What’s it like being chronically ill?

Let me tell you exactly what it’s like being chronically ill…

First of all I’m going to explain to you what it’s like to be chronically fatigued. Fatigue is not just tiredness. Fatigue is like being tired times 1,000,000. Fatigue is where you feel physically and mentally exhausted. Sometimes too weak to walk. Fatigue is sleeping for 14 hours and waking up and still being exhausted. Fatigue is something that no amount of energy drinks, pro plus or numerous cups of coffee will help. Most people who have a chronic illness are not only battling their illness but are also battling extreme fatigue. I battle fatigue every day, recently it’s been the worst it ever has. I usually exercise at least four times a week. The past few weeks I think I’ve been to my fitness classes 4 times. The other day I was popping to the shop with my other half, I was walking down the two steps outside my house when my legs nearly gave way underneath me because I’m so exhausted. Fatigue is a total and utter bastard! It’s something that almost always beats you. It’s not as easy as, put it in the back of your mind and get on with your day. Most of the time, that’s just not possible. 

It’s now April 2017 and since the new year I’ve had 4 hospital admissions. I’ve been fighting for the past four months with my IBD consultant because he hasn’t been listening to me and hasn’t been looking into why I keep being admitted into hospital. So not only have I been battling my illness, I’ve also been battling with my healthcare professionals. Each time I go to hospital, my symptoms become more and more severe. Last time my veins shut down, my bowel stopped working, I was constipated beyond belief, my inflammation markers in my blood shot from 6 to 91 in 12 hours, I was on IV morphine, things really weren’t great. 

Since leaving hospital the only thing that has improved is the severity of the pain. 

Having a chronic illness is a constant battle. You have to battle through your day, battle with your own body going against you, battle with medical professionals, fight to get through work, fight to get out of bed, you get the picture. Nothing is easy. I feel constantly guilty on the my family because of how often they have to take me to hospital, because of how often I have to let them down and because of how much I have to rely on them. I feel guilty on the few friends that haven’t turned their back on me because I’m so poorly I barely get to see them and when I make plans 9 times out of 10 I have to take a rain check. Most of all I feel guilty on my fiancé. He has to fight this with me every single day when really it’s not his fight to fight. He sees me every day, he sees how badly it’s effecting me every day, he has no choice but to be my carer as well as my partner. He’s the one that usually has to rush me to a&e in the middle of the night when he has work the next day he’s the one who spends most of his spare time at home with me because I’m too ill to go anywhere, he’s the one that mostly only sees the worst side of me because I’m so exhausted and grumpy to make an effort in anything. I’ll stop listing everything now otherwise we’ll be here all day. 

Basically without him and my family, I’d have probably ended it all along time ago. 

Being chronically ill makes you realise all that you took for granted when you were well. Being chronically ill sends you through some really dark times. It makes you depressed, gives you anxiety, makes you frail and makes you want to give up.

Being chronically ill is feeling sick almost constantly. Being chronically ill is eating a lovely meal that sicking it back up 10 minutes later. Being chronically ill is not being able to eat a nutritious meal because it sends you’re stomach into spasm and you end up being in agony for hours after. Being chronically ill is eating dry, bland food with no nutrients. 

Having crohns is… fortisip. 😷

Being chronically ill is hard. 

Your body fights against you and constantly lets you down. Imagine trying to improve something when all it does is is the complete opposite of what you’re trying to achieve. It’s exhausting. 

I’m thankful for being alive and not being as poorly as other people. I’m thankful for the support off my family and jonny. I’m thankful for the few people who haven’t had enough of me and are patient with me. I’m thankful for the people I don’t have to see everyday or have in my life everyday but who are still there for me. I’m thankful for my dog. He’s super loyal.

It’s the little things in life. Don’t take anything for granted! 

N x

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Life As An Infliximab Patient

I know its been a while since my last post, however i’m back with my next one! 🙂 This is going to be about my time and what my life was like on infliximab. I hope i don’t bore you too much ey?! I do these posts so people can have an insight of what it’s like to be diagnosed with and live with a long term illness. so… here we go i guess!

