on the NHS I had tried, my main meds over the years were Azathioprine, Methotrexate, Inflixumab, Humira and trial drug Andante which Pfizer withdrew from trial in 2014. During this time I also had 8 years worth of steroid treatment (both iv and oral).

What is an ileostomy? 

An ileostomy is similar to a colostomy and it is an opening in your abdomen in which your small intestine is brought to the skin and folded back on itself to create what is known as a stoma. From this you poop into a bag which basically sticks over the stoma to collect your poop which continuously comes out. It is given normally when you either have a temporary ileostomy in which you have part of your large intestines removed and needs a chance to recover before being reconnected or a permenant ileostomy and have no large intestines.

This is what my stoma looks like! 

Will I ever get a reversal surgery and get rid of my ileostomy? 

Sadly for myself I have a Bag for Life which means I have no large intestines to reconnect and I’m awaiting surgery to remove my rectal stump and anus which will leave me with nothing to reconnect as my intestines were in a really bad condition.

How severe is your Crohn’s? 

I was discribed my my pediatric IBD nurse as being one of the worst cases in Scotland and it has only been proven time and time again. I have basically every complication they warn me about before they start a treatment.

Why are you getting your anus removed? 

I am getting it removed because at this point in time I am bleeding from it constantly. If I don’t pass the blood it tends to flood out in awkward times leading to embarrassment and also keeping me anaemic which will lead to needing at least 1 blood transfusion during/after surgery. My rectal stump was also falling apart after my ileostomy surgery, this meant that he staples used to close that ripped out and travelled through my abdomen and led to 4 of them poking out my stoma! After that a leak of intestinal mucous and blood pooled in my abdomen and led to me developing sepsis.

What will your bum look like after surgery? 

It’ll look completely normal from the outside, my cheeks aren’t going anywhere, I’ll just have my bum hole stitched up and it’ll be what I like to describe as a massive gooch! Haha!

What’s it like having a stoma? 

It has been tough I won’t lie. I hated my stoma for the longest time and still don’t feel completely comfortable with it (for example id never feel comfortable leaving my bag off for a shower). I am however learning to deal with it mentally and it doesn’t freak me out anymore!

It is strange because even though it has no nerves and the stoma has no feeling I am always very protective of it and I am always hyper aware of anyone being near it. It isn’t painful when food comes out unless I have a blockage or am dehydrated and the poop is really formed as this tends to give me a really sore tummy. My skin isn’t great now under my bag, that’s the red bit around my skin in the picture above but I have a system that every night I change it, clean it and let it dry with steroid cream for an hour and that is helping so much!

The bag is easy to deal with when it comes to emptying as they have a Velcro opening that can be unfolded to empty the bag and emptied into the toilet between my legs and the folded away once I’m done. It is also ridiculously easy to hide under clothes, it is really flat most of the time and is so discreet no one has ever guessed I have a bag unless they were told.

What does the bag look like?

This is my little bag yesterday. It looks kind of big here but this is the midi size. There are also bigger ones for after surgeries or at night when I’m ill and there are also tiny ones for under dresses and for swimming etc. 

Was your boyfriend not put off by it? 

I can’t speak for Stuart myself but from what he’s told me, my Crohn’s and ileostomy have never been a problem for him. He doesn’t think about them as negatives of being with me, they are just part of me that can’t be changed. I did ask Stuart once if he stayed with me from obligation and he told me he definitely wouldn’t be with me if he didn’t want to be! (1,2,3 … Awwwww! ❤️)

How did you and Stuart meet if you can’t get out much? 

Basically I met Stuart 3/4 months before I got my surgery to get my ileostomy and I didn’t get out much and really meeting someone wasn’t high on my priority life but I had been recommended Plenty of Fish the dating site as a way to chat to new people and see what happened… a lot of weird questions later Stuart pops up in my chat and says hi and after talking for a few weeks I met him rather dangerously on a Friday night outside the Cathouse Nightclub as he was on a night out and I was on my way home from a friends… I just felt I had to meet him and ever since we haven’t been separated and we just celebrated our second anniversary!

Insert cute anniversary picture here! 

How have your parents been since they discovered they have a crohnically sick child? 

I know they struggle a lot with it. They have always said they wish they could take my pain away and take it themselves which I find really sad. It was a huge learning curve when I was younger and I had to have my mum organise my medicines for me up to 8 times a day, my mum and dad had to prepare my milk because I was tube fed for a few months and having to learn how to store injections alongside watching me suffer a lot.

I can’t even count the number of days they’ve spent at the hospital with me, basically their lives revolved around my Crohn’s for the longest time and to an extent it still does. They’re still heavily involved in my day to day care since I live at home but I know that after surgery I’ll be completely dependant on them and Stuart and I know that they find that hard to watch although they do everything they can to get me better.

I don’t know how they do it because they are so strong for me all the time but I know it breaks their hearts whenever I have another set back which is pretty much all the time.

What are your day to day symptoms? 

Every day I have pain. It is basically my life as I have been told now that it is not about getting rid of my pain, rather than making it not hurt enough so I can get on with my day and not get depressed about being in pain so I’d say every day I’m about a 4 on the pain scale. This is due to having scar tissue and inflammation in my abdomen and also my bones hurt due to the long term steroid use that caused my bones to become crumbly at the joints.

I also have a lot of nausea because most of the medicines I take for my Crohn’s irritate my stomach. This can lead to heartburn or me being sick a lot which drives me crazy because the only antisickness medicine that works for me can counteract with my sleeping tablets and painkillers to slow my heart rate and cause me to need to go to hospital!

I also have ostomy bag leaks a lot, I usually leak about 5 times a day but now I have my routine I’ve only leaked 2 times in 3 days!

