Kiss And Cry. My Thoughts.

Hey Crohnies,

Hope you’re all doing well and enjoying your weekend. I’m having some pretty irritating surgery complications again with my Proctectomy wound being pretty badly infected. I know it’s just another step in my recovery towards getting better but it still sucks… a lot.

While I’ve been spending my time trying to hit 10,000 steps for my Walk All Over cancer every day this month I’m still 14,200 steps below my target and I feel like I’m really pushing myself to even make it that far. It’s typical for life with an incurable chronic illness but I’m determined to make it to 300,000 steps in memory of my brother, Duncan, even if it does take me a few days into July! When I’m not walking around I’m lying down due to my pain, this means I’ve spent a LOT of time watching Netflix and I found a film late Thursday night (technically Friday morning but it doesn’t count if you haven’t slept yet!) while I was trying to avoid being sick from my meds which I feel everyone needs to see, the film is called Kiss and Cry and it’s available on UK Netflix.

The film follows the life of Carley Allison who was diagnosed at 17 with a incredibly rare type of throat cancer and her journey living with an aggressive disease, finding love and basically showing us all how you can live an extremely full life by being an elite ice skater turned singer who also used her YouTube channel to show her singing with a tracheostomy while living with cancer. I know I’m extremely affected by the legacy of Carley especially because of my own journey with Crohn’s Disease leading to me having my colon, rectum and appendix removed and being fitted with my own ostomy alongside losing my brother to cancer in 2014 when he was described as being the less than 1% to be diagnosed with oesophageal cancer in their early 30s. The film Kiss and Cry really does show completely what life is like for those going through it and their family when fighting cancer or any other incurable illness. From developing a sense of humour to deal with the extra hard moments, to not romanticising the true effects of medications like chemo where you could literally end up throwing up all over yourself (trust me, I was on low dose chemo and I was sick every day for over a year and there’s nothing cool about that!) and showing us all there is light in the dark and that being crohnically ill doesn’t mean your spark has to go out and you have to lie down to it, you can also live out your dreams. 

I absolutely love Carley’s spirit and I believe it shines so clearly through the acting of Sarah Fisher who plays Carley. She is such a sassy, funny, strong, caring soul and the way she faced her journey is inspirational. Through the hardest time in her life she still was able to make sure that she took care of her family, friends and boyfriend John by being a complete pillar of strength in circumstances no one ever expects to find themselves in. I couldn’t stop crying through the film, especially seeing Carley’s interactions with her sisters because I remember so clearly being in their position with Duncan through his cancer journey too and I feel what they’re going through so much and it breaks my heart because you never have a closer bond than you do to a sibling, especially when one of you (or both in mine and Duncan’s case) are sick. Yes the film has cancer in it but the thing I’ve taken away from it was that it isn’t a “cancer film” it’s basically the furthest thing from that you can imagine. The film shows the hard sides of cancer and chronic illness but it does not dwell on them. It instead focuses on how important it is to love fiercely, live your dreams and to live the best life you can no matter how long it is exactly like Carley did.

I don’t think I could discuss the film without discussing the love between Carley and her boyfriend John. Being someone who found love when you least expect someone to stick around (myself and Stuart met 3 months before I got my major surgery to get my colectomy and ileostomy) is a magical thing and being able to watch their relationship unfold in film really touched my heart. I don’t want to give too much away but once you have a serious illness it’s very easy to think your partner is going to find it too much to deal with and finding that special someone who proves you wrong and sees you as more than an illness/disability is the best feeling and I can honestly say that love really is the best medicine (cheesy I know!). Kiss and Cry portrays exactly what it’s like to be young and starting out in a relationship in a way I completely can relate to. I’ve found in many other films I’ve watched that it definitely is romanticised falling in love when you’re chronically I’ll which really doesn’t raise awareness for how strong our partners are. Love isn’t always fancy dates and nights out, sometimes it is just having your partner hold your hand then give you a hug as you discuss your fears or even having them rush to hospital with you when you do go out to do the fancier dates. Kiss and Cry I really do thank you for not shying away from the realities of dating chronically ill and I just wish the film was around when I met Stuart because I feel like it would have eased a lot of my fears about “what guy will want me when I’m so sick” because I really had no idea there were others out there who could find love really in the toughest time of your life. 

I bet some of you have noticed I don’t say Carley or Duncan were amazing souls who touched thousands of lives, I say that they are amazing souls who touched thousands of lives and continue to do so through sharing their story’s. They have both left legacy’s through the impact they made on the lives of everyone who knew them and that will live on for many, many years to come and I like to think that keeps part of them alive too. 

I know I’m going to be spreading Carley’s story as far wide as I can so she can continue touching lives and keep her memory alive with legacy through Carley’s Angels. I hope you watch Kiss and Cry so you can hear all about Carley’s story and be as touched as I am. 

Jen x

15 Week Proctectomy Update And Summer Outfits With An Ileostomy. 

Hey Crohnies! 

Happy Sunday, I hope you’ve all had a fab weekend and I apologise for my super long break in my blog posts, I’ve done some posts to come out in the weeks ahead but since someone used one of my blog topics I discussed on twitter I’m not posting that for now and I’m working on diversifying that post a bit since, you know I don’t want to post the same content as another blogger… I have however learned my lesson and I will NOT be posting about blog topics as I write them anymore, this is my livelihood and I feel sad when my thoughts are pretty much copied word for word as it isn’t the first time this has happened. Sorry for the negative note on this but I feel I had to explain my lack of posts recently! 

Back to my actual point of this blog, I wanted to discuss my recovery from my proctectomy since I’m now almost 4 months post surgery! If any of you read my posts; What I’ve Learned Since Having A Proctectomy and my Post Surgery Complications, then you’ll know I had a fairly good start to the world of having a Barbie Bum with pretty good pain management and being mobile quite soon after surgery… however then I had my issues with my stitches coming out my ass and needing them surgically removed due to excessive swelling making them be basically under my skin then my front wound decided to open up completely and led to me needing daily packing and dressing changes from my wonderful district nurses.

It’s hard to believe it but all of the above happened within a 5 week period and slowly I’ve got much better since all of that drama! I had my front wound packed until week 12 then I just had plasters on for a few weeks and I’m now about 10 days free of any dressings on my tummy which is a really weird feeling since I have no feeling on or around my scar for a good inch of space and it makes for wearing clothes a very funny feeling. The worries about needing any kind of plastic surgery to help with the scar being less invasive are totally gone, my wound healed up crazily well and it is purely thanks to my amazing surgeon Graham who cut away skin and internal stitches since my body wasn’t healing right and also my nurses who were so tireless in their efforts every day to make sure I had the best care I could get while at home! This is what my tummy looks like now, I love my new belly button and my scar looks amazing, only a tiny bit wider than it would have been had it not dehissed and split open!