When i first got put onto influx, i started a diary. In this blog i’m going to be narrowing down what I wrote in my diary in hope to give other people a true answer to what life is like being on infliximab. Instead of people giving others false answers and false hope, this is a brutally truthful response to that question. For anyone starting infliximab or who is about to start infliximab, don’t be put off by this. Always try new things, just be prepared for new things failing. Remember, Everyone is different 🙂

February 8th 2015: It’s a week until i’m supposed to be starting infliximab and guess what? I’m ill. I have the cold or the flu or something. either way, if i can’t shift it by Thursday theres not a cat in hells chance that i’ll be able to start infliximab as planned. gutted can’t even cut it. As most of you know i’ve pretty much waited 4 year for this. I will be very angry if it doesn’t bugger off!! Here’s Hoping!

February 10th 2015: So, I ended up even poolier yesterday (if that’s even a word! If it wasn’t, it is now! HA!) anyway, yeah. I was that poorly i had to get an emergency appointment with my GP. Bloody fantastic isn’t it?? When something goes right, something else always has to shit on it!! Brilliant!! I’m now on antibiotics. Which means, inflix is a no go this week. Better phone my IBD nurse and cancel!! Fingers crossed i can actually have it next week!

February 11th 2015: Dammit! i’m rather down today. woke up feeling even more rubbish than i was yesterday. If these antibiotics don’t start working soon i’ll cry. The chances of ever gearing inflix are slipping further and further away which means, the chances of getting better are slipping further and further away. LIFE’S JUST GREAT!!

February 12th 2015: I had some good news today! I have my second date for infliximab which is next Thursday, the 19th. Hooray! At least I have one more thing to try before I have to get surgery. I’m feeling a little more nervous about starting it now because i won’t be in the clinic with my IBD nurse. I’m going to be with a load of strangers. Even though my mam and Jonny (my partner) will be there, they aren’t actually allowed to come in the room with me 😦 I can’t even go for a wander! I have to sit in the same room for four hours! I’m definitely not looking forward to it. I hate this illness. I’m fed up! I can’t even get intimate without being in pain. It’s pathetic. I feel pathetic. I feel useless, I feel like a burden and i genuinely feel fucking shit. I’ve been suffering quite badly for the past two weeks or so with really bad joint and muscle pain. This is not something a 21 year old should have to feel like!!! I’d love to know what i’ve ever done to deserve this you know?!!

Friday 13th of February 2015: On a brighter note, for it being Friday the 13th, nothing bad has actually happened today so that’s a surprise!! :’) I think i’m having second thoughts about going onto this treatment. Is that bad?! I’m just so scared. Will it be worth it?! I can’t believe i’ve willingly chosen to go into hospital every few weeks, be injected with some crazy drug, no doubt be poorly for a few days after and have to do that repeatedly. Like really?! I must be crazy right?! Or am i just Desperate???

February 15th 2015: It’s now only 4 days until i get my inflix. This stuff better work!! I’ve been really bad for about two weeks. I’ve had a really bad tummy. So bad in fact, I just pooed out a load of bile along with the food i had only just eaten. It’s just getting ridiculous now! I better feel some benefits of the treatment instantaneously! I can’t cope being this poor anymore, I can’t cope not working. It’s not fair on me, it’s definitely not fair on Jonny. I want to be able to pay half of the bills, I want to be able to go for meals again, I want to be able to do those normal things that couples do!! I can dream ey?!

February 18th 2015: It’s Wednesday, almost D-Day! I’m a little worried but a little excited at the same time. I think. I don’t even know what I’m feeling anymore. :s I’m worried about the side effects, worried in case it doesn’t work, worried about how it’s going to make me feel afterwards, worried how its going to affect me. You name it, I’m  worried about it. But, on the other hand, I’m also excited. Excited about the future, excited to start feeling better, excited to start working again, excited to be able to do things again, excited to be able to go places, excited to be able to go for meals, excited to enjoy life again!! But, again, saying all of that, I’m scared incase it doesn’t even work and i can’t do any of those things. Again!! I’m so glad i have Jonny and my ma to support me. I honestly don’t know what i’d actually do without them!!

