IBD DAY

IT'S WORLD IBD DAY!!

So today is the 19th of May, and that means one thing, IBD day. This is more than just a day to raise awareness for Inflammatory bowel disease, this is a day where people like me can share our stories, journeys and experiences with others who understand and have probably gone through similar situations. Today helps me alot. It allows me to talk to other IBDers without any stigma. It allows me to share photos and stories about my journey, without any stigma. It's great. I know it shouldn't take a special day to be able to do those things, and in many ways it doesn't, I talk about Crohn's a fair amount, but IBD day let's me not worry about people being weirded or completely grossed by the subject matter!

This is my day, I can talk about as much poo as I want to!

Today is about everyone with IBD. Today is about everyone who has had backlash, rude comments made about their illness, dirty looks from coming out of the disabled toilets, the oist goes on. 

TODAY IS FOR YOU.

So happy IBD day, love your Crohn's and Colitis, wear it with pride, be proud of you, you're doing a great job.

I HAD A FLARE

Okay, so this post might be a little bit long so grab a cup of tea and get yourself comfortable!

Before we start, let's give you all a bit of a background story, just so as you're caught up with what's been going on. So in April of 2019, I got taken in to hospital with really bad back pain, started urinating blood too (not a good sign). I thought I just had a UTI and it would go away with a few antibiotics, like they normally do. Turns out, I was VERY wrong! So after sitting in ambulatory care for almost 8 hours, I finally got taken up to a ward and pumped full of antibiotics and fluids, unbeknownst to me what I was actually being treated for. Anyway, this went on for a few days until one of the junior doctors decided to casually slip into conversation that I was actually being treated for SEPSIS. I never in a million years would have thought something like that could happen to me, but, here we are! It scared me to death, the big 'S' word. I was quite literally shaking (also partly caused by the incredibly high fever I had at the time)!

Due to the fact that i was being pumped full of God knows what, the doctors decided it was best to take me off of my Crohn's medication. At least until the Sepsis had been treated. I was fine with that, fix one problem at a time, sounds like a plan. However, what they failed to tell me in that moment is that my liver function had dropped by enough points to cause slight concern due to these specific tablets. So I got taken off of them permanently. For the most part I was doing fine, still in remission for my Crohn's, I finished my two week stint in the hospital, recovered from Sepsis, didn't have any horrific problems, life was good, for about a year!

And we welcome you back to the present day of Easter 2020! (Includes some pretty graphic details, sorry)

I had been having stomach ache for a few days, but me being me thought nothing of it. I took some painkillers and on I went with my day. Because I was not taking any medication specifically for my Crohn's there wasnt much else I could do! However, one morning, at about 4am, I needed the toilet, really urgently. I had to get Adam to push me out of bed and help me to the bathroom because I was doubled over in pain. Once I sat down, it fell like a waterfall. I had my knees tucked in to my chest, a hot water bottle wedged between my thighs and my stomach, draped in a blanket. It wasn't a pretty sight! Once I was finished, I didnt feel any better, which is weird, because I normally do! So I went back to bed to try an get some more sleep. DID NOT HAPPEN! I was in so much pain, the pain relief wasn't touching it, the hot water bottle wasn't helping either. Adam started to worry at this point, he's not witnessed a full on flare before, so he was allowed to be freaked this time!

Nothing that I was doing was helping with the pain, so I made the decision to go to A&E. Because of the whole COVID-19 stuff, it was a pretty quick process. Was about 10 minutes from walking through the door to being seen by the triage nurse. I got taken through to a cubical where they did an ECG, and general poke about at my tummy. I also had an x-ray done on my chest and lower abdomen. Turns out, my year in remission had ended and my Crohn's had become active again, yay! So, again, was pumped full of fluids and antibiotics, sent to a ward and the next morning was told I could go home. This confused me a little bit because they sent me home without any medication. I was having an active Crohn's flare and they hadn't put me on anything to help with that- didn't make sense tbh!

So off I went, and surprise surprise, I was back in A&E a week later. I was sent on advise by my IBD team, because, obviously I hadn't gotten any better! So I had the same tests done again, aswell as a few more just to add on the end! My inflammatory markers came back at over 200 (they're meant to be about 7) so I was in for another night! Luckily, it was only one night that I needed in the hospital, I went home the next day but this time, they actually gave me medication to help! They put me on a 9 week course of steroids, gave me a weeks work of antibiotics and were putting a plan in place for the long term treatment. This, I was happy with.

