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

    Disney World With An Ileostomy; My Experience So Far

    Hey Crohnies and Lucky Coiners!

    Hope you’re all well and I’m actually blogging to you from my room in Walt Disney World’s All Star Music Resort, Orlando, FL. Since I’ve been here 1 week I thought I’d give you all a little update on how things are going and what it’s actually like being me on holiday with my stoma. 

    Myself and Stuart have planned this holiday for almost a year and first things first I have to say how amazing Stuart’s been through everything and how amazingly he deals with me being unwell! I’m so lucky! 

    I wish I could tell you all that I’ve felt amazing during our time here and that my Crohn’s hasn’t impacted our holiday in any way but I’ve always promised to be honest with you guys and I have to admit it’s been tough, REALLY tough. I don’t know if it’s just me who goes through this but due to my skin being so fragile and sore and weeping that I’ve leaked at a minimum of 4 times every day so far and it’s really draining. (I’ve also had prickly heat so bad I had to go get a steroid cream to sort it out because I clawed my thigh so hard I have a huge bruise!)

    Don’t get me wrong I’m having the holiday of a lifetime and I’m loving every second of it and I have been alright to go on every single ride so far thanks to the Disney World Disabled Pass which has been invaluable while we’ve been here. It basically allows us to arrive at a ride, scan in to say we want on with a cast member then means we can go sit down and wait or go get something to eat/drink during the total wait time minus 20 minutes then come back and not have to wait for more than 10ish minutes to get on the ride! Thank you Disney and Universal!! 

    I’ve actually found that the rides are fine with my stoma due to going to the bathroom before we ride and also the face that the force of the ride keeps you in your seat so you don’t press on the bar with your tummy. I have to stress that you go to the toilet though because I had a very risky time on the 7 Dwarves Mine Train as we had just left dinner and were about to leave the park as it was closing but got the chance to ride. Going on that so soon after eating meant that I had a very full bag on the ride and it was all I could think about during the whole ride! The only one that hurt a bit was The Mummy in Universal Studios due to it having some really harsh stops but I’d say that’s not bad out of all the parks we’ve been to so far.

    One things for sure I’ve lost a bit of weight while we’ve been here probably due to a combination of stress, being too hot to eat much and having more walks than I’ve done in years! I feel a lot more body confident as no one has commented on my bag or even looked at me funny because of it and also because my clothes fit much better already. It’s a definite plus side, so much so that I’ve even risked sitting by the pool in a bikini and even changed it once when we were at the pool and is not have made it to a toilet without my leak covering me. 

    There are really only 2 things overall that would make this holiday even better, never mind that I struggle to walk about because some unfit people can’t walk that far either… I wish more than anything I didn’t have this stoma because it would be amazing to not have to worry about leaking or having supplies with me everywhere but if it didn’t leak that would really help with the overall experience of the holiday because I fee like especially the first few days were a tiny bit tainted due to how bad my skin has been. I think I may be getting into a routine now that’s helping matters and involves LOTS of stoma powder and rushing to a bathroom to check for leaks every hour to hour and a half which has been time consuming but also making me feel more comfortable! 

    Now I’ll tell you all about the food here. It is beyond AMAZIG. We’ve had everything from Sprinkles Cupcakes…

    … To the best steak of my life…

    … To lots of Micky Shaped Food…

    I’ve ate basically everything I could imagine (we literally just spent $30 on Lindt chocolate) so it’s no wonder I’ve been bagged up and had a few blockages which left me a bit sore for a few days but really can you blame me when I’ve been allowed to come to the happiest place in the world with no adult supervision? I have a feeling that after we leave and the treats run out back home I’ll look like Barney Gumble when he finishes his pint. 

    I’d definitely say that if you have a stoma or IBD don’t let anything stop you from doing what you want, it’s definitely trial and error but you will get through it and be surprised at how well you’ll get on even if you’re not physically well. Everyone has things to deal with and this is something you can handle even idiot does get you down occasionally since you’re only human! 

    Also woo CrohnieClothing is now international! 

    I’m off for a nap now before dinner, a day outlet shopping has tired me out so much! 

    Have a nice night!