February 20th 2015: IT’S INFLIXIMAB DAY!!! Or so we thought! Got to the hospital only to find out there had been some massive fuck up and someone hadn’t filed my consent form! As my IBD nurse and consultant were both out of office I have to wait until next week now!! FUMING doesn’t even cut it! there is always something!!

February 22nd: After a rubbish day on Thursday, my stepdad took us all out for a meal to our favourite restaurant. Ever since, everything i eat is getting thrown back up, i’ve been constipated, unable to eat and just being sick. I know I have a blockage. Guess the hospital won’t do anything. next week can’t come quick enough.

February 26th 2015: HOORAYYYY!!! FINALLY! Yesterday was the day of the inflix. I was waiting anxiously in the room with my mam. I was on my own as the only patient that was there had left. After what d\seemed like a life time of awkward silence, the conversation started to flow and i eventually felt a bit more at ease. Natalie (the nurse) eventually came and put my cannula in while Ian (the other nurse) mixed up my treatment for me. I felt sick i was that nervous. I felt like i was at a job interview haha!! For once the needle didn’t actually bother me and for once, it didn’t hurt! Bonus! Eventually I was hooked up to the machine and the four hour wait finally started. It was THE longest four hours of my life!! I think I died and came back to life :’) I took my assignment in to type up and keep me occupied but i couldn’t focus so i scrapped that idea. The infusion itself wasn’t that bad. It was long and boring but as long as you have things to keep you occupied it isn’t that bad. I was home. I was tired and in desperate need of a nana nap. When I woke from my nap I felt incredibly sick. A feeling which i couldn’t shift. Stupidly me and Jonny thought it would be a good idea and go to the cinema. I spent 90% of my time in the toilet trying not to be sick. I got home, ended up with severe diarrhoea and then ended up being sick until about 1am. I couldn’t help but hope that it wouldn’t be like this after every treatment. I don’t think i could cope.

NOTE TO ANYONE STARTING INFLIX, AFTER YOUR FIRST AND SECOND TREATMENT, STAY AT HOME. DON’T GO ANYWHERE AND MAKE SUR EYOU JUST CHILL OUT.

March 14th 2015: Inflix day was Thursday., Turns out round two of infliximab wasn’t any better. Again, I was fine during and after the infusion. for a little bit anyway. I wasn’t tired this time and didn’t need a nap. However, don’t be fooled. it only lasted a few hours. I ended up throwing up again on the night time. Worse than the first time. Even anti sickness tablets couldn’t stop this. Apparently throwing up on inflix isn’t a good thing. It is common and I need to ring my IBD team ASAP and make them aware of this. For god sake!! Why can;t i just tolerate meads?! What is wrong with me?! I guess it’s not that bad really? It could be worse? Theres a chance they’re going to stop my infliximab now. I wish I’d just opted for surgery!!

NOTE, FOR ANYONE STARTING THIS DRUG. DONT BE FOOLED BY FEELING GREAT AFTERWARDS. IT MAY NOT LAST.

After that, I had another two treatments and things got better. I got better. I planned to go back to work and everything. But, as usual it didn’t last. I soon ended up really poorly again. my IBD team eventually decided that the inflix wasn’t working. They started doing further tests and started looking into doing surgery. This didn’t take very long to decide or to do. About 3 month in total. I’ve had my surgery now. But that’s a different story for a different day.

Bottom line, although infliximab is made out to be a wonder drug, don’t be fooled and never get your hopes up. Don’t get me wrong, for some it may almost cure, but for others its just a massive waste of time. Always try everything. Just know, it isn’t all rainbows and unicorns. Life with IBD is hard, it’s not pretty but fighting is all we can do.

Until the next time, much love!!