I love that my bag completely covers it!

I have had a very recent setback with my wound on my tooshy though… my wound healed up great after splitting when my stitches were removed and I was signed off from my nurses needing to check it and by my team of surgeons about 3/4 weeks ago. This was amazing news and meant I could bath freely and even managed to go swimming twice! 

I don’t let my scars or my bag or my stretch marks from previous steroid weight gain stop me enjoying myself by going swimming, I’m pretty proud of what I’ve come through and I see them as a way to raise awareness and also just make it easier to talk about with people, I love answering anyone’s questions if I notice them catching their attention on my tummy and it’s always great when you can help someone new know it’s nothing to be scared of and that it doesn’t make you have a horrible quality of life because you never know, themselves or someone they care about could be in my position one day and they might be able to ease their worries about life with a bag!

After my weeks of great butt health, I started to notice pain when I was sitting down again about 5 days ago, this was really surprising because I normally only ever get pain when I sit on a really hard surface like a floor but this was even happening on my couch or in bed and knew I had to go to the GP to get it checked out. Luckily I went when I did because my doctor discovered I now have 2 new weeping sores on my scar where it has opened back up and pus was leaking out which needed to be swabbed and sent away to be speciated at the lab because I have a pretty bad wound infection! This is really worrisome to someone like me who has been immunocomprimised and has also had sepsis because my infections can very quickly turn dangerous and require hospitalisation for IV antibiotics or surgery. I’m sadly now back needing my wound dressed daily with help from my amazing mum or amazing Boyfriend, Stuart with nurse visits every other day for them to dress it and check it’s progress alongside a heavy duty dose of Flucloxicillin until we find out which species of bacteria I have and get some more antibiotics to knock this out my system! I’m on antibiotics for the foreseeable future which kinda sucks because I always feel really sick on them but my pain is already getting much better after only 3 days.

I might have an infection but I still got to enjoy some sun!

Since I’ve discussed all about my actual wounds, I think it’s only fair I share my physical and emotional recovery too. I know many of you may have noticed I took a break from social media in march/april because I had been really depressed about being ill again and not able to do much for 9 weeks until I got some of my strength back from the surgery. It really is mentally challenging to go from being used to being in pain but able to function to an extent to literally needing to have your mum give you sponge baths and not even having the energy to change my own bag. As much as I have an amazing support system with my family and friends and IBD family and Stuart, I was struggling by feeling really alone because my antidepressants weren’t absorbing really well after the surgery and it took me a good month to realise that was what was going on. Now I’ve had my meds adjusted I feel so much better and more like myself which is great and mentally I’m in a far better place than I was these last few months! 

Having a great support system makes recovery much easier

Plus having such an amazing IBD family makes the bad and the good times so worth it!

Physically I found the recovery the hardest as I was unable to do anything at all for myself for weeks then had to really slowly walk little bits more each day and rely heavily on a wheelchair or scooter to get around. Having major surgery literally knocks the stuffing out of you so you really need a lot of care for the first couple of months but very slowly I’ve managed to get more and more well to the point I’ve managed to go out alone for the first time in 6 months, go to a friends wedding and one of my besties hen party, go on my first night out for my other besties birthday, go out for lunches, swim and walk my first 10,000 steps in a day! 

Fondue for 2 at Brel is alwaus amazing,especially when you get to catch up with your friend!

I honestly don’t know where I’d be without these girls!

The first night of drinking was so much fun with such great company!

It’s a long road but I’d definitely say I’m on the road to becoming healthier than I was in years. If I had to redo all of the surgery, complications and recovery again to feel this good just now, purely to know I don’t have anymore major surgeries planned in the future. Life is definitely getting better day by day! … did I mention I managed to complete a whole semester of university while going through the surgery? It was almost impossibly hard but with the fantastic support from the University of Strathclyde I not only completed it but I’ve already achieved some pretty great grades!

Having such supportive lexturers makes uni so much easier to deal with!

Oh, and I’ve also got a surprise to share with you all. Myself and Stuart have been invited to attend the queens garden party in July at Holyrood Castle! 

Okay so enough about my life update, here’s some of my favourite outfits of the past 15 weeks! 

New Look Emilee Jeggings are a post surgery must have at £22. I love a causal pair of Vans with a Boohoo White Tee and Primark Checked Shirt!

I loved this dress for going to my friends wedding. £40 from Missguided and it hides even a half full bag! My clutch was Topshop and Primark heels

This River Island distressed top is so comfy and cute, I love it most with mini buns in my hair!

This Straight Out Of Colon Tee is available on eBay at £10 from the seller Super_lemon

Primarks PJs are the best, they wash amazingly and they have the best designs… my Disney obsession grows!

This Brave Soul tea dress can be dressed up or down and is perfect for the warm muggy days with tights ornsunny days without!

Denim dresses are so on trend and this Primark one was only £10 and the babydoll design makes it so ostomy friendly! Plus it’s the softest denim ive ever felt so it is a great summer piece!

My top is Topshop from the sale in winter and was only around £10 but it washes like a dream, I leaked all over it and its like brand new after a wash! my cardi is H&M and my bag is New Look

This is my go to outfit for any occassion right now! My jumper is Cath Kidston x Disney and it is so beautifully made and my skater skirt was a Primark bargin from years ago I have always got on!

Last week I wore shorts for the first tome! they were from Boohoo £22 and i got a bigger size so they accommodated my 7lbs ive put on! My bodysuit is H&M and my hoodie is Primark

This is my bargain of the year, a Primark £10 playsuit which is so flattering and glides over my bag and scars completely disguisingn them and I’ve been asked SO much where I got it from, apparently it looks like a Urban Outfitters purchase!

If you’ve persevered with me this far then I really appreciate it! I hope you all have a fab day, I’m off out with my family to go to the Ideal Home Show in Glasgow, it’s our yearly tradition and I can’t wait! 

Jen x

How I Manage Nights Out With An Ostomy And Recovering From Surgery! 

Hey Crohnies!

I’ve had a lot of people ask how I manage to feel comfortable going on a night out to a club with an ostomy and especially having only had major surgery 3 months ago. I feel like after spending so much time being home on bed rest after the surgery I’m now sick of staying home and I’m really motivated to enjoy myself since now the hardest part is over! I hope that by reading this post that any of you either waiting on surgery to get a collectomy or proctectomy or really any other surgery know that you don’t have to miss out when you’re recovering or if you’re not waiting on surgery that you get your questions answered and learn about my new normal. 

