Tag: crohnsdisease

Crohns update – 9 months Post-Op

Processed with VSCO with c7 presetYou’ll have to excuse the completely unrelated photo, inbetween looking like a homeless woman and having the baby kicking around like they are stuck in some sort of prison, I didn’t manage to get a good photo showcasing my 9 months post op stomach.

I don’t quite know where to start, because the outcome is fairly obvious – I’m pregnant, therefore the surgery was a great success.

Processed with VSCO with c8 presetThe intial first weeks following surgery, as you know, were extremely difficult. I was unable to walk properly for at least a month and was relying on people to take care of me. I lived in my pjs (so nothing has changed really) and just kept hoping that each day id wake up and be able to do a little bit more.

A lot of people have wondered the most obvious question, what was your first shit like after surgery? I’m not gonna sugar coat it, it was how I imagine child birth will be like and I still have Vietnam flashbacks of the trauma. But despite the gas masks needed and watching the cleaners go in like the monsters in monsters inc when they bring back a childs item and have to be quarantined, things only got better.

6 weeks after surgery me and john travelled to crete. I was extremely nervous flying because all previous flights have been a nightmare fuelled with anxiety and holding in a fart that may or may not be a shit alongside my vomiting. But both flights there and back were relaxing and amazingly non eventful, there was no sickness and no anxiety in spite of the fact I thought I was gonna have a blood clot and die before I made it to sunny Greece (6 weeks is the minimum you are able to travel after major surgery *unless it is avoidable* because of risks of blood clots due to the pressure).

September came around and from what I can recall I don’t think I even thought about my surgery or my crohns. I was still struggling after a large meal however, needing to rush for diarrhoea exactly 30 minutes from ingestion (like clockwork) and had a mediocre pain. But instead of an on going flare up, it would be 5 minutes of intense flaring and then gone for the rest of the day/night. I got back into a normal routine, and Processed with VSCO with c7 presetwe were now officially settled into our new home to start the rest of our lives.

With the positive changes of my body, being able to get through days/weeks/months without vomiting and being able to eat without any consequences, my anxiety had completely disappeared and my mind was so positive, enjoying every minute of health. A lot of changes were made because of how one surgery gave me the opportunity to live a life without crippling fatigue, daily naps and morning sickness.

Nights were fuelled with alcohol, good food and the friends that have stuck by me throughout all my life changes. It’s a difficult thing going from an ‘ill person’ to a ‘healthy person’ because its not just your body that changes, your mind and your outlook changes aswell. What I’ve found has come from that, is friends that were there when you were ill seem to be non existent now you have a life of your own, now you are independent and are able to look back at your choices and decisions and see what is really the right thing for you to do in life, seem to put out others.

A little like Munchausen syndrome, you come to realise that without even knowing it people around you influence your illness in multiple ways and only when you escape the cloud of ‘being ill’ or being the friend ‘with a disease’ you find the friends that are willing to carry you on in your ‘new life.’ Some people won’t understand the changes you make in your life and why you make them, they don’t understand how something that seemed so comfortable and secure, something that seemed like a great environment and relationship can suddenly…not be.

They’ve known you having fun in a world where you are ill, where your life is built around being ill and the consequences that that illness carries. When you suddenly become healthy and your mindset is completely different you start to completely change, you change the way you enjoy your life, because it’s suddenly so healthy, long and Processed with VSCO with c9 presetfulfilled and things that once made you happy when life didn’t seem so full, now become burdens, they are