One of the strangest Crohn’s things I have is that I am really susceptible to abscesses and I have a really bad recurring one at my groin which I’ve had removed multiple times but it keeps coming back so I’m either in pain from the abscess or I’m feeling sick from the antibiotics to try and help the abscess! I can’t win!

I’m also permanently exhausted. My body works much harder than an average persons so I tend to be constantly tired no matter how much rest I get because my body is struggling with all its extra problems.

The last few months I have also developed asthma and hypoglycaemia meaning I am struggling to breath often and get very faint from not being able to get enough oxygen in the time it takes my inhaler to work and I also have to monitor my blood sugars as they are very low a lot of the time. This is probably due to me not absorbing the sugar from my diet very well due to the scar tissue in my intestines and basically I’m probably not getting enough in my diet anyway.

Have you seen this article about how marijuana cures Crohn’s? 

The fact this is illegal means it could seriously jeopardise my care and leave me in a position of mistrust with my team of consultants, surgeons and nurses. Thank you for caring but my health is too important to me to risk it on something illegal that would jeopardise that relationship with my caregivers. If over time it becomes legal here and I am told by my own team it is of benefit to me I would gladly take it but I personally won’t be interested in taking part in any more drug trials at the moment.

Following from that, why would I not be interested in being part of a drug trial?

Most of you who have followed my journey for the last few years will know I was in a year long trial of the drug Andante that Pfizer (the pharmaceutical company who produced the trial) withdrew from trial and compassionate extension and took me from feeling better than I have in about 7 years to then getting my ileostomy which was really scary for myself. My experiences with the trial totally changed the way that my consultant deals with trials because he will no longer accept trials for patients that would not allow them to stay on the drug long term if it works for them. So I really just don’t want to get involved just now because it was a hard time for me previously going through it. However, if the right trail drug came along I wouldn’t ever say I’m definitely not going to try it just because at the moment I’m not ready to go through it again and deal with potentially receiving a placebo for a few months.

What are your hospital essentials?

Okay well let’s include the obvious stuff like stoma supplies, meds and pjs and undies but then add in daytime clothes if I’m feeling fancy and not in pain I’d normally have jeans and t shirts, also leggings, joggies, hoodies and lots of hair ties.
Then I’d have my phone, laptop, chargers, notebooks, uni work (unless it’s summer). I also need snacks and stuff like sweets, crisps and bagels. I also have to get my dinner brought up every night because hospital food is so bad it makes me sick. Every. Single. Time.

What’s the hardest part about being sick? 

For me it’s hard to talk about it but mainly it’s so hard to watch everyone else my age get to live a full life that isn’t in hospital constantly and they’re moving on but I’m still stuck in this weird 2007 life changing bubble.

I really just hate how the world keeps turning but I still stay the same old Jen.

What’s actually happening with the first line of CrohnieClothing? 

Currently I’ve been designing all the clothes I want and their adaptations. It’s hard to try and get manufacturers to take you seriously when you’re a young person. They definitely don’t expect me to have a clothing line and think I’m just taking the piss out of them so I get a lot of non responses after meetings or phone calls (I’m talking to you glasgow based manufacturer who never called me back when I was ready to place an order…)

So yeah just now with going through fertility treatment, being ill, having uni and surgery coming up, it means that the business in the sense of proper manufacturing isn’t my top priority. However I promise that when the clothes are available they will be completely worth it and I’m going to be proud of it.

What would you say to describe Crohn’s to someone who doesn’t have it?

… I’ll give you a big clue. The gut busters from Alien were based on Crohn’s pain.

It does literally feel like you’re being ripped apart from the inside.

Why are you going through embryo freezing? 

Because my surgeon believes there’s a chance of damaging not only me Fallopian tubes but also my egg sac’s but not damage my womb since my surgeon is going to do everything he can to make sure I can carry a child.

I basically think it’s really important to myself and Stuart to have a child that is genetically ours If we’re able to and preserving my fertility is one way to do that.

Can you get embryo freezing on the NHS for your condition? 

Apparently we could get embryo freezing on the NHS if either of us had cancer. However due to myself not having that we have had to pay £3,500 for embryo freezing.

How can you afford that? 

Basically myself and Stuart’s student loans are paying for it but I was able to get discretionary funded for £3000 of the money for living costs.

I think this should be enough for now! Thanks for putting up with these questions so far, check out part 2, coming out soon! 

So guys I won’t bore you anymore, any further questions you have please get in touch and I’ll be more than happy to answer them!

Happy Saturday,

Jen x

My Fall Favourites! 

Hey Crohnies and Lucky coiners,
For those of you who are following my health story, I’m still struggling majorly. It’s exhausting trying to keep all my hospital appointments, keep up in uni and run the business while going through the embryo freezing process. I promise I’m still designing and I have so many exciting plans coming up but the physical manufacturing is still a struggle at the moment. I’m still booked in for surgery in January and my health is just declining until then when hopefully I start to get better. As always I’m much more in depth with my health on my Instagram @CrohnieClothing if you’re interested in finding out more on a daily basis.

Anyway, since I’m out the house most days, be it for hospital or uni, I’m getting to wear my autumnal wardrobe much more! I’m going to show you some of my favourite outfits and the key pieces in my wardrobe this season.

Firstly I have the Topshop Jamie jeans (£45 but Topshop have a  10% student discount) that are ripped and have an extra high waist which is perfect for myself with an ostomy.

I wear them with my Primark Heeled Chelsea boots and my Asos Leather Look Jacket with Fur Collar.

Next I have my Asos Button Front Navy Floral Print Tea Dress (£12) I am going through a phase again where my jeans have made me leak constantly and I had to order some dresses and tights last week for uni so I didn’t get embarrassed in class after leaking everywhere on Tuesday and being in so much pain from my skin I couldn’t get out my car and needed my cousin Karen to come help me get in a bath because I was in a total state. 