    Jen x

    Where Have I Been? Abscesses, Race For Life, Exam Stress and Yay T Shirts Are Available Now! 

    Hey Crohnies and Lucky Coiners! 

    Im sorry I’ve not been around much recently, I’ve had a few crazy weeks I have to fill you all in on… 

    Well firstly as you all know I’m heading off to Florida soon, 3 days to be exact since I always am, but in typical Crohns fashion I ended up with a huge groin abscess last week which I now know needs surgery but I’m managing for now to hold off surgery thanks to LOTS of antibiotics. Many of you know I have a history of some pretty severe abscesses before and they always happen over summer and leave me normally unable to walk about for a month after surgery since the wound gets packed daily for 6-8 weeks and it’s pretty painful. 

    Lucky me as always I had my abscess at its worst during the week I had my 2 exams of this semester… That was not fun at all. I’ve been in a lot of pain and was pretty out of it on tramadol but I did manage to get in for both exams however I do think I might be having some resits in August because of it! However thankfully exams are over and my abscess popped on Friday last week and I got to celebrate finishing my first year at uni by having a lovely afternoon tea with Stuart last week! 

    Thanks to the abscess popping I’ve not been in as much pain and was even able to take part in the Race For Life on Sunday Morning at Glasgow Green, I did it in just over 1 hour with my family and friends and we did it in memory of Duncan who I know would be so proud of me for managing to finish cos at one point I was convinced id need to take my wheelchair along to the race! 

    Here’s my family who took part in the race for life! My mums wee hand is too cute! 

    I’m also very lucky to have such amazing best friends who also did the race wit me and we all wore our Lucky Coin tees! Thank you Rach and Amanda!!

    After the race I have been absolutely wiped out, I’ve never been so tired in my life!! Which is why it’s taken until now to get the Lucky Coin and Crohnie Tees on the website but I’m very happy to announce you can buy them on our store HERE!!!

    You may not hear from me too much over the next 2 weeks when I’m in Florida but I’ll do my best to blog! 

    Happy long weekend,

    Jen x

    CliniMed Stoma Supply Review and a First Glimpse at My Stoma

    *This blog contains an image of my stoma some younger children and people who do not want to see should avoid.*

    Hey Crohnies and Lucky Coiners!

    I hope you’re all having a wonderful weekend. Mine has been spent indoors studying since my exams are just over a week away. On the plus side I have had a lovely delivery by Clinimed and SecuriCare who have asked me to do a review of their stoma supplies such as barrier films of various kinds, adhesive removers and even an ostomy deodorant and it’s all in the perfect travel bag!

     This was my wonderful delivery with a lovely note too…

    Firstly I’d like to show you all a picture of what my stoma looks like at the moment. I have some severe issues with dermatitis and also with my belly button getting infected (pretty much constantly for the last year). I do apologise if I am making anyone feel uncomfortable but I completely believe that this should no longer be hidden and I am finally feeling brave enough to actually show you all what I contend with on a daily basis. I am definitely not ashamed to have an ileostomy. Let’s stop making poo a taboo.

    Since my bag needs to stick I have a lot of problems with finding different barriers and have tried thousands of sprays, creams and even steroids without any improvement whatsoever… Until now. I have to say that CliniMed you have been my life savers.

    In the bag I recieved a collection of the LBF skin barrier items. I have the spray, samples of cream, wipes and also swabs pre soaked in the barrier film. This has been the best discovery I have had to date, the whole range dries on your skin in less than 10 seconds, perfect with an ileostomy which works constantly. It is also completely pain free which is something I adore about them and also are very easy to apply especially with the pre soaked swab. I am completely converted to these and I’ve actually almost used my whole supply so I’m down to just the spray until I get these added to my perscription. I definitely recommend these especially if you have sensitive skin or are prone to leaks as it really does protect your skin and after the last week I am now starting to notice the first improvements to my skin in over a year!