First off, before you decide to go on a night out, make sure you feel comfortable going on a day out! 

I am preeeeetty well known for pushing my boundaries far too early and my biggest tip is to try a good few days out where you practice walking around and are able to stand for a good few minutes at a time before needing a seat (or in my case fainting!). After ending back in hospital after a night out a few years ago after only being discharged 3 days prior for my birthday, I’ve learned how important it is to make sure I don’t push myself that much ever again… and don’t listen to that saying of spending all your money on shots and getting an ambulance home, that is a BAD idea!

In preparation of my first night out I had made sure I have been walking more and more each day and I’m now at a point I don’t feel worried about passing out in public as I can at least stand unaided for a decent amount of time. I also completely got used to going on out on days out without my wheelchair unless I know it’s going to be an extremely tiring day for me or I’m not feeling well.

I’d also make sure you discuss your planned night out with your team of doctors or call a nurse to check there’s no reason to not go out

This might feel like you’re being babied or told what to do so you’re not in control of your own life but this is super important to do. If you’ve just had any kind of major surgery or you’re in a flare up etc. the people who know what is in your best interests are your team and they want you to be safe as well as enjoying yourself. Remember if you’re desperate to go do something a bit risky you could be biased to your feelings and not be as ready to do it as you personally believe so involve the professionals to get an unbiased opinion. 

I had discussed this with my nurses and surgical team at my most recent meeting on Tuesday and they said so long as I felt good on the day I was fine to go enjoy myself, this is a very different story to even 2 weeks ago when they wouldn’t have been as supportive as I wasn’t eating as well as I am now and I wasn’t strong enough to handle going out with the walking/dancing involved as it was really going to push me alongside with my wound not being as healed as it is now, I’ll include an up to date picture of my wound which I’ve now graduated to a small bandage and only have some new wound separation at the bottom 2 inches meaning the top 7 are healed up now! This is a HUGE difference from my last blog post when it had literally split from right under my tummy button to down past my pant line! I’m also going to do a 12 week surgery update with an explaination about my long break from blogging which I’ll post in the next few days. 

Pick your “person”. You might need help when you’re out and you need that person to know how to deal with the situations that arise.

I’m very lucky to have my boyfriend stuart who is trained to care for me in every way I am. He can do bag changes, wound dressings, knows how to help if I become ill when out, knows all my emergency contact details alongside having all my families phone numbers and knows my medical history alongside allergies. This means if there is was any problems I would completely comfortable that he will advocate on my behalf if I am unable to do it myself. This has a very small chance of happening but it gives not only myself but also my parents peace of mind because I am in very capable hands! Since I’ve now been on my night out I know that I didn’t have to worry but having Stuart be my person meant that I had a lot less to worry about.

It is also important to have your person be able to remind you to drink more fluids or take meds if they’re due when you go out and that they don’t leave you to go home separately as anything can happen and especially for your first night out in a club setting so it’s crucial to have them make sure you go home in one piece! 

Think about medical alert jewellery

I have been really hesitant to get a medical alert bracelet the last few years because I found them previously to be very garish and in your face. When I found out I was getting my proctectomy I decided to look back into this and I am delighted with the change in how gorgeous the ones you can buy nowadays are! I of course chose a rose gold one which has the information on my Crohn’s and ileostomy and I’ve also filled in the medical information on my phone which can be accessed by paramedics if you’re unable to advocate for yourself in an emergency situation and you’ve somehow lost your person… you could say I’m being cautious (or you could say I’m being mental but this gives me peace of mind!).

Remember to stay hydrated and line your stomach!!! 

Not to be a total mum but it helps avoid a hangover regardless of if you’re like me! 

I didn’t think my nurses would have got over laughing at me coming in to the day ward with my pjs underneath my joggies, sunglasses on and a bin bag hidden in my backpack in case I threw up when I went in for an inflixamab infusion a good 4/5 years ago and being hooked up to extra fluids all day to rehydrate me because I was feeling so bad! 

I like to take my emergency supply kit when I go anywhere, not just nights out!

This sounds much more serious than it is but really it’s my spare stoma supplies alongside some spare dressings for my wound and some plasters and painkillers (I was wearing heels so really I’m just being prepared for blisters which luckily I never got!).

Make sure you love your outfit

It’s crucial for me going out after a surgery and living with an ostomy to be able to enjoy my night that I feel like I look good! My outfit for the evening consisted of my Primark booties and 120 denier tights with a pleated leather look skirt also a Primark steal from a few years ago which is super high waisted so it comfortably hides my bag and my new scar/tummy button. I’m also wearing my new BooHoo ribbed long sleeve crop top and distressed black denim jacket as I’m always cold and don’t want to risk catching pneumonia when I’m not as strong as I used to be and my immune system needs a break. 

Next I do my research on the club! 

We went to the o2 ABC glasgow and I’ve been there a fair few times so I don’t need to check where the toilets are and how accessible the club on a whole is since I know there’s lots of places to rest as I go upstairs, easily accessible toilets and I’m even aware there’s a lift for if I was really struggling that I could use. 

This is probably the most important tip I have, please remember to make sure you actually feel up to going out on the day, don’t risk your health if you’re not feeling well by pushing through it and not enjoying yourself and paying for it later!

Probably the worst part of having a chronic illness or surgery is that sometimes it’s inevitable you’re going to miss out on some fun stuff. This SUCKS. The amount of times I’ve been upset because I’ve had to miss out is countless at this point but I don’t regret it when I think back on the times I went out when I was too unwell to go and it has set me back for weeks. 

I have a habit of getting sick around my birthday and I’ve had to cancel my plans the day of my birthday 7 out of the last 10 years because of it but there was 1 year I pushed myself and went out and I literally put myself in hospital and it led to me getting really unwell for a good few months and almost led to me getting my ileostomy surgery in 2013… as much as I hate to admit it, sometimes the sadness of missing out is worth it in the long run.

When you’re on your night out remember to listen to your body.

When I was out I had a bit of pain in my scar on my front from doing a lot more moving than I’m used to especially with dancing and I had to go take my meds and have a seat on some stairs next to the dance floor which was great because we had a spot right next to the stairs so I could still be involved with the partying but could also rest! 