Crohn’s – A burden

Its been a while since my last post. The reason? Well I kind of forgot my password! Typical of me.

Anyway, this post is about Crohn’s Disease and relationship struggles based on me and my current partner.

I’ll start back at the very beginning before I was diagnosed. I was 17 at the time it was around February time 2011 not long after my great grandma had passed away. I had just quit my first ever job selling shots and photo keyrings in bars and nightclubs around the northeast. Honestly? I was loving life, having fun, socialising all the time, drinking, partying. Life was good. At the time of all of this, Jonny (my partner) had just walked into my life. We were newly in a relationship, I was still living with my parents and he stayed over almost every day. He had pretty much moved in over the space of a few months but it was good. We loved each other, we were having fun and enjoying life.

Suddenly my health deteriorated. I was going to the toilet more often than normal and I had started bleeding (from my bum). I told Jonny straight away and he urged me to go to the doctors. Given the history in my family (my mam has Crohns and so does my auntie) I didn’t want to worry my mam and I didn’t want to tell her but I knew I had to. I told my mam so everyone important was aware of what was going on. I went to the doctors with Jonny by my side. it could have only been 4 months into our relationship and this was happening. However we were stronger than ever and Jonny had the chance to run but he never. 3 and half years on and we are still stronger than ever.

Anyway at the time I wasn’t really that poorly. I was only bleeding and having irregular bowel movements. I wasn’t losing weight, I was putting on. I wasn’t being sick and at first I didn’t have diarrhoea. I was a lucky one and the doctors diagnosed me straight away because of the history in my family. I was put on some meds which didn’t agree with me and I ended up in hospital for 3 days. Still Jonny was by my side alongside my mam. After that hospital admission things were ok, everything apart from my fatigue. I was becoming increasingly tired and started to become isolated from the world. Things started to get worse and worse but still I wasn’t vomiting, losing weight or having diarrhoea. Very uncommon in crohns I know but at least I ad been diagnosed.I was attending regular appointments with my consultant and he was telling me that the symptoms I was having sounded more like IBS so I was deteriorating and being ignored. I was starting to become more of a burden than a girlfriend. We weren’t going out as much as we used to. We spent most of our time cooped up in my mams house. What a great life that could have been!

This all went on for a good year to a year and a half. Being ignored off my consultant and suffering daily. By this point I was experiencing diarrhoea but still no sickness or weightloss. I guess I was lucky in that aspect. Finally I started to get answers. After having to ask for a colonoscopy i had proof that my ‘IBS’ was in fact crohns. I was more of a burden on Jonny than I had ever been before. Spending most days in bed, in the house with very little socialisation. I told him he could go out when he wanted etc etc but he told me he would rather be with me looking after me. I had definitely found THE ONE! I fell pregnant july 2013 but was too poorly to carry the baby and by september I was no longer pregnant. This was heart breaking for the both of us but instead of tearing us apart it made us closer and stronger. I couldn’t have got through this without him. A year on, its still incredibly hard and we still have a few tears now and then but we know one day, the day will come.

After that and still having the same symptoms my consultant finally pulled his finger out his arse and did something for me. I was now working as a carer and at the beginning I was fine but just before I went on medication I was at my worst I’d ever been. Still isolated but socialising a little bit more I was still a burden on Jonny. I felt like I wasn’t a girlfriend I was a burden. I was weighing him down. It got to the point where I was telling him he was better off without me and actually told him a few times to leave and go and find someone better. Did he? Nope! Truthfully when I said that to him I didn’t actually mean it and I would have been devastated if he had actually done what I had told him.Lucky for me he never and he stayed by my side.