I paired my dress with the heeled chelsea boots and my leather look jacket as above, some super thick Primark tights and the super thick scarf I absolutely love since it’s long enough to be wrapped around my neck but not too long to be worn open as a longer scarf which I do under my new coat…

If anyone follows me on Instagram you’ll be well aware that I got the BEST bargain coat in Primark. It is a Navy A-Line coat with Faux Fur Collar (£25). I had been looking on Asos for a similar coat that was between £60 and £80 so when I saw this I had to get it! I’m he type of person who has a jacket for every type of weather but I had a gap for a winter coat that was pretty and could be dressed up or down since I have either fancy coats or casual ones so this fits in with my wardrobe completely!

I also had to get a new bag for uni that had room for my laptop, notebook, stoma supplies, medicines and my diary. I was sick of buying cheap bags which broke after a matter of weeks so I decided to invest in an Accessorize bag. I know that it isn’t a lot of money if you’re working full time but £45 to a student is a decent chunk of money so I waited for a 20% student discount and got this gorgeous bag. I’m now 4 weeks in to uni and I would be lost without this bag! It has so many different pockets so there’s room for everything and I can keep my laptop and notebook separate to my water bottle and also separate from my purse and car keys!

I also went into Primark for this T shirt specifically. I absolutely love the feel of velvet. I find it so comforting and it is super soft on my sensitive skin and it was a total bargain at £6. I decided to get the claret red colour because it is perfect for autumn but it can also be worn under a Christmas jumper and made extremely festive for the Christmas period!

Another Primark bargain I found was this demon shirt which was only £5 in the sale! It is so comfy when you put it on for a lazy day and I like to wear it as below or buttoned up with a choker and my Ugg Boots!

Next I have a beauty product I can’t life without now. I spent months trying to get Kat Von D’s Lock It Foundation without paying customs fees and everywhere we went in Florida was sold out of shade 42 which matched my skin perfectly. I waited until it came here and it sold out until last week when it by luck was online on the Debenhams website! I love that this is a full coverage foundation like the one from Estée Lauder (Double Wear) but it is in such a pale shade that it matches my anaemic skin! It gives me a glow which stops me looking like I’m ill and rather makes me look like I have lovely fair skin. I even put this on when I had my rash in the picture below and it covered it up amazingly and for once I didn’t spend ages trying to blend it in to my neck! I love his with a brown/bronze smoky eye and a nude lipstick because it is so wintry and the brown colours really make my eyes stand out against my stark white skin.

Next up I have some more toiletry based items that I use lots and I’d recommend so much I had to include them…

Firstly I have Lush’s Daddy-O Toning Shampoo (£10ish for 250g) I actually saw a friend of mine try this out and it was incredible from the two pictures she posted! I literally rushed out to the shop to buy it and it is now my favourite shampoo ever. Plus it smells like Parma Violets which is another plus because some smells can be really off putting in shampoo for me since you literally smell it every time you move your head!

Secondly I have this amazing moisturiser. Anyone who has followed my story for a  while knows that I have really dry and sensitive skin. So much so that I had to go to my doctor about it because I am cracked everywhere and I can’t use many things in my bath unless it’s certain Lush or Imperial Leather bath stuff and I was silly and used a bath set I got for my birthday and my skin literally dried out an insane amount and I came out in a really bad rash (you can spot this in some of my vlogs where I talk about it!).

Dermol can be used as a cream, soap and even a shampoo if you’re having skin problems and after I posted about getting prescribed it I had SO many comments on Instagram from people who also love it and swear by it when they have any dry patches of skin or even any slight irritation!

Now I’m moving on to jewellery, I have some really key pieces that I never take off and I love them more than anything!

Most importantly is the locket I was given from Duncan. It is engraved saying “Always Your Bro Duncan” alongside other things he left for me to keep. I have only taken this off to wash and when I have had surgery because I feel lost without it. It’s my little bit of duncan I can take with me anywhere I go and I’m going to get it re engraved soon because I always rub the engraving when I get sad -and miss him so much so it’s actually starting to wear away the engraving now! I’m so nervous about getting it done because the last thing I want is for anything to happen to this necklace since it means the world to me!

Next I have my Thomas Sabo bracelet I got from my mum and dad alongside the angel charm for Christmas the year I got my ileostomy. They bought me the angel charm so it would watch over me while I am not well and it means a lot knowing the thought that went into this gift!

The other charms are the heart one that Stuart bought me last year for I think my birthday which is my favourite charm ever because it’s a part of Stuart I can bring with me wherever I want and it’s a heart, which girl doesn’t love a heart? And the final charm is the feather, I have a feather tattoo on my ribs with “she flies with her own wings” in Latin and I got it to celebrate my independence when I turned 21 and as a little reminder of how I do things my own way like always trying to stay in control with my treatment for my Crohn’s. Stuart saw me eyeing this up for months and I kept putting off buying it for myself so he surprised me with it last year for our anniversary!

My final piece of jewellery is my Mickey Mouse Watch we got in Disney World this year. I had a bigger Marc Jacobs watch which matched my charm bracelet but I didn’t want to wear it every day as it’s something I wanted to keep special as my parents got me it for my 21st birthday so while looking through the stores in Hollywood Studios I came across this kids watch which at the time was a tight fit but now I’ve lost a bit of weight it fits me perfectly with a few notches spare! I love carrying a bit of my favourite place with me wherever I go but I’m terrified I ruin it when I can’t get another til next year at the earliest!

Finally I have some shoes I can’t help but love…

My absolute favourite shoes I bought recently are my primark heeled Chelsea boots from the first picture but you’ve already saw those so I’ll tell you about my two other bargain purchases that saved me HUNDREDS of pounds!