I also had the beginnings of a bag leak but it was so slow that I didn’t feel it and only had some slight itching… I luckily was not drunk enough to ignore it and managed to get to the toilet in time to avoid getting any output on my clothes! It would have been perfect for my skin today but once again I’ve woke up with a leak which has left my skin in a bit of a state today! When stuff like that happens like it has 2 nights this week when Stuart’s been staying it really helps that he’s so understanding and isn’t just my boyfriend but my person, it’s great to know that no matter how bad the leak is he’s always there to help me clean up and change the bedding at 4am or get my supplies for a change of bag. 

I’ve also had a busy day today visiting my gorgeous little cousin, Tommy, for his first birthday party and I had to be very conscious today of keeping up my fluid intake even though that was the last thing I wanted when I had a hangover! It definitely helped so much because once I was hydrated again I didn’t have the sickness I did when I woke up. It was great when I got back home and could relax, get on my pjs, have a takeout and have a relaxing bath! 

Finally, remember to enjoy yourself! 

I know I’ve put a LOT of information in here and it can be really overwhelming trying to take everything in and not get stressed out about going out while you’re unwell but once you’re out enjoy it and savour all the moments and make lots of memories with your loved ones! I know that last night it was amazing for me to see my friends and celebrate Rachael’s birthday! 

I think that’s enough from me, happy Sunday! 

Jen x

Post Surgery Complications… (warning: graphic photo) 

Hey Crohnies and Lucky Coiners,

I’m now more than 3 weeks after my proctectomy surgery and I’ve had a lot of people asking how I’m getting on because I’ve not been up and about and I’m still struggling a lot with pain and a few complications so I thought I’d try my best to explain it here but what good is explaining it all without showing a picture too? Basically anyone squeamish might be affected by this picture so if you’re eating dinner, scared of blood and couldn’t watch a hospital tv show because of the fake blood maybe this isn’t for you!

I’m going to start by saying that most people don’t have these complications, some do, but mainly poor healing is a sign of Crohn’s but also it’s just a Jen thing too because I apparently love the NHS so damn much! 

As many of you know if you follow my posts I had a fantastic start to my recovery and only had to be in hospital for 6 days after the surgery when it was predicted I’d be in 2 weeks. It reall couldn’t have gone better and my surgeon is absolutely amazing but 1 week after I got home, basically 10 days ago, from the Friday night into the Saturday morning I was in a lot of pain at my surgery site. This pain literally felt like I was being unzipped and it was so painful I had to take 10mls of morphine before bed and twice during the night. It was rough. I had told my mum and Stuart I didn’t feel right and I felt like my wound was getting infected because of the pain. 

On the Saturday morning when my nurse arrived she got me to peel off my dressing and we were all shocked to see that 4 inches of my tummy had opened right up, down at least an inch and was over and inch wide. I could see internal stitches and everything, it was terrifying because I had no idea what was going on! To get an idea of what it was like, here is the picture I took yesterday morning of what my wound looked like before even more separation happened so it has split right down to the bottom now. 

At first it looked far worse and it was pouring out blood to the point I needed dressing changes every morning and night. It was so distressing and now it will lead to months of district nurses who will come and help me get through this and heal up my wound… I definitely wasn’t prepared for this!

It also means I’m likely to need more surgery from the plastics team to make the scar smaller and less likely to split once I have babies! It’s actually really scary to think that this has such wide reaching complications that could follow me down the line especially since the healing of this wound is likely to take months if not the majority of the year. 

As much as this is a scary thing to go through I’m staying positive because really it could be worse and at least I don’t have sepsis this time! It’s a long road but hopefully it’ll make me a better person and it’ll be for the best and finally get me healthier than I’ve been for the past 10 years! 

Thank you all for following my journey,

Jen x

What I’ve Learned Since Having A Proctectomy

Hey Crohnies and Lucky Coiners,

Not posted in a few weeks because I’ve been away having surgery to have my proctectomy, some of you might not know what that is so I’ll explain it a bit more. Basically 2 years ago after I had the majority of my large intestine removed I started bleeding from my bum which only got worse until the point I was getting caught short with the blood if I wasn’t at a toilet fast enough. This led to my surgeon giving me the only option of getting my rectum, intestinal stump and bum hole removed because they were just starting to decay and were never going to get better on their own. This involved a whole day of surgery (I’m a difficult case, most people are only there for 4/5 hours but I was closer to 8/9!) on the 27th of January and now I’m home I wanted to talk about what I learned these past few weeks! 

The fear of the unexpected is way worse than the outcome ever is. 

No matter how many surgeries and general anaesthetics I’ve had (probably nearing 20?) the gut feeling of fear never ceases until you’re actually awake in the recovery room and know it’s all over, even if there are complications. I had some bleeding in my pelvis that was a complication but surgery was otherwise smooth and the feeling of relief I got when I woke up was crazy! 

You will probably get emotional before surgery and think the worst. 

I managed to keep it together until just when I was saying goodbye to my mum and stuart… then I couldn’t stop crying and telling them I loved them. I have complete and utter faith in my surgeon but I have to admit there is always a part of me that worries I won’t make it through right before I go in, this is always needless because I’ve always survived until now! 

Epidurals may seem scary but they are a miracle worker.

I never had an epidural before I had my last surgery and I majorly regretted it because I spent weeks in a pain haze that meant I can’t remember anything from that time other than how bad the pain was without the epidural! This time I went into it thinking I needed to focus on getting it done and once it kicked in after surgery I was laughing and joking with my family less than 2 hours after I’d woke up! 

Your dignity can and will go out the door. 

There’s nothing quite like meeting the people who will be giving you surgery and helping like nurses and anaesthetists knowing they’re about to cut you out of your paper pants and do surgery on your pelvis and ass… please remember to check in any and all embarrassment or dignity at the door, you can collect it when you leave. I even had nurses give me bed baths for a few days so I do apologise to every single member of staff who saw me naked… I would panic about it if I pondered this too much so I tend to try and laugh it off then put it in a mental box that’s chained up and locked forever so I don’t cringe my face off! 

All your medical team are people too and they are as emotionally invested in your surgery and recovery as you and your family are.

When I was getting my epidural I had a wonderful student nurse hold my hand and tell me I was going to be okay but just as we finished up I ended up getting really faint and had to lie down and be fanned with a sick bowl. Seeing how fast I got unwell made the nurse get sick too and she nearly fainted because she was so worried! This is why the people who work in medicine are the most special type of people, it takes a very strong person to be able to be emotionally invested in hundreds of people each year and still make a huge impact on each and every one of our lives!

If that student nurse is out there reading this, I know you’re going to make a fantastic qualified nurse one day, your compassion in such a worrying time for me helped me through and without you I’d probably have gave up on the idea of an epidural and probably would still be in a fog of pain and in hospital! 