Anyway… sidetracked kind of. Sorry. Back to the blog. Eventually I was out on some medication. I was put on methotrexate at the beginning of 2014. FINALLY! I went into clinic to get the details etc etc and then it came, a choice I had to make whether to have children in the near future or to have treatment. After recent events still raw you can imagine I was broken. Devastated. Obviously I made the right decision to go on treatment and attempt to get better Jonny agreed that this was the right thing to do so that’s what I did. Little did I know that it was going to be a massive waste of time! A further four months on and on the medication, no improvements whatsoever. NOTHING! Apart from migraines and achy bones. Great, for two years all i wanted was to be better and the only thing that was happening? I WAS GETTING WORSE! Lucky for me, my relationship wasn’t suffering and although I still am a total burden on Jonny, we are still strong and we support each other. Still slightly socially isolated but still together. That’s all that matters. However it still doesn’t stop me from feeling guilty on a daily basis! We have been together 3 and a half years and we are yet to go away together, even in the same country. I feel awful! Not even a poxy camping trip.

I know that’s not all that matters but we cant do things that normal couples do. We are restricted, isolated and I am to blame for that. We cant even go out to dinner together. JUST IN CASE! Its crap. All I want is to be able to have a normal life for me and Jonny. I’m thankful more than anything that he is still by my side.  I hope that never changes. If it does? I guess I’ll have to understand. I will understand but lets hope it never comes to that. I love you Jonny ❤

thanks for reading x

The Pred Diaries

So, i’ve had Crohn’s for two years now and i’ve always refused steroids. Unfortunately that changed quite recently as i’ve been really poorly and not actually able to tolerate food so, i bit the bullet, picked up the phone to my IBD nurse and thats what happened. She rang me back and told me what i’d been fearing ‘Your consultant has decided he’s going to put you on steroids’. i was pretty gutted but also over the moon at the fact soon, i’ll not be in pain. well i hope. i’ve also been put on fortisep for a couple off weeks to try and give my bowel a rest as well as methotrexate. God, i must be on about 18 tablets a day now and 28 on a friday. Anyway cutting to the chase, the blog. as promised this is my pred diary. enjoy!

Day 1: I got my pred today! yey! they told me to start it in the morning but quite honestly i wanted to get it in my system so I took it at about half 4 in the afternoon. Nothing really happened though which is to be expected. I was still having the usual pains etc so that was that however…

Day 2: took 8 pred this morning and to be quite honest i was feeling great. full of energy, full of life. Like a new woman. i started work at half 9 and i havent even had a nap. I go back to work at 17.30 then i finish at 7 then i’m going to the gym and for a swim. This is how great i feel. I hadnt had the munchies all day until about 3pm where my stomach just wouldnt fill. As i write this my tummy is grumbling but i must resist the urge. I cannot gain anymore weight. So pred is good! so far anyway. it is only day 2 and i’m on it for 8 weeks. i’ll post again tomorrow. thanks for reading! and wish me luck xxx 

Me, my Crohn’s and my partner

I write this as I sit here with a glass of wine in one hand and a jar of fluff in the other. I’ve had a few days that haven’t been so bad, well apart from being very fatigued but I slept most of the weekend so I’m feeling ok today. This post is about me, my illness and my partner. So, I met jonny just over three years ago we’ve been together ever since. Not long after we had got into a relationship, and he’d pretty much moved in to my parents house I started having the first of my bad symptoms. That was when I had started bleeding. It was jonny who encouraged me to go to the doctors about it, he has literally been there from the day I was diagnosed right the way through my journey and still is of course. He has came to most hospital visits if he has had the time off work and supports and comforts me through every good and bad time. To be honest, although he understands and has been absolutely great I still feel like a bit of a burden on him most of the time. Because I have pretty much always been ill this means we haven’t been able to go on our first holiday together, go places he wants to go with his friends like the V dubs festival etc etc. even down to like going out for a drink or a meal, most times we can’t even do that. We spend most of our time in the house of at my family’s houses or very close friends’ house but even then that sometimes proves to be quite difficult. There’s been times where I’ve said to him that he’s better off without me and that he could have a better life with someone else but not once has he even contemplated leaving me. Don’t get me wrong, without him I probably wouldn’t be where I am today but knowing that I’m stopping him from living his life, restricting him so to speak absolutely breaks my heart but I’m glad I have him today and I’m glad he doesn’t want to leave. He’s my rock, my best friend and I couldn’t have done any of this without him. We just keep telling our selves ‘when I’m better we will do this, that and the other’ even though realistically speaking I won’t ever be ‘better’ but I hope one day I will be in remission and free of the pain and suffering. Then we will be able to do what we want when we want and enjoy our life together. I know some of you may be thinking, why let it stop you etc? We’ll let me tell you, my biggest fear of going abroad is ending up in hospital. At the minute I see my Crohn’s as unstable and my main focus is getting better. When I’m better I will go onto bigger and better things. Go places we want to go, do things we want to do and be happy.