First up we have my Chestnut Brown Ugg Boots in the classic calf height. I got these off of the Office Website in the sale at only £96 (instead of £140) and I got it while they had a 20% student discount which means I got them for £80!! I know it’s a lot of money but they are such an investment and I promise I’ll wear these every winter until they fall apart…

I also discovered the app Depop this month and I decided to buy some second hand Hunter Wellies in Navy for only £20! I saved literally £100! They are slightly worn at the heel but otherwise perfect and I got brand new hunter socks on the app too and those were only £5 for the red ones. I don’t have a picture of these yet because I haven’t had a chance to wear them yet since we’ve had surprisingly dry weather for Scotland!! I can’t wait to wear these on bonfire night with my jeans and parka coat so I can be all snuggle watching the fireworks and I have to get a peppermint hot chocolate to go with it!

Sorry for this being such a long post. I have so many favourite things but I haven’t even put half of them in here so if you like this type of post be sure to let me know so I can do so many more!

Anyway, I’m going to go to bed because it’s 2am when I’ve finished writing this and I need to be awake to post this at 9am!

Happy Monday,

Jen x

What’s Been Happening a Recently And My Favourite August Outfits! 

Hey Crohnies and Lucky Coiners,

Sorry for not posting in a few weeks, I’ve been really busy working on stuff for the business and also guest writing for PosAbility magazine and also limitless travel with 3 Rundown To Rio articles about the 2016 Paralympics (If you want to read the Limitless Blog posts click HERE!)

A glimpse of my PosAbility Article, available right now! 

Basically things have been pretty stable, I’ve not been admitted to hospital or anything and I’ve not had any major treatment so it’s a case of just muddling through until I get my next surgery which is a cyst removal and I begin Egg Freezing in case my big surgery in January makes me need IVF so it’s a lot to deal with at the moment since I’m really just waiting for my referrals and to actually start on the next steps.

My skin is very bad at the minute as I’m run down and I hadn’t had the right supply’s to go with my bag for a few days… It’s crazy how something so small can effect your life so much!

I’m really looking forward to being back at uni as I’m feeling like the summer holidays are so long and they’re really not productive… Even the reading list would be really helpful to me but that’s not available til the start of term.

Okay so now we’re caught up on my health, here’s a glimpse of what I look like right now… Lazy beyond belief!

Now some of you might have already saw this if you follow me on Instagram (I’m @Crohnieclothing and I upload stuff most days)

And here’s my run down of my favourite outfits I’ve been wearing this month!

This outfit I wore on a night out with Stuart and our friends and it was a great time, I felt so comfortable and supported, especially with my Comfizz Support Band I wore underneath! You can find this online here!! I swear by Comfizz now, and they’re run by the loveliest family who have the most beautiful reasons for starting now the company that has made me even more determined to support companies that have the products and who they help at heart!

My jeans are from Boohoo and the waistband goes to the perfect height, it doesn’t restrict my stoma at all which is something that happens often! Also my plunge cami from Asos is super soft and glides over my skin, bag and waistband like it’s not even there and of course I had my checked shirt because it was a warm night but I always feel the cold.

Next is my green boho dress with purple lace cardigan. I wore this to my hospital appointment with my surgeon about my big surgery we’ve planned for January. It was so comfy and was perfect for sitting around waiting on my doctors and drinking loads of tea.

Next is once again my plunge cami with my oversized spotty shirt which is another one of those outfits which looks nice but is super comfy and casual.

I wore this outfit out for dinner with my parents , niece Niamh and sister Caz! It was so comfy and this bodysuit is so stretchy it had no bother when my bag filled up which inevitably happened since I was out for dinner!

Next I was in all grey and black for a lazy day with my Calvin Klein bra, wide neck jumper, Ivy Park leggings and super cozy socks!

I had a bit of a swollen tummy here so I teamed my ripped jeans with a cami to hide it, a checked shirt and my uggs since it wasn’t the nicest weather outside.

Next I just had some black high waisted jeans with a cropped jumper which had an open back and decided to get my belly out!

This outfit is one of my favourites, a plunge cami, black distressed shorts, a bat wing cardi and a pashmina! I decided to match my belt, bag and uggs so I accessorised to the max!

Next was a very similar outfit with an all lace vest top which I wore yesterday. 

Finally I got a brand new dress from Primark for only £5 the other day and since the weather was awful I wore it with a thick pair of tights, boots and a cardigan! It’s perfect for holidays but I thought it would brighten my wardrobe and would be perfect if there’s any nights out or anything in the coming weeks/months!

As I said I post all of this daily on Instagram so if you’d rather daily updates it’s maybe best to follow me there!

Have a great Sunday!

Jen x

My Big Secret. Infertility, Egg Freezing and Will We Ever Have a Baby? 

Hey Crohnies and Lucky Coiners,

As a lot of you know if you’re following me on Twitter, Instagram or watched me on YouTube in my introduction video (if you want to follow me now it’s CrohnieClothing on all of them) that I have a secret. I’ve spoke about it a lot recently and I’ve in all honesty been terrified to tell anyone apart from immediate family for the past few months. I’ll have to explain this fully so it may be a long post but as always I’ve promised to be open and honest with everything so it’s hard to condense it all.

Basically I’ve been bleeding a lot from my bum when I go to the toilet, so much so that I sometimes bend over and it can come out and ruin my underwear or I need to do a dangerous run to the toilet to avoid it coming out. It’s been a whole year since this happened for the first time which means the remaining intestines inside my bum are in a bad way, meaning they need to come out. This wouldn’t be too bad if it wasn’t for the severity of the surgery and also how it will effect my fertility.