Waking up after surgery and not having my epidural strong enough was tough but so easily remedied! 

I woke up from surgery in a lot of pain because of my position being the same for so long, being flipped for the part of the surgery done at my tooshy and having some major surgery meant that for a good 10 minutes I was ridiculously aware of how sore I was! I even started crying to a nurse about how I wished I didn’t have the surgery but as soon as they upped my dose marginally it made all he difference and I went from crying to laughing with the same nurse about how itchy it made my nose! 

Morphine makes your nose SO itchy! 

Seriously, no idea how to combat this but it was hilarious how much I was scratching my nose for the first 2 days! It was the first thing my family noticed about me when I arrived to the ward and I had them laughing about it for days.

You can have major surgery without it looking major on the outside! 

I only have one super thin scar which is hidden by my bag, alongside a brand new belly button (my old one was infected and had a wound behind it that never healed so they just took it out!) which is in a much easier position slightly to the left and higher than it was before so it isn’t bothered by my bag at all. I also had my bum hole removed and instead of a line instead of a hole graham managed to remake a new one that looks like a bum hole but it’s all stitched up inside! 

I’m still in awe at the work he’s done! 

Bed baths are the best/worst thing ever.

After surgery you’ll feel disgusting… no way around it but chances are your nurses will give you a bed bath the morning after. This is amazing because you’ll feel clean again and it’s great to smell like your toiletries instead of THAT hospital smell but is also horrible because you’ll feel freezing while they do it and there’s always the awkward “these people are seeing me naked… how do I talk about other stuff to make it less uncomfortable” feeling but just remember that your nurses do this every single day… they aren’t analysing the size of your boobs or your stretch marks or laughing at cleaning around your catheter, they literally just see it as giving someone a good clean to make them feel better and for this I’m so grateful! 

You’ll feel like you can do anything while on the “good” meds. 

Last week I had no problem walking around, going to the toilet with no pain, sitting up properly for hours at a time and even managing a sit down shower… this is only because your painkillers make your pain waaaay more manageable for the first few days, after they cut down to just oral meds you’ll be probably less active and it’ll hurt more than it did. That’s okay though, it’s a good sign of you healing! 

Sometimes it’s hard to stay positive.

I know I try to sound upbeat and positive on here but really I am a fairly negative person, being chronically ill and having a decade of all these treatments and all the other craziness that goes along with it will get hard sometimes. It’s okay to be upset, it’s okay to be angry, it’s okay to mourn for the life you should have had! It’s okay to be jealous of seeing your peers doing all these things you’ve never been able to and it’s okay to get irritated by people saying “you just need to be positive”. 

It’s very easy for people who have never been in your situation to say it’ll get better when it feels like the world is ending but that’s okay too, they’re trying their best to be helpful and make you feel better. It might not be the right thing to say but remember how scary all of this is for you, they’re probably feeling sad, scared and angry about what’s happening to you just as much as you are! 

It’s okay to ask for help. 

Right now I can’t sit up, do more than a small walk, drive, wash myself, get juice or food for myself or bend down. I hate being so dependant on people but it really is okay to ask for help. Your friends and family all love you and will help you in every way they can and will do it with a smile. Just remember to not take them for granted and remember to say thank you for their help and they’ll never mind giving you any help at all! 

You might not be ready to leave hospital when your team are ready for you to go! 

I was technically supposed to be discharged on Wednesday evening because it all went so well with recovery but in myself I wasn’t quite ready to go home. I was still struggling a lot with feeling faint when walking and needed another day of the stronger pain relief so I made the decision to stay in 1 more night and it made the world of difference! Listen to your body and don’t do anything you’re not ready for! 

Recovery can have some unexpected downsides.

When I left hospital everything looked wonderful but since I’ve got home the stitches in my Barbie bum are jagging into my bum and making it bleed and I’ve also got some wound separation, this is totally normal but it’s been hard for me to get my head around it as these side effects have only occurred since I got home! Luckily the stitches are out on Friday and my district nurses are changing my dressings daily and making it heal as well as possible.

Getting better may take longer than you think. 

When you’re on the good meds you tend to get really confident you’re going to be great and back to normal within 2 weeks… realistically the recovery from a proctectomy is 4-6 weeks but in reality it could take up to 6 months to get you back to normal. Now I’m almost 2 weeks past surgery and worse than I was when I was released from hospital I realise how wrong I was and how this is a long term recovery. It’s really important you listen to your body and take it easy… not knowing your limits can cause set backs so make sure you don’t overdo it! 

You will be sick to death of people telling you that you look “great”…

Seriously tough to deal with this one, just because there aren’t any major signs of the surgery on the outside other than bruising from all my lines it’s easy for people to think I look wonderful. In reality my rosy cheeks are because I’m struggling to get enough oxygen when I stand up and have to pant so I don’t faint and I’ve got “great skin” because I’m anaemic and literally just avoided another blood transfusion after surgery due to the bleeding in my pelvis. I might look brilliant too because I’ve lost weight… trust me I’m enjoying this side effect but really the whole not being able to eat because it causes pain isn’t fun and it’s actually just a consolation prize for being so unwell. 

I’ve actually got to the point of crying over this one because it makes me feel like so many people don’t realise how hard it actually is to go through this kind of surgery. It really is life changing and it’s tough giving up your life for such major surgery. Just because they can’t see how much pain you’re in from your stitches in your bum or the wound separation on your stomach that’s at major risk of infection doesn’t mean you’re well and I wish they’d understand that when I try to explain what it’s really like. 

 District nurses are the unsung heroes of the medical world! 

I get daily dressing changes due to my wound separation and it’s absolutely amazing to have such friendly, caring, compassionate and loving nurses who always go above and beyond for me! I’ve had a nurse even all up to get me a prescription because I was too sick to to to out of hours for morphine, I’ve even been given an incredible cushion to put on my wheelchair or anywhere else I sit down that would have cost £90 to buy myself for free! They even have properly cleaned my bum when it’s too sore for me to do it myself and they’re so incredibly gentle it’s unreal! I actually look forward to their 10am visits because they feel more like friends than nurses! 

It also means the world to me that they’re the same nurses who looked after Duncan and gave him the same amazing care they gave me! It’s really fun to be able to have a laugh about how I know he was their favourite patient and I’ll have to settle for second place! 

Most importantly and my final point is you don’t have to be happy or smiley all the time! 