I think that’s all I can really write about this particular subject but I wanted to share with fellow IBDers in this situation that your not alone and to my friends and family how hard it is and how much of a struggle it is. I don’t think my relationship has ever been so strong. And the more we go through the stronger we get. Keep smiling and keep supporting each other. Through the good times and the bad. Thanks for reading guys. Until the next blog, much love! Xxxx

Part 2

So I’ll begin from where I left off. I’m writing this trying to fight against my burning eyes and fatigue. So I’ll more than likely have to stop and come back to it again. Anyway once I’d recovered from the pancreatitis and my Crohn’s had got a little bit better I had been offered a job in a care home. I obviously took it because life was great and I was feeling great I was working all hours over Christmas and life was good until Crohn’s popped up again. I wasn’t turning up for work because I was so fatigued and feeling crappy, it obviously didn’t look good so I managed to get a sick note off my GP. I took it into work, well actually my mam did as I was poorly then about a week later I had a letter through my door saying I’d been sacked. I was fuming but it was out of my control and there was nothing I could do. So I was jobless. Back on the good old dole. Job hunting again but kind of enjoying the break at the same time. Enjoying the rest. As time went on my Crohn’s got worse, I got more poorly and was constantly at hospital appointments. I was abandoned by my consultant for a year and a half and after continuously pestering my consultant and telling him that something wasn’t right and after him telling me for months that all my symptoms were IBS I eventually asked him if I could have another colonoscopy. Yes, I had to ask to have another camera up my bum. Because I knew something wasn’t right. Previous to that I fell pregnant but had that snatched away from me. I was fed up and needed something to be done. This time I didn’t have any drugs during the colonoscopy apart from buscopan cause I started having spazims and I was totally awake and having a good crack on with the doctors (as you do) and he came to my terminal ileum again and there it was, and it had spread! I wasn’t best pleased to be honest. Why hadn’t he listened to me! This could have been prevented! What a dick! Anyway from that I was given some more meds which I am currently on. I’m on methotrexate one and have been for four weeks. So far so good. Jumping back to just after the colonoscopy, I got offered another job at sevacare which I am currently working as a carer in the community looking after the elderly and disabled. I love it! But I’m finding it so hard at the minute trying to fight my fatigue and work. It’s becoming impossible but I refuse to let this get the better of me! I will fight and keep fighting until I can’t fight no more. All I want is a career, a normal life and although it seems impossible right now I will keep trying. Good things come to those who fight and be patient. So whenever your feeling down, don’t give up!

Im just going tot jump back to my childhood and my mam as i think this is why I’m who I am today and why I’m as strong as I am now. My mam, my hero, my role model and my best friend! When I was around threeish, my mam was really ill, like almost on her death bed. I was young and didn’t understand what was going on but I did know that my mam was poorly and could quite possibly die. She was hospitalised for a very long time and me and my brother were living with our nana and grandad. I can’t really remember much apart from her yellow pyjamas that she wore in hospital, her little teddy that she had which I now have and having awful dreams about her being in hospital. I can remember standing looking in my nanas mirror and imagining her behind me putting her arm around me and just crying for her all the time. That was a pretty hard part of my life to talk about because I literally lived in fear of losing my mam. Of my mam dying. It was awful. I can’t even begin to imagine how hard it was for my mam. She was given two weeks to live and if it wasn’t for my nana and grandad paying for private healthcare my mam wouldn’t be here today. Eventually after months in hospital she was released with a permanent ileostomy. We lived with my nana and grandad for a bit until she was strong engh to come home. She was on that liquid diet thing which I forgot the name of and I can remember me and my brother drank the ones that she didn’t like. My favourite was the chocolate and the toffee. When my mam came home me and my brother had to do a lot to help her and stuff. She even thought us how to change her bag. There was a point in my life where apparently I would only go to nursery if I had a bag on like my mam. I obviously have no recelection of this but my mam won’t stop mentioning it haha! All my life I lived in fear of my mam dying right up until the point that I got diagnosed and started to learn about the illness and stuff. I still worry but not as much as I used to. My mam is one of the strongest people I know. She is my rock. This is part two of my life story. I will keep blogging but it will be about the present. I hope you enjoyed reading! Thanks for being interested xxxx