In March I found out the surgery I need will leAd to me getting what is effectively a “Barbie Bum” meaning my whole sphincter and remaining large intestines will be removed and after how crazy bad my insides were in my last surgery (organs stuck together due to scar tissue and adhesions including my intestines falling apart while inside me) this one will be a big one. I’ve been told that this surgery, due to how much scar tissue/damage will be done around my uterus and reproductive system I have an extremely likely chance of becoming infertile during this surgery. 

I’m pretty much left with a few choices surrounding this I either sign up for surgery right now, give up on having children in case I am ridiculously lucky and manage to have some kind of miracle pregnancy in the future. We could also have a baby right now, I could get surgery once the baby is born and be effectively missing from their life and in no position to be a mother for months while recovering and leave a huge burden on Stuart or I could also decide against the surgery that I really am starting to need and just progressively get worse for the time being and the surgery would be done as a last choice and when I’m an emergency case which is not what my doctors would recommend. I’m really  heartbroken about this because it means I may never get to be a mother genetically and it’s really freaking me out. 

I was also told about next week discussing the chance to freeze my eggs so they could be implanted in myself if it’s viable and potentially a surrogate (however the surrogate idea is something I’m strongly against due to not wanting a third person being involved in something such as this and also simply not being able to afford the 10,000-15,000 that is usually paid to cover their expenses). It’s taken so long to be able to talk to you all about it because it’s only really now I’m not going to start instantly crying when it’s brought up and I’m going on Thursday with Stuart to see the surgeon so I need to be able to face the problem head on. 

As for our decision, right now we really have no idea what to do because all the options sound bad to me. Who ever thinks at 23 they’d have to face the prospect of not being able to have their own child, especially after doing everything they were told to so they would be able to have a “normal” life. It’s absolutely heartbreaking if I’m honest and as it’s probably easy to tell we’re in this horrible purgatory stage where we have no idea what’s happening and even though we’ve had months to try and decide we still can’t. I guess we’ll just need to talk to my surgeon and the fertility doctors to see what we should do but in all honesty it seems hopeless at the moment. 

I’m not writing this for sympathy, I really hope this doesn’t turn into people treating myself or Stuart differently once this comes out but I do just want to spread awareness that IBD is not “like IBS” and is actually a really serious autoimmune disease that can affect any part of your body from your head to your feet. I know I’m a really severe case what with having an ileostomy, this other problem with needing more surgery and how bad my symptoms are daily but this is something that needs a cure and I really hope that in raising awareness on this disease it’ll lead to more funding for charities such as CCUK and Cure Crohns and Colitis. 

Thank you for reading,

Jen x

What NOT To Say To Someone With An “Invisible Illness”

Hey Crohnies and Lucky Coiners! 

I hope you’re all having a lovely weekend, I’m still recovering and taking it easy after surgery because it’s surprising how frail I feel right now, I’ve even somehow managed to catch a cold on top of everything… Typical! 

Anyway, one thing I’ve always noticed when I get unwell is people either don’t know what to say to me so don’t talk to me at all or talk away but can sometimes unknowingly be offensive, after having Crohns for the past 10 years I’m pretty used to it now but I’ve thought of some of the worst things that are said when I’ve been not well and how to combat those by changing your wording slightly…

“Oh right you’re not well AGAIN?” 

This is pretty sure to be the number 1 way to get an angry response. I know that I am personally very defensive when this question is brought up time after time. It makes us feel guilty for being sick, since it’s happened enough that you have noticed it and seem to be inconvenienced by our illness. Try saying instead, “I’m sorry to hear you’re unwell. It must be tough having a flare up.” – this is a much kinder way of acknowledging the illness while not making us feel guilty for having our illness/disease and also you don’t sound like an absolute tool for being so insensitive. 

*farts* “haha, oh it must have been (insert unwell person’s name here) who did that, definitely not me” 

Look, this one is plain mean, no one likes a dick and if you say this you’ll definitely come across as one. I can’t count the number of times someone has thought it’s been funny to blame their farts on me since I have a stoma and I can’t control their noises/farts. TRUST ME this is so embarrassing when it is actually me but I will admit it since what the hell have I got to be ashamed about but don’t make me and everyone else you’re around uncomfortable at your shite joke (aha literally shite). Instead say, “pardon me” or “oooops sorry, better out than in!”. 

“Do you mean we have to change our plans just because YOU’RE being difficult”

It’s not called being difficult, it’s called having an uncontrollable disability that means maybe we can’t eat in certain places/ do certain strenuous activities/ go out at all and have to stay in but in saying this you’re not only making us feel guilty, you’re also showing yourself in a bad light as someone who is too self obsessed to be considerate and if you ever need some plans changed you’ll look like the biggest hypocrite. Some of my best days have happened when plans have been cancelled or changed to help accommodate myself or others who have been unable to do the originally planned activity and has led to some of the best meals in different restaurants, movie nights in instead of trips to the cinema and even watching everyone else do activities like tobogganing when I wasn’t feeling up to it. Instead say, “cool we’re staying in for a movie? I’ll bring the popcorn!” 

“Don’t lie, you’ve been on a diet haven’t you? You’re looking very skinny” OR “someone was good to themselves at Christmas and put on some pounds!”

If we happen to mention that we’re annoyed our clothes don’t fit due to weight loss or weight gain we just want a sympathetic ear, not some harsh comment. Fat/skinny shaming is not okay full stop. Just don’t even go there. Instead say, “that must suck, but if there’s ever an excuse to go shopping now is it! Let’s go!” 

*Deafening silence*

Don’t ignore us, we’ve been through a lot and the last thing we need is to feel ostracised. Be our friend and please talk about how Johnny didn’t text you back or that new amazing dress you bought. Sometimes we just want to deal with the everyday struggles of people instead of the daily huge task of dealing with our illness. Give us a chance to feel like one of the girls/guys for a few hours, God knows we need it and if you do try to initiate a conversation but we’re too tired or unwell to reply please don’t get the hump about it, give us a few days/ a week before you try again. We’ll appreciate it. Instead say, ANYTHING. The more trivial the better. 