I know I tend to have a funny attitude to this surgery and try to remain jokey as much as possible and smile for mainly everyone else’s benefit but really it’s so important for everyone to know it’s more than okay to be upset or even angry about your recovery or surgery or the changes to your body! Remember it’s YOUR recovery, no one else’s and how you cope with it is completely up to you! No one has the exact same experiences and it is tough but you will get there in the end and you should be so proud of yourself for going through all of this! 

Thank you for reading and as always for your continued support,

Jen x

What Have I Learned From Having An Ostomy?

Hey Crohnies and Lucky Coiners,

If any of you have been following my blog posts for the last few years you’ll know I celebrated my second stomaversary on the 12th of December so I thought that I’d let you guys know what it’s actually like to have an ileostomy for those of you who don’t have one or may be waiting on getting surgery for one.

The surgery is pretty rough.

I remember the day I was admitted for the surgery, I’d been prepped with my little dots of where the ostomy might go a few days prior and was feeling pretty average in terms of my health, I was declining but slowly so I didn’t really notice it. After surgery however, I literally felt like I’d been hit by a bus, and not just a normal bus, I’m talking a double decker or a tour bus for at least the first 3 days but then there were definitely signs of improvement and less pain! Thank god you’ll hardly remember any of it, morphines a hell of a drug.

You’ll wake up with a massive clear ostomy bag… don’t panic!

I freaked out after surgery because I wasn’t ready to see my stoma, I was more than a little hesitant to take a peek under my covers and didn’t even know if surgery was done open or laparoscopically for 2 days until I was aware enough to feel up to taking a peek and even then my reaction was basically “WHAT THE HELL IS THAT THING, WHY IS THERE BLOOD IN THE BAG, WHY IS IT MASSIVE? YOU TOLD ME ALL MY BAGS WERENT THAT BIG, THAT’LL NEVER FIT IN SKINNY JEANS!”. You might laugh but I actually did freak out. A lot… but then my surgeon the ever magical Graham calmed me down and said; “of course there’s blood, you’ve just had major surgery and it’s an open wound, the bag’s only that big because we need to measure your stomal output over a certain timeframe and it won’t need emptied that quickly. Trust me you’ll get smaller bags and they won’t be clear, these are only clear so the doctors and nurses can see everything’s okay.” Needless to say my panic (as always) was totally needless and less than 2 days after surgery I had a nice opaque midi bag on that is tiny in comparison… now however I’d love the big bags so I don’t need to get up to empty my bag during the night and I could be lazy!

Cough and sneeze with a cushion to hold onto over your tummy.

For me it changed my life! I sneeze like 12 times in a row and had a sneezing fit the day after surgery before I knew that trick and thought I’d popped open a scar! Luckily it doesn’t cause damage but it wasn’t fun trying to control those sneezes before I clenched the cushion, then life was great again!

Don’t eat the stuff your stoma nurse warns you off or you’ll regret it… sometimes it’s worth it though! 

I’m a big fan of food. I think most people are, so being told certain foods like nuts, corn, dried fruit, seeds, coconut and mushrooms might cause blockages and you can’t digest them can be really annoying but trust me there’s nothing worse than eating a few bits of popcorn and getting a blockage that’ll make you go to hospital just so you can wait it out or get it flushed out. In my opinion though certain times I feel the pain after is worth it to enjoy some of my favourite foods like mushrooms so long as you chew really well and hydrate lots!

Don’t drink fizzy juice straight after surgery and don’t push your body to eat foods you know it can’t handle straight away.

Trust me, you’ll throw up so much you can’t even look at the food for a while! Give it a couple of weeks though and you’ll be back to normal.

Stomas can and will fart at the most awkward times!

Sometimes you either have to laugh it off or blame it on the person next to you (this is my preferred choice). I only found this out about a month after getting my ostomy when I had Chinese with my family and my boyfriend who’d only been with me for a few months at the time and mid sentence my ostomy did the biggest fart of all time! It felt great though, pretty sure I had trapped wind! There were a few seconds of silence before everyone burst out laughing!

My best advice for this is to just laugh it off, acknowledge it but don’t make a big deal out of it, I like to laugh it off in any situation, you can’t help it and you’ll make the people around you feel more at ease to have a laugh about it too!

There are a ridiculous amount of different ostomy products… 

I don’t even know where to begin with this one because it is really overwhelming at the start to try and figure out what works best for you and what appliance and system for changes you prefer but there’s literally a product for EVERYTHING.

Sore skin? There’s a spray, cream, ointment and tape for that

Got a dip around your stoma? There’s convex bags, rings and pastes for that

Nervous about your bag leaking? There’s lots of different kinds of tape to buy you more time and there’s all sorts of ostomy underwear for more comfort and stability

Bag won’t stick? There’s a powder, spray, heater and tonnes of other kinds of ointments, belts etc to try

Hate taking off your bag because it’s sore? There’s sprays and wipes for that

I have no idea how they thought of all of this stuff but I’m so glad they did! I know everyone has their own preferences and it makes the whole thing much easier because you trust it works best to avoid leaks on your clothes.

Leaks are inevitable.

This I found hardest to deal with but honestly once you’ve got a routine that works for you it’s hardly an issue anymore! I’ve had a lot of leaks since I had my bag from being in bed with my boyfriend and waking up covered in it to a bag leak during a huge lecture theatre in uni. Yes it’s stressful and it’s embarrassing but it’s much better than actually pooping yourself like I did pretty much daily before I got my ostomy. Who ever wants to be 21 wearing adult nappies like I did? Not me!

My best advice is to go to the toilet the minute you feel a leak coming on and get your bag changed. It doesn’t matter how long you take to do it, relax and it’ll stay on properly. Also if you can bring a spare change of clothes, I leave some clothes in my car alongside wipes, tissues and a towel and my ostomy supplies. This basically means that I’m covered no matter what happens and even if I leak I’ll feel much better when I’ve cleaned up.

Last time I leaked was Christmas Day when my bag was half full and I tried to squeeze in to my seat at the table, I just went upstairs, changed and told them I had an outfit change! It’s funny because whenever I’ve changed in public no one even noticed!

Have an ostomy bag. This is literally a tiny bag you can take out with you that has all your essential supplies you may need while you’re out!

This is invaluable, I used to have one before I had my bag that carried a spare pair of pants, tampons and I’m pretty sure lipstick and nail polish. These days I keep my ostomy bags, rings, tape, platic bin bags, raydar key, some painkillers, Imodium and adhesive removed spray. My little bag is actually supposed to be a makeup case so no one even knows it’s there and I can easily carry enough supplies for a week in there without even cluttering my handbag up!

Getting a repeat prescription of your ostomy supplies is magical! 