Aside

Part 1. My journey

So this is my first ever blog about me myself and Crohn’s. This is my third time of writing it too, first one was too boring, second one got deleted as my phone died and this is the third. So let’s hope it’s third time lucky? So I’m 20 and have Crohn’s disease. A life threatening, life long illness. No cure and hundreds of side effects. Am I sick? As a bloody chip. But I’ve gotta keep on going don’t i? Can’t let this bitch take over my life can I? So I’ll start from the beginning when and how I got diagnosed. Looking back now I’ve had the symptoms of Crohn’s from the age of about 14-15. Yeah mad how I only got diagnosed 2 years ago isn’t it? It was my own fault though. The pains I was getting came and went every now and again and because they went away for so long at a time, I forgot about it and never thought anything of it. Anyway I hit 17 and noticed I’d started bleeding from my bum obviously I thought it was just piles at first but because I knew there wasn’t anything hanging out my bum I knew that shit was about to get serious. I knew that the amount of blood that was coming out of me every time I went for a poo was just not normal. Eventually I plucked up the courage to go to the doctors with my partner by my side. I went and seen my usual GP who was already aware of the history of Crohn’s in my family. (My mam got diagnosed in about 1996 and my auntie about a year before me) My GP examined my bum and told me that is was really inflamed. He did this while my partner was in the room. I felt totally violated, embarrassed and horrid. This is something no one should ever have to experience but I guess it was probably the best thing that ever happened to me cause if it hadn’t, I wouldn’t have ever found out that I have Crohn’s. Anyway after chatting with the doctor about symptoms etc. he decided to refer me to a gastroenterologist straight away. No pussyfooting around. It was at that point I knew that without a doubt I had Crohn’s. I told my mam everything and I think deep down she knew too but she didn’t want to believe that it was. We didn’t really mention it again until the appointment to see my consultant came through. I could see how worried my mam had became but I was still being just not bothered. My consultant felt my tummy and asked loads of questions. I remember that appointment like it was yesterday because it was red hot outside and even hotter in the hospital and I remember as he was examining me I was sweaty and my skin was all clammy and I felt totally and utterly vile but the more I thought about it the more hot and flustered I got so I just wanted to get out of there ASAP. Eventually the appointment was over. The outcome? Well it had to be the dreaded colonoscopy. I was 18 and getting a camera UP MY BUM! I was mortified! I had to wait for the appointment for that to come through the post but before that I had to go into the hospital for my pre assessment and get all my Bowen prep and stuff oh and so they could sit and talk me through this lush procedure I was going to have. I mean it made me feel so much better about it… Not! So, I think that was the week before or something and then the following week I had to follow this horrendous diet then take loads of laxatives. At the time I was working in a Chinese and they didn’t believe that I needed three days off. Trying to explain this to people that don’t really understand English was just impossible! I think I ended up going to work on the same night I had the procedure. Ass holes! Anywayyyy back to the blog, the day finally arrived and I swear when they said my mam couldn’t come with me I nearly cried. I felt like I was about to have an operation and felt like a tiny little kid all lonely and ugh it was awful! So I went through trying not to cry I got changed trying not to cry I got stabbed with a needle while they put a cannula in, trying not to cry. Go wheeled into the room trying not to cry and when I seen it was a woman I felt a whole lot better. I can remember lying on my side when she asked my to and my bum falling out the covers and I pulled the blanket over and then realised what’s the point so I pulled it back and said ‘I might as well leave that out’ I mean how bloody embarrassing. The doctor was like, well we will just cover it up for now. I swear she was trying not to laugh