“But you don’t look sick…”

Well you will probably get the reply of, “and you don’t look like a doctor so maybe we should just leave it at that”. The fact is most people with illnesses or disabilities don’t show any outward signs of being unwell at first glance and you saying they don’t look sick isn’t a compliment but rather feels like a dig for not “looking unwell enough”. Trust me if you ask any of our team of doctors/ nurses/ psychologists/ surgeons/GP’s then they’ll be the first people to tell you otherwise because they’re qualified to do so, unlike you. Instead say, “I know you’re really not well but you look fantastic at the moment and I’d never have guessed you have your illness.” 

I for one know that your friend will appreciate this so much so long  as you just have a little bit of consideration for them. I’m not saying this because any of these have happened to me recently but since I got disagnosed I’ve had each one multiple times and I thought this little guide of 5 simple ways to be a good friend would be handy! 

Hope you’re having a fab Monday! 

Jen x 

So I Had Surgery This Week… What To Do When You Have An Infection and How To Avoid Sepsis.

Hey Crohnies and Lucky Coiners,

It’s been a bit of a crazy week to say the least, that abscess at my groin came back with a vengeance and I ended up needing to get it surgically removed on Saturday! I have to admit that after having this done for the fourth time means I’m a bit of an old hat at getting them done but it still doesn’t help when you’re in pain and feeling sick due to the meds you’re on and obviously since just having had some minor surgery. 

I have to admit this time was nowhere near as bad as some of the others I’ve had removed as it didn’t need packed after the first day but it’s obviously still an open wound that doesn’t get stitched up and due to being at my groin pretty much every way I move hurts. Although faced with the alternative of having recurrent abscesses that require 2 weeks of antibiotics to settle for a month before flaring up again and the increased risk of sepsis, I’m really glad I went to A&E to get it sorted.

As many of you know I had sepsis last year after an abscess in my abdomen got a bit out of hand and led to blood poisoning, after doing some research I’ve realised how lucky I was to actually had my diagnosis in time and to be here today because it is notoriously hard to diagnose and often isn’t discovered until it is too late and can lead to organ failure and even death. 

According to NHS Choices, the symptoms of sepsis are below and if you experience these you should definitely call NHS 24 on 111 or if you or someone you know is in septic shock call 999.

Early symptoms of sepsis may include:

  • a high temperature (fever) or low body temperature
  • chills and shivering
  • a fast heartbeat
  • fast breathing

In some cases, symptoms of more severe sepsis or septic shock (when your blood pressure drops to a dangerously low level) develop soon after. These can include:

  • feeling dizzy or faint
  • a change in mental state, such as confusion or disorientation
  • diarrhoea 
  • nausea and vomiting
  • slurred speech
  • severe muscle pain
  • severe breathlessness
  • less urine production than normal (for example, not urinating for a day)
  • cold, clammy and pale or mottled skin
  • loss of consciousness

I was lucky enough to have a team of doctors, surgeons and nurses (Hi Susan and Louise!) who are constantly keeping a close eye on my health and were very quick in telling me to go get it removed this time and in diagnosing me with sepsis last time, you might not have that kind of support and neither may your family and friends so it’s always wise to be aware of the signs and symptoms of such a deadly blood poisoning and know exactly what to do if you end up in that situation. 

I only spent from Friday to Sunday in hospital and got out with just some antibiotics and painkillers, alongside some stuff to help clean and dress my wound each day. (Of course this is something I’m not a fan of because there’s nothing sorer than dry plasters next to an open cut!) 

Due to being fasted, having a general anaesthetic and all my meds, it’s made me struggle to eat much and I’ve already felt much more confident in my clothing choices which is great as I’m still not quite at a point I’m happy with my weight. I’m going to try to keep making good choices when I do eat too so I don’t put the weight back on once I feel better. 

I am sadly still having lots of problems with my rectal stump with passing blood and clots so it’s looking nice more and more likely that I’m probably getting another surgery to remove that and get a “Barbie butt” in the near-ish future so I think I’m going to have to get used to not feeling my best for now. Please bear with me in terms of the business because I’m feeling so crappy that I’m really struggling to do anything at the moment but I promise to get back to work as soon as I’m ready and make  CrohnieClothing and Lucky Coin for CrohnieClothing  the best possible quality and trends I can. 
Much love as always,

Jen X

P.s. Enjoy this picture of my out my chops on morphine, it makes me laugh! 

    Outfit Catch Up and A Potential Future In Vlogging! 

    Hey Crohnies and Lucky Coiners,

    Long time no blog and I’m sorry, it’s been  another few weeks where life takes over and you can never seem to get enough hours in the day… 

    I was back at the hospital last week visiting my IBD nurses because I’m passing loads of huge blood clots from my rectal stumps, it gave me a big fright a few nights ago so I had to book in pronto to get it checked but luckily my bloods are alright and I’m just waiting to hear back from my consultant about what needs to be done, if anything because I’ve been plodding along with the blood for over a year now but it’s always a fright when it gets worse! On top of that I ended up with some random pain in the top of my stomach that have been coming and going all weekend so I’m not sure what they are but I was on the phone to nhs24 most of Friday night and resulted in a “take some painkillers and a hot water bottle” and I have to say it helped loads but it keeps coming back so I’ve been on pain killers all weekend which is never fun. 

    Right now we’re past the boring bit about my pretty average (for me) health lets do an outfit rundown for some of my favourite outfits of the last wee while, where I can I’ll add in where I got things from with the price and also how it works with having my ileostomy! 