You basically pick your favourite products and when you’re sure you’re going to stick with them for a while your stoma nurse can arrange with your supply company to get them delivered each month so you don’t even have to lift a finger, they just turn up at your door every four weeks like a subscription box!

You’ll love that people can’t tell you have an ostomy

Theres a certain special feeling you’ll get when you tell someone for the first time you have an ostomy when you’ve known them for a while and they have no idea! I remember telling some friends in uni after knowing them for a few months I wasn’t in because I had an appointment with my stoma nurse and they were all so surprised because I wear really fitted clothes like skinny jeans and vest tops and they’ve never been able to tell!

You can do everything you did before surgery and even more once you’re all healed up.

I’ve been to America and Poland, been on roller coasters and water slides, wore crop tops and bikinis, did a 5k and joined a gym. Having an ostomy doesn’t stop you doing anything everyone else does, the only reason I’m getting worse is because I’ve got some other problems with needing more intestines removed but most other people get to be so much better and stay better for the rest of their life!

You’re part of a pretty special group of people!

Everyone you can meet from people online to at groups or events for ostomates are amazing. We all want to help each other and are always more than happy to give advice, chat, offer support and do everything we can to help ease you into the transition of getting your ostomy. There are so many people out there you can get in touch with, especially groups like #getyourbellyout and #ibdsuperheroes, the toilet, me and IBD and the Crohn’s and Colitis UK Forum, all of which are on Facebook who have some of the nicest people you’ll ever met and I promise whatever you’re going through, there’s been someone who’s gone through it before and can give you any information you’d like to know at any time of day!

Not everyone’s ostomy is permanent!

Depending on your own case and disease you have you have, you might only have your ostomy for a short period of time! I personally have mine for ever (a bag for life as I like to call it!) but a close friend of my family only had hers for a few months after surgery so her intestines had a chance to heal before being rejoined and now she’s back to being joined up and getting on with her life without a bag.

Some people also make the choice to keep their ostomy to avoid getting more surgery to reconnect and because having an ostomy is easier for them than how they were before. I know that in certain cases like myself, that keeping the ostomy is crucial due to the severity of my IBD I have to get my rectal stump and anus removed as I’m at a much higher risk of it turning cancerous.

You should never be ashamed of your ostomy, health or anything surrounding the apparent “stigma” of having an ostomy. 

I used to be very self conscious and to an extent I still am because I am nervous about leaking (I have some skin problems, it doesn’t affect the majority of people) and I used to be very apologetic about having an ostomy or needing to use the bathroom more often to empty my output, the noises it makes, covering up wearing a T Shirt over my bikini and a whole range of stuff that is just ridiculous! Never be ashamed of who you are, having an ostomy is a reminder to yourself every day of how much you’ve gone through and overcome. Don’t feel embarrassed to show it off, I know I’m going on holiday again this year and I’m going to be for once completely comfortable showing off my bag! If anyone gives you any sort of unkind look or comment that’s their problem, not yours! Use the opportunity to hold your head up high and be proud of your scars or take the chance to explain to the person what you’ve got an how your ostomy saved your life.

Everyone from the littlest baby to the queen poos so don’t think that you have anything to be worried about. I know I’ve never had an unkind word or any gaze that was anything other than inquisitorial so you’d be surprised how accepting people are of anything when they know what it is!

You’ll adjust to life with an ostomy, I promise! 

I was the most cynical, bitter and depressed person in the weeks before my surgery, I thought it would ruin my life. Now, however, I know that was a complete overreaction, having an ostomy isn’t any different to living life like anyone else, you go to the bathroom less, you never have to worry about taking ages doing a poo and it’s very sanitary! After you get over the initial shock you’ll be so surprised with how quickly it just becomes part of your daily routine and you’ll sometimes even forget you have it! It’s worth sacrificing the enjoyment of a poo so you can live a worthwhile life and get a better quality of life!

I’d say that’s about all I can think of right now! I might do another post like this in 2 years about what I’ve learned since I didn’t have a bum hole or belly button but for now I’m pretty confident that I have no idea what I’m in store for over the next few years!

Hope you all have a great Thursday,

Jen x

A Little Bit of Everything to Start 2017! 

Hey Crohnies and Lucky Coiners and a very happy new year to you all!

I hope you all had a great festive period and have enjoyed all of the great parts of the season without any of my spoonie friends suffering through it. It’s hard to find the balance between enjoyment and being sensible and I know I’ve had quite a few sore tummy’s thanks to over indulging this festive period and I’m still struggling with the side effects even now!

I thought I’d do a little update on what’s been going on since egg collection surgery that happened at the beginning of December, it turns out there were 12 eggs that had matured enough and then 4 developed into embryos to be frozen for the future after I get my proctectomy and when myself and stuart are ready to start a family. Speaking of my proctectomy it’s actually moved back for a few weeks and now my surgery is confirmed as the 27th of January…

I It feels like a reprieve for a while so I got to enjoy Christmas but I’ve weirdly been having really realistic dreams about the whole thing; be it from getting ready for surgery or the days following it. I know I’m getting something fairly serious done since it’ll include removing my last bit of large intestine, rectum and belly button but after a LOT of reassurance from my surgeon I’m pretty sure I’ll get through this just like all the others. It just doesn’t help with my fears, especially about sepsis after having a severe case of it in 2015 that I’m still “recovering” from 2 years later.

It may seem sometimes if you follow me on Instagram or facebook or twitter that I am pretty obsessed with this surgery but in all honesty my life at the moment is revolving around it and it isn’t far from my mind. It must be hard to understand if you haven’t been through something like this but if you have the “cloud” of surgery or any other kind of treatment that makes you nervous hanging over you, it’s never far from your thoughts. Another thing that might seem strange is that this surgery might not change much for me in terms of pain. Lots of my pain is caused due to the previous surgeries and I have a lot of scar tissue that’s all over the place which isn’t ideal and this surgery will only cause more. I’m just hoping that it won’t take long for me to get back to my version of normal and hopefully have less worry about blood pouring out my bum 8/9 times a day! You never know though, this could be the final thing that really helps for a long time. I’m trying hard to not get my hopes up because I know nothing’s worked long term until now but in my head it’s always hard to ignore the what if’s when it comes to trying something new but there is going to be a period after surgery when things get a lot worse for a while, let’s just hope this one has a decent recovery so I can finally be more independent because I’m going to be like a baby for a while after needing help eating with all my lines coming out of me, needing help with washing and getting dressed alongside wound care and doing a lot of sleeping, I’m going to attempt to vlog and blog through it but I might not be able to if I’m really bad.