It's been 3 weeks since I left the hospital for the second time and things have been rough but that was expected.  I'm still not back to my old self due to pain, muscle aches, fatigue, etc, but I've managed to go back to work and that's pretty impressive! Theres still a long way to go but I can see light at the end of the tunnel (sometimes).

It's about time

It's about time that I say a massive thank-you to everyone who has helped me through my journey so far.

To my mum,
You are my rock. I don't even want to think about how my life would have turned out if I didn't have you standing my by side. You have gone to every hospital appointment, every blood test and every infusion. You've been there through every tantrum, every emotional breakdown, every bad day but you've been there through every happy memory too. When I finished physio and when my infusions stopped, all the rugby games that I've been well enough to attend as well as all of the holidays and day trips that we've had together. The amount of good out weighs the bad and I'm really greatful to have you in my life. I want to thank you for putting up with me and being patient, even when times got tough. With one look you can cheer me up and make me smile for the whole week! I love you.

To my dad,
You do so much for me, without even trying! With one stupid joke, you have me belly laughing for days. You have so much going on with your own health and you still somehow manage to put me and my brother before everything. We are your number one priority and I will never be able to repay you for all of your time and love you give me. Even if we do clash sometimes, you're my dad and I will always appreciate you.

To my brother.
You can be a right dick sometimes but I am really thankful that you're my brother. I want to say thankyou for always putting up with being the brunt of all of my temper tantrums. I never mean anything horrible that I say about you and you know that. I really do appreciate your patience and tolerance with me. Yeah, we argue, but that what siblings are meant to do! We always have each other's backs when shit hits the fan though, no matter what. Matt, I don't say this much, but I do love you. Thankyou for being the best big brother I could have asked for.

To Ben,
You're actually a gem of a human being. Even through everything that has happened in your own personal life over the last three years, you had been my support through everything. From physiotherapist to psychologist to personal BBQ chef! You have become a huge part of all of our lives in the Halmshaw household and I know that we are all extremely greatful for all of the help you give us.

To Adam,
Thankyou for everything. Thankyou for keeping me sane and for loving me through every minute of my crazy life! I know it’s been hard and the road has been long but you’ve stuck by me and I will never be able to repay you for that. You’ve gone to hospital appointments with me, held my hair back while I was throwing up, given me all the ‘get well soon’ cuddles and have been a human pillow every time I needed you. I love you so much and I can never thank you enough.

To everyone else,
Your stories and tales of how you deal with crohn’s and colitis have really helped me through the last 5 years. You guys have made me laugh, cry, feel pain and great joy all at once. All of the tips and tricks that you guys have taught me, thank you. I’m forever greatful for your unknowing help.

THANKYOU

It all gets a little too much

So this one has taken a long time to write, so bare with me.

Life just get a bit hard sometimes.

I wasn’t ready for the events that I would have to encounter in my short life so far, but I’ve had to deal with them and get over it.

The world expects you to be brave all of the time and smile like nothing has happened.

Well it had happened.

And I’m NOT okay.

I struggle but I fight and sometimes I lose. I’m okay with that. I can admit defeat. But I need time to process that defeat. I’ve had to be strong for so long that I sometimes forget to collapse, and lift the world off of my shoulders.

I’m trying to survive and I have to keep telling myself that I’ll be fine and I have to keep my head up, be strong but it’s hard to remember sometimes. There are days where I just want to curl up in a ball and wish the world away. I don’t want to die. But I don’t want to live with this swirling around in my head. In between a rock and a hard place I guess.

I think the worst part of it all is, that I can’t pin point a specific event that has made me feel so sad in myself. I have Crohn’s disease, big whoop. I’ve had to deal with that for 5 years now, so that can’t be stressing me out too much. Admittedly some things within my little world of Crohn’s are changing, but I’ll get on to that later.

Is it because my dad is sick?
Or my mum is having a hard time keeping our family above water?
Is it because I’m worried about how my life going to shit will effect my relationship?
I don’t know.

It could literally be anything at this point.

The third week in May of this year, I got really bad back pain. I went to the doctors, had a routine uti, no big deal, week of antibiotics and I’d be good to go. HOW WRONG WAS I? It turned out that my “routine uti” was sepsis, caused by a burst cyst in one of my kidneys- not fun btw. I ended up being in hospital for two weeks and after having 5 cannulas fail, I had had enough. I made them give me oral antibiotics and they sent me home. I was in pain and I was so tired it was unbelievable! But now I’m back at work full time after having the whole of May off and physically I’m doing pretty good. Mentally? Well, that’s why we’re here!