    Firstly here’s what I’ve been wearing when I’m going a wee walk in the hills with my family, I’ve been determined to get some more stamina and also keep fitter since after Florida I’ve been in a better place than I have for a while with being able to walk a bit further…

    My leggings are of course from the Beyoncé, Ivy Park range at Topshop (£40) and as you all know I’m obsessed with these, they’re super thick and supportive while not being restrictive on my bag and the style I got are the full length high waisted ones which means I don’t have to do the awkward leggings shimmy to pull them up during the day. I also have a grey pair because I am just so obsessed it’s unreal. These are what I wear about 70% of the time just now since I’m a lazy sod! With these I’m wearing my Adidas ZX Fluxx trainers in limited edition “Lights” from Asos (£50) I love these because my sister Caroline has a pair (you may know her from meonagoodday.com because she’s not only fabulous at picking trainers, she’s also seriously into her health with just completing tough mudder, training for a half marathon and to walk the Weat Highland Way alongside eating a mainly raw diet!) these trainers feel like walking on a cloud thankfully and are super cute and are really supportive and stop my ankles giving way like they normally do!

    My hoodie is basically your run of the mill H&M (£12 ish) hoodie but this has been with me for almost 2 years and been washed constantly but still is extra soft on my sensitive skin and hasn’t faded at all from when I got it!

    And of course on any family day out there has to be a selfie! 

    Next is more of my everyday going out clothes and by going out I mean mainly to either Stuart’s or to asda since I’ve been so tired these days…

    This outfit is basically some black high waisted jeans from H&M (14.99) that are actually really stretchy while also being a very thick denim, I never normally find there’s a stretch pair of jeans that isn’t very thin so these are right up my street. They’re also surprisingly soft for what they are and even the waistband seems gentle on the skin round my stoma tape which normally peels off when it’s rubbing against clothes all day. I also teamed this with a Asos Plunge Lace Cami (£25) and this is the buy of the summer, the comfiest top I’ve ever bought that is so soft it’s almost a silk and is also so flattering. I love it so much I wore it in an outfit still to come for my cousins wedding! 

    This is another top I teamed with the black jeans, a pair of amazing peep toe heels from BooHoo and my trench coat. Absolutely kicking myself for not getting a picture of this full outfit but the top is £17.99 from New Look and basically had the black and white vertical Pannels then at the very bottom a light pink horizontal one. I LOVE this top because it’s something I’d never normally wear buy for an afternoon tea Hen Do it was perfect! It’s also opened my eyes to being able to wear lighter colours in a top and have more confidence in not having my bag leak. The only downside was it creased very easily when I was driving so I’ll need to find a way to combat that. 

    Next there’s a picture of what I wore to the Ideal Home Show, this outfit was so comfy it’s unreal plus I made sure to wear a full skirt so I could take advantage of all the free samples and junk food I managed to eat that day! I tucked an oversize khaki chiffon t shirt from New Look (£12.99) into my Primark Pleated Pleather Skirt (£10ish, this was years ago!) and teamed it with some extra thick tights, some socks and some black suedette boots from Primark (£8) with me little grey cardigan from H&M also! 

    Last but not least here is my outfit from yesterday at the new Mr and Mrs McKeown’s wedding! I wore my Asos Black Plunge Lace  Top from above with a pleated teal midi skirt from Joy (£15 in the sale last summer!) and also a wrap from Primark (£5) and the most gorgeous stewpot Sandals also from Primark (£20). Since I had so much stuff to carry I also took my patent Oversize Ted Baker Bag I got for my 21st! It was a wonderful day for a beautiful couple and everyone looked stunning, especially Lisa the bride! 

    So after my rundown of my recent outfits I have an idea I’m toying with for the moment… I’m considering Vlogging my daily life so alongside my posts on here there will be more regular videos posted on YouTube of how life really is when you’re living with Crohn’s and an ileostomy alongside everything else going on in my life from trying to run a business at 22, to what me and Stuart do during our days (we think we’re hilarious, you may think differently) and also bringing you along to uni, shopping, hospital appointments and even let you in on some previously unblogged experiences such as surgery and recovery since all of which will be in my future! If any of you have any comments or have any idea what camera I should use for all this please let me know! 

    So there you have it, one long blog I’ll be very surprised you read until now! 

    Have a great Sunday,

    Jen X 

    Travelling, Delays and Cancellations With Crohn’s Disease And An Ileostomy

    Hey Crohnies and Lucky Coiners,

    I hope you’re all doing well, I’m currently lying in bed absolutely exhausted from travel mishaps and jet lag.

    I know this isn’t exactly relevant to a clothing blog however I feel it’s important to document what’s happened to myself and Stuart over the last few days while travelling home from Florida. 

    As possibly some of you have saw, I was interviewed about our experiences in Orlando during the Christina Grimmie shooting and also the Pulse Nightclub mass shooting for the Clydebank Post which you can read Here. At the moment I do not feel like I should be posting pictures of being happy in and around the Orlando area in Disney and Universal due to there being so many families in mourning over such horrible events so I will blog more about my holiday in the coming days/weeks when it isn’t so fresh in our minds and there has been a time of mourning for those victims. 

    I do however feel it is appropriate to raise awareness about how unprepared I felt British Airways was to deal with having a passenger with additional needs such as mine, especially when those needs aren’t visible when I’m wearing clothes. Firstly I would like to point out that no public bathrooms (especially airports) are suitable for someone changing an ileostomy appliance due to there being no single place to put any of the equipment needed to change the bag. I know I have a lot on my plate at the moment but I am determined to try and get all disabled bathrooms or even normal cubicals in public areas to have a small shelf in which people can place not only stoma bags, wipes, flange extenders etc but also those who may need to change sanitary towels or tampons or even be a place for people with diabetes etc to inject their medication too because I for one am still worried I may have an infection around my stoma due to having to change my bag so often in unsanitary conditions because I had to try and place all my equipment on top of toilet paper holders, hanging out my back pack and even placed on my thighs just so I didn’t drop things and have the risk of infection even greater because the skin around my stoma is still an open wound and infection can very easily set in and in extreme circumstances lead to sepsis. 