On a positive note however, I thought since it’s the start of the new year I’d do a rundown of my 10 favourite outfits from 2016 with my ileostomy…

10. The first in my list is from summer and it’s my go to outfit pretty much any night out that doesn’t require a dress! I teamed black high waisted ripped jeans (I’d recommend Topshop’s Jamie Jeans) with a cami top, I have loads of them in every style because they go with literally anything! Then I added a checked shirt because it was so warm outside I didn’t need a jacket but I didn’t want to risk being cold when we left the club. As you can see it was a good idea to wear the shirt because from our picture we all looked so coordinated! 

9. Next up is an oldie (so old in fact I have my weave in from the very beginning of 2016!) this is a perfect outfit for those days when your bag just won’t stop leaking but you still want to look nice. I liked to wear some super casual Chelsea boots (£8 from Primark) with extra thick leggings from H&M, an oversized shirt, this is from boohoo and is about 4 years old but it always comes out when there’s a bad bag day. I then put on a little bow tie at the top but if you’d prefer a little ribbon would work just as well and of course I needed a jacket so my leather look jacket with fur collar was perfect for that. If you want one January is the best time to buy with the sales, I got mine for about £37 on Asos in their sale.

8. next up I have a super causal outfit for meetings or work! I used to wear outfits like this every day when I was working full time but I decided to wear this for a meeting I had earlier this year. Basically I wore some over the knee boots that are flat with super thick tights and a very simple black dress with elastic waistband cinched in with a belt which matched my bag and as always a comfy cardigan! Pretty sure my cardigan and dress are from H&M, my bag is from Snow and my tights are from Primark.

7. Next I have a throwback from Florida in June, this has to be the outfit I loved most on holiday even though I did end up leaking everywhere because my skin was bad under my bag and I didn’t have my routine down yet! The high waisted shorts from Primark were super cheap around £10 and they were not only supportive but so comfy. My bodysuit was from Missguided and it was really helpful for the weather because it had an open back so it kept me nice and cool and it was so handy to have my shirt with me because sometimes the sun could be a bit much on my shoulders. And of course I have the Minnie Mouse ears, the best accessory ever, I just wish it was acceptable to wear them back home! 

6. This is one of my favourite winter outfits and it features a dog like my little Bella! I’ve found myself getting really cold this winter even though the temperature isn’t too low but it sometimes is because my feet are cold it makes me extra cold so I have my winter over the knee boots from Deichman’s on with fluffy bed socks underneath. I also of course had some extra thick Primark tights to keep me extra warm. The skirt’s from Primark too quite a few years ago but I noticed that Oasis has one in stock just now! My cute jumper is from Boohoo, I prefer the look when I  the sleeves up with it to make it a bit more relaxed looking. The coat is an old duffel coat I’ve had for years from new look but it’s something I pull out year after year and of course my tartan scarf is my favourite one from Primark I wear every winter! 

5. This next outfit was super cute for a day out in Edinburgh with stuart just before Christmas! Once again I had on my over the knee boots and tartan scarf but I changed the look up by wearing a black velvet dress with Peter Pan collar from Pulp and a burgundy trench coat from Primark that was only £10 in the sales! This was a perfect outfit with having an ileostomy because the velvet dress was an A-Line style that just flows over the bag perfectly even if it’s half full and hides it completely! I knew an outfit that was comfortable was crucial for the drive through but because it was a nice day out I wanted to dress a bit fancier, especially since we don’t get the chance to go out to do things like this very often! 

4. Next up is a great comfy outfit for days I’m feeling bloated or I have a blockage but don’t want to wear leggings or jogging trousers! I have my ripped Jamie Jeans from Topshop that are extra stretchy and are literally the only pair of jeans I feel comfortable in when I’m bloated with an oversized fine knit jumper from Primark, it’s baggy enough to hide my bloating and super warm for autumn/winter so it feels a lot better for those days I need to go out when I’m not feeling good! 

3. Next up I have my favourite post surgery outfit ever! I had a groin abscess removed in summer and I wasn’t able to wear any clothes that would rub against the wound for a week because it hurt too much and we were in the middle of a really hot week but because I was in pain after the surgery I found it difficult to regulate my temperature in the house so I  put on some knee high socks with grey stripes at the top from eBay, some jersey shorts from H&M which I wore to death that week (I had 2 pairs so I could wash one pair a day because the wound leaked for a while) and a Primark Mickey Mouse raglan tee. Just because you’ve had surgery, it doesn’t mean you can’t look cute! 

2. This is a perfect causal outfit for uni or a day shopping if it’s teamed with my leather look jacket. What I’m wearing are the Primark tights and shorts previously mentioned with a Calvin Klein Bralet and Vans off shoulder oversized t shirt tucked in I found in the Vans outlet in Florida for less than $3! I love this outfit because even though it’s causal it’s not just leggings and a vest top and all together minus the Bralet the whole outfit was less than £20. I’m probably going to be wearing the Bralet and top after surgery a lot and substituting the shorts and tights for some leggings. 

1. Finally the last outfit of my 2016 top 10 was one I didn’t get a picture of until today and it’s my blackwatch tartan dress with Peter Pan collar alongside my tights and over the knee boots. This is such a flattering outfit for any kind of fancier occasion and I am a big fan of wearing stuff like this to meeting I have because it’s really fitted at the top and is only slightly flared at the bottom so it’s about as close to a body on dress as I can get now without showing off my bag! I absolutely love this dress and it’s one of my favourite outfits I have in my closet because it’s able to be dressed up or down for any occasion! 

I hope these outfits gave you some inspiration, I’d love to see any you could recommend to me, I really enjoy mixing up my style a bit every now and again!

It’s only fitting since I’ve spoken about my new additions to my body surgically that I talk about my new pretty addition. I got myself a new tattoo on my ribs this Christmas Eve, I feel quite self conscious about this being an open surgery so I decided to get something nice to even out my feelings about my body. I know it’s not everyone’s cup of tea but it’s my way of coping with my body changing so much not by choice over the last few years! I got a stag tattood because I absolutely love them and I’m considering getting some thistles around it and blackwatch tartan as that’s “Duncan’s tartan” and I like having a bit of remembrance of him on me but I also really like the Scottish theme because obviously I am Scottish! It’s fully healed now which is a good sign because it’s only 2 weeks since it was done and it’s been totally healed for a week! I hope this is a good sign for surgery and fingers crossed this means I heal alright after the actual surgery haha! 

If you’ve made it this far I’m impressed you’ve put up with me for so long! Thank you all for reading and happy 2017!

Jen x

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