Anyway, the three different types on antibiotics I was on, in the two weeks I was in the hospital, decided to fuck my liver up. Therefore, I’ve been taken off of my Azathioprine and we’re in discussion about going on Vedolizumab. Not an easy one to pronounce there!
 But hopefully it’ll work and keep my symptoms at bay.

On top of all of that, my dad had started dialysis. He had this tube in his stomach, which allowed him to drain bad fluid out and replace it with good fluid around the kidneys. It was pretty cool and meant that he didn’t have to visit the hospital three times a week. However, he caught something called Peritonitis. Nasty piece of work. Within 7 months, he’d caught and been treated for peritonitis three times. While on antibiotics the second time, he got a phone call saying that there was a kidney ready for a transplant. What a shit time to get such good news. Because he was so ill, his body wouldn’t have coped with the transplant so the operation didn’t go ahead. Back to the bottom of the list he went. But every time you get peritonitis, you’re taken off of the list until three weeks after the infection has cleared. So dad’s chances of getting a kidney anytime soon are SUPER LOW.
The third time he caught Peritonitis, was the worst. The doctors at the hospital decided to take the tube out of his stomach and close all the wounds up with staples, ended up having like 13 or something. The have him a neck line so that they could see if after a month of not doing Peritoneal dialysis, that would lessen the chances of him getting Peritonitis again. In the meantime, he’s doing hemodialysis through the neck line, meaning he’s having to go to the hospital three times a week to get dialysis.

No wonder my mums having a mental breakdown! She’s the one who looks after us. She’s the glue holding us all together. What happens when she falls? I mean, we’re all there to pick her back up, of course we are. But I’m just scared that my family will never be the same.

I probably should go and see a shrink so they can pull the shit in my head apart and tell me I’m being ridiculous and over thinking it all, but I know that’s exactly what they’ll say so why go in the first place? I fully understand that talking to someone will do me good, but that’s exactly why I have this blog. To be my own little on line diary. I can write almost anything down on here and the weight of it all has lifted off of my shoulders.

Thankyou for helping me clear my head a little bit sometimes.

If you smile, the world smiles back

I'm trying my best to be a more positive person...I'm finding it pretty difficult by the way! It's not that I don't wan to be positive, I do, it's more the fact that the world is a pretty rotten place. I have this thing where whenever I think I'm beginning to be happy and everything is just folding together nicely, it goes to shit.

Take my Crohn's for example. I have months of not having a flare and feeling good about my situation. Stool samples are normal and blood tests come back with the right numbers. Stomach pain is at a minimum and my achey joints aren't too inconvenient and then BOOM. Flare. Just when I didn't need it. I was so content with not having to deal with the crap (literally) of Crohn's and then here we are again, back at square one.

Another example is the whole mental health thing. I don't have bad days as often anymore because I think I may have figured out how to work around the black hole that is my brain, but there is always the loop in the distance that is just begging to drag me back to hell. A tiny little voice at the moment can sound like a thousand screaming monsters in my head on a bad day. I can't hear myself think and as I said previously, I get dragged back to hell.

However, my motivations for smiling my way through the day include;

• Payday!
• My dog.
• The love in my mum's eyes when I smile (she gets that proud parent shimmer in her eye whenever me or my brother come home and don't scream the house down in rage).
• The fact that I have such a good support network around me of friends and family that remind me that I have no reason to get angry or upset over the stupid little things. 

I've learnt to be thankful for what I have and for those who help me and that's what gets me through the tough days. If you have people who love you then you are one of the luckiest people on the planet, and that is something to be happy about.

So smile once in a while, the sun will seem brighter, the hugs will seem cosier and everything will be better.

I need to get this off my chest

I want to talk about something really important. Maybe the most important thing I will ever talk about in this blog. I want to talk about my mental health.

I'm going to be straight up, I'm not in a good place. I'm struggling. It's all getting a little too much. I know I can get through it, the fog in my mind will have to clear up eventually I guess. I just need to stay focused on what's important in my life and not get distracted. I CANNOT lose that focus.

A friend quite recently said to me, "you have so much shit to deal with on a daily basis, you're allowed a wobble every now and then." Those words spoke volumes to me. Even after everything that they have been through in their own life, they still took their time to help me through a hard time I was having- which in hide-sight, was nothing compared to the trials and tribulations they have had to face. They took the time and effort to help me, when they didn't have to. They talked me out of giving up and I will forever be in their debt.