    This may be something minor to most people who can multi task or don’t have these additional needs but since there are so many different parts to the ileostomy it has left me exasperated, in pain and so stressed out that I have been more emotional than anyone should be when they go to the bathroom. It is a very easy solution to a problem that in this day and age seems crazy when we are so aware of equality because I for one do not feel equal when I go into a disabled bathroom and find nowhere to put any of the things that I need for this disability. 

    So okay the toilets are bad enough but it’s something I’ve dealt with for a long time now and I know it’ll take time before any changes come in place there, however, we didn’t have a great experience with British Airways that is probably easier to solve if there are staff who are compassionate to those in situations like ours and have a means of dealing with that. 

    Basically we had a stop over in gatwick airport on our way home from Orlando of 3 hours, this is something we planned for and knew what to expect however when we arrived at Orlando airport (4 hours early for our flight to be safe) we were left waiting in a queue for half an hour before we got “checked in” this again was expected so I sat on my case and expected to be through the process fairly quickly after that and be on our way to security and lunch but there of course was a problem. The man checking us in just told us he couldn’t find any of the Scottish passengers bookings on the system and therefore we had to wait in a separate line to deal with the problem. This in itself didn’t seem minor to begin with but took a further 1 hour 30 minutes to get us seen even though there was only 1 family ahead of us. Due to having to sit on my case/stand for so long my bag was definitely acting up and another passenger told me that there wasn’t a toilet nearby and it took her 15 minutes to get there and back to the queue so there was no way I could go on my own when we still had cases and I am very nervous in new places without Stuart there in case I do end up with a leak that causes a mess or even to just hold my bags because I can’t do that much since I get so tired so quickly in comparison to completely able bodied people. 

    Once we reached the front of the desk I felt it was very important and also embarrassing that I had to make the manager at the desk aware of my Crohns/ileostomy as I had an extremely full bag and also didn’t know when we would be able to leave for a bathroom. The staff here offered no help in the situation and we’re only interested in the situation that had occurred being basically that our flight from gatwick to Glasgow had been cancelled so we weren’t offered any options other than they would be sending us by bus to Heathrow airport where after an extra 2 hour delay on top of our 3 hour stop over we would be getting a flight home. 

    This led to immediate panic as I had used to many ileostomy bags throughout the holiday I was running low and I was desperate to get home and be able to get to my new delivery of supplies. I asked then if possible I could have a seat near the bathroom and was told we would however it never actually materialised. 

    This was by far the most stressful thing to happen on the holiday because due to the delay it would mean we were travelling for over 25 hours. I’ve never before felt quite so isolated with my illness but Myself and Stuart both thought it was completely disregarded since I wasn’t in a wheelchair and I am not physically any different to anyone else when I’m wearing my leggings and a top. 

    Long story short we ended up getting our first flight to gatwick and were sent to the British airways desk after we had to collect our luggage (this was not going to happen if we went from gatwick as planned so on top of feeling tired, in pain and stressed I also had to try and wheel my suitcase along with me). The lady at the desk again was informed of my condition and didn’t even acknowledge it, she just gave us vouchers for a national express bus and a £10 food voucher (thus kind of felt like a slap in the face at this point) I asked if we could even have access to the lounge in Heathrow just to be near a toilet and be able to sit down in peace and quiet because by this point I am close to tears from exhaustion and the pain caused from my bag leaking while we were at the airport in Orlando in the queue and the leak burning my skin so badly but was told simply that wasn’t possible. I really wouldn’t care where we would have went so long as we could have had somewhere close to a bathroom to sit but not once were we offered that and even the bus to Heathrow had a toilet which was locked so I spent the journey trying to avoid it overflowing and even had to contemplate emptying my ileostomy bag into a carrier bag while we were travelling which is humiliating! 

    Due to all of this as you can imagine I didn’t get a chance to be relaxed enough to sleep so I had been awake for over a day by this point and was travelling not for about 20 hours by the time we arrived at Heathrow. We then had to sit around for over 2 hours before we could even check in. I have no way in my mind to justify them having us sit on hard chairs with no toilets near the chairs in terminal 5 of Heathrow may I add when they have lounges available. I don’t want into the lounge to take advantage of the system or get free food/drink but literally being able to be near a bathroom to wash up and take my time without there being queue of tutting ladies needing to go to the bathroom waiting on me finishing up and have somewhere slightly more comfortable and quiet to sit and just collect myself would have made the journey go from unbearable to even potentially pleasant. 

    Finally we ended up getting checked in and had to wait another 2 and a half hours at the gate and by this time I was like a zombie before our flight home and finally getting to sit down and relax. I have to say the whole experience has made my very wary of travelling again for a long while as it has left my skin raw and cut, I’m still exhausted and scared that my skin is once again infected (I’m off to see my GP about this today so hopefully I’ll be just on another course of antibiotics and I’ll feel a bit better). 

    I know this seems long winded and also very ranting but I feel it’s so important that big companies take into account individual circumstances, especially when you’ve paid thousands of pounds for a holiday. I just wish more than anything at the moment that I didn’t have my stoma as it was a serious problem while we were away however I am completely aware that this ileostomy saved my life so I can’t take for granted how lucky I am to be in the position to be able to write a long winded and ranting post, especially when many others don’t get the chance. 

    I promise I’ll post a more upbeat blog soon. Thank you for reading this and remember you can’t judge a book by its cover even if it is in a fashionable one cos inside its pages can be torn. (I think I just tried to use a metaphor that may not have worked but it’s staying since it sounds profound haha!)

    Jen x