    Secondly I also recieved these medical adhesive remover sprays made by Apeel. These are fantastic, especially in the early days of a stoma where your skin is extra sensitive and removing the bag can be extra painful (you never realise how many thousands of tiny hairs you have on your tummy until you have to basically wax them off! My favourite has to be the spray because it works like a dream and your bag will peel off painlessly in less than 5 seconds. The wipes are great too but the rubbing can lead to sticky bits going on your hands so I’d recommend having a hand sanitiser close by so it doesn’t stay on your skin. Although if you have a stoma chances are you have a months supply of hand sanitiser always to hand! The only downside to these are they are alcohol based and dry out my skin a lot so I tend not to use them for my stoma but I do use them when I have plasters on elsewhere on my body etc.

    I also got the chance to sample the Limone Ostomy Deodorant, this was one I was very sceptical of at first because I have to admit poop smells bad but there’s nothing worse than a fruity covered poop smell! This was really surprising because with 1 spray I did find it had the fruity poop smell but with 2 it almost completely got rid of the smell and actually smelled like air freshener. It wasn’t too strong either which was great and this is perfect after eating foods with a strong smell or if you’re on antibiotics which can give you a horrid smell from your output.

    I also got a lot of these in my bag too, they’re called Moroform and are a sachet of powder that is used to thicken up the contents of the bag when it is particularly watery. You just empty it into the bottom of your bag and it turns into a gel like substance which is much easier to clean up than a very watery output, especially one during a blockage. Everyone should have some of these on hand with an ileostomy as they can be very helpful in stopping your bag fill up too quickly like it would if it was watery and make it much more manageable and like the expected thickness of output.

    Overall I have to say this was one of the best bags of tricks I could imagine and I plan on taking the bag with me on holiday to Florida at the end of the month. I also plan on filling it up with lots of extra stoma supplies to be kept in the bathroom in our hotel room as it has a great hanger for over doors and with its 90 degree table like opening it makes a very handy shelf to put your supplies on during a change!

    I can’t thank CliniMed enough for having the chance to review these items as they have been very eye opening and have even changed how I deal with my ileostomy on a daily basis!

    I hope this was useful to some of you and thanks as always for reading!

    Jen x

    Ivy Park Review 

    Hey Crohnies and Lucky Coiners,

    As always my life is crazy busy and I’m struggling to not only find time to get things done but also the energy, my skin round my stoma is acting up more than usual but I would be lost without some of the amazing skin barriers I got recently in a bag of stoma products I will be reviewing. Thank you to Clinined for sending the stuff over because it’s came at the perfect time for me! 

    Some of you may have noticed my hair has changed once again as I got my weave removed and the awful black colour taken out of my hair and I’m now back to my natural colour of a dark blonde that is definitely bordering on being ginger! I have to give special thanks to Cree from Mia Strada for helping get me on my way to being blonde before Florida and having one marathon dying and bleaching session last week, I can’t believe the miracle she worked! 

    It’s now only 4 weeks until I go away on my first proper holiday in a decade to Florida with Stuart and as always the clothing is my number one priority. I’ve been a massive fan of H&M extra thick leggings since my surgery last year however with some major help from Beyoncé and Topshop that has all changed! 

    These are the Ivy Park leggings in mid rise, full length in the grey colour (£40, Topshop). I was really worried the hype about these would be far too much and there would be no way the actual product would live up to it but I am ridiculously happy to say I’ve been proved wrong! I recently lost 8lbs after eating healthy and it seems to be keeping off even now I’m back on an exam diet but I’ve been so self conscious about my tummy and my thighs, however in these leggings they support you and hold you in slightly without being restrictive and I feel better in I have in a long time! I’ve definitely found my traveling outfit.

    I love the supersoft material used in the leggings and the amazing quality because these leggings may be expensive at £40 but I would expect them to be double that for their quality. I’m already planning on buying the black high waisted ones and I can’t wait to get these too! 

    Basically here is my outfit yesterday …  

    Of course I need a picture with Stu because with exams I’m hardly seeing him and I am definitely a clingy girlfriend who is not dealing well with the alone time! 

    I was wearing my Ivy Park leggings with a Primark light grey zipped up hoodie (£7 in store only) and my leather jacket I got for Christmas from Asos (£35 but possibly sold out as from A/W collection). I wore my white leather converse with this outfit too and it was perfect for lounging about and also for heading into town to find a new foundation then having a lazy pizza night with Stuart because let’s face it, eating some of your favourite foods really does make you happy! 

    Happy Thursday!

    Jen x