but I was nervous and you say stupid things when your nervous don’t you? Anyway they offered me this ‘sedation’ relaxation drug thing and I thought YES ILL NOT REMEMBER ANYTHING so I took that thinking yeah buddy and when she told me it was like being stoned I thought mintttttttt! However did it work? NO! I remember everything I mean every little thing! I was gutted but glad cause I found it totally fascinating. I had to stop writing this late last night and come back to it this morning cause my eyes were burning I was that tired. So I’ll continue 😊 I asked loads of questions as the camera went round and everything looked great until she reached my terminal ileum and there it was a very small piece of inflamed bowel. I asked what that meant and straight away she said, I suspect it’s Crohn’s disease. I was so glad that I finally had answers and that something could now be done about it. I wasn’t scared I was more excited to get started on some meds so my symptoms would bugger off. After that I had another follow up with my consultant and we decided azathioprine was a good medication to start on. I refused steroids and I still do because I already struggle to lose weight with the Crohn’s alone and don’t want to end up any fatter because of avoidable meds. Another reason why I refused them is because I know it’s only a short term fix. My mam was on and off them my whole life and she was great while she was on them but as soon as she came off them she was back to square one. To me that seemed pointless. Anyhow I started the azathioprine and all was going great until three weeks into taking it I had to go to A&E. It was June or July I think I know this because it was the morning of the air show and I wasn’t missing it! I went really early in the morning so it was pretty quiet and I got seen pretty quickly. The doctors were bamboozled as they couldn’t figure out where the pain was coming from. It wasn’t until they took some bloods that all became clear. The nurse came in and said your bloods have shown pancreatitis. I was like what the hell is that? Haha! She explained that it was inflammation of the pancreas but couldn’t understand how I had it as I didn’t drink. She came and went about four times. I was demented. Jonny googled if my meds could have caused it and apparently they could. So we told the nurse when she came back and she was like ohhhhhh yes. Like duh! You should have known that anyway. Your the doctor. Not us. So as time was getting on I said to her look I need to go but I promise I’ll come back if I get any worse cause I wasn’t missing the airs how for no one! She discharged me on the condition that I did some back if I got any worse. I was like look, I’m not stupid! I’ll come back if I get any worse. So I got my discharge papers and off I toddled. My nana and jonny were with me that day because my mam was away and some motorbike thing. She always goes to them. I asked my nana to give us a lift to sunderland so we could get on the bus to the airs how from there. Because I came well prepared we had all our stuff with us anyway so we didn’t need to. Go back home or anything we could just go straight there. We got there eventually, me high on tramadol and still in agony but I lasted the day just with minimal fun. Like I didn’t go on any rides just literally sat and watched the planes. I couldn’t even enjoy any food as every time I ate it killed me. Anyway I’ll cut to the chase cause I’m babbling a bit. Told you I babble. I ended up going back to the hospital either the same day or the day after I can’t quite remember whenever it was though I got admitted. I didn’t know how long I was going to be in for. I was gutted. I hated hospitals and just wanted my mam and jonny there all the time. The ward I was on was actually really good and let my mam come early on the morning and stay all day with me. So that wasn’t so bad. What was bad was how constipated I was it was horrible! That was when I experienced my first enema. Vile things they are but it helped. I was in hospital for three days and was told to stop taking the aza. My Crohn’s subsided for a bit then for a good few months. Three weeks of the meds and pancreatitis was well worth it. I’m gunna do this blog in two parts. As there’s so much to write. This is the end of part one. I’ll write the rest soon. THAnks for reading xxxx