Okay I need to stop putting it off.
This is a hard topic for me to talk about. I don't know why, I just can't find the right words to say.

I just want the world to stand still. I want to get off the ride. I need to take some time to breathe.

LET ME BREATHE.

My mind is just a blob. I'm confused. I don't know how to express the feelings that I'm feeling.

The worst all started a year ago when I had a really bad thing happen to me. I don't want to say what, but it was the worst things that will probably ever happen to me and I will have the memory of that terrible ordeal for the rest of my life. I couldn't comprehend how someone could do that to me, I still can't. However, the last few months have been extremely difficult for me. I haven't been able to stay focused on the important things. Everything has become scrambled and I can't see the light at the end of the tunnel.

I just want to feel okay again.

I don't really know how to describe how I'm feeling in words, expressing my emotions isn't a skill I'm good at! Most people around me don't even realise that I'm not the same person they think I am.  I put on this really bubbly act when inside I feel like the walls are caving in and everything is crumbling around me.

But it's okay that I feel this way. Everybody has good and bad days. Some days just turn in to weeks and sometimes those weeks turn in to months. I've tried to put on a brave face but the fake smile just isn't cutting it anymore! I need new tactics. Maybe one if them could be "CHILL THE F OUT!!!"
If you hadn't noticed I try and laugh as my owm missfourtunes because then nobody else can judge the way I personally deal with these tricky situations.

Anyway, life will hopefully get better soon. I have some good people around me who are supportive and understand. I try not to put too much strain on my parents, they've both got their own issues going on, never mind whatever's going on in my head!

But if any of you out there are having trouble, reach out. It could be to a teacher, a doctor, a family member or a friend. The ones who love you will always have your back.

Still looking for answers...

Yep, you read that right. It's been four years and I'm still no closer to knowing why I feel so rotten. The doctors don't know if it's the medication that I'm on, the fact that school is stressing me out or maybe I'm just that really annoying patient who gets all of the systems of a flare but there is NO medical evidence to prove that. I mean ZERO results have any trace of my inflammation levels being any higher than they should be. I've had an MRI, a Colonoscopy and and a Endoscopy as well as, what feels like a million and one blood tests- just to triple check that the lab hadn't missed anything.

I JUST WANT SOME BLOODY ANSWERS.

I want to know why I've been being sick four times a day even though I'm not eating enough to produce that much vomit. I want to know why when I'm not physically throwing up, it feels like I should be. I want to know why I need a nap for 24 hours of the day- everyday. And my main question is why do my body constantly to try and kill me? Like, I just want to eat chicken nuggets in peace without it feeling like I've been stabbed in the gut. Why chicken nuggets? Why couldn't my intestine not think broccoli was poison? 

I want to know my back feels like I've been piggy backing Jack Black all day. Like it flipping kills. It cracks everything I sit up straight and then gets stuck (that's VERY uncomfortable by the way!)

Don't get me wrong, I have an undying love for our NHS but I really just want someone to have a definitive answer for me. I know it's not their fault that my case is an absolute nightmare but wouldn't it be nice?

I am 100% aware that my situation is far from the worst case scenario, but over here in my own little pit of despair, it hurts. It feels like my life is being run by this disease and I don't want it to. I've had enough of being in the unknown about my own health. It's possibly the most annoying situation I've ever been in, and I grew up with an older brother! Yeah, this is even more annoying than him kicking my shins under the dinner table every night for three years. My level of annoyance has flown off the scale that my brother sits on!

It's nobody's fault that I've been put in this situation but at the moment, it feels like the world has a Vendetta against me. Why is this world making it so difficult for me to be able to do everything an eighteen year old should be able to do? I don’t have the energy at the end of the day to go out and party, I struggle keeping my eyes open for an entire day at school (and that’s only six hours- that’s a quarter of the day) I should be able to keep my eyes open for six hours! I want to be able to go on holiday with my friends and not have to worry about needing to go to the hospital and having to take all of my medications with me through customs- which is extremely hard to do with the amount of Codine that I get prescribed! Going out for a meal is even difficult if it’s to a restaurant that I have never been to before, not knowing if the food was going I have an explosive reaction in my intestine, making me really sick.  Basically, I’m a ninety year old lady, doing ninety year old lady things. I have two naps a day usually, I go to bed at 8 o’clcok, probably watched the majority of films on Netflix due to me not being able to get off the sofa and I drink tea all day. Some may think that sounds like I’m living the perfect life, trust me, it gets super boring.

I JUST WANT MY NON-INFECTED COLON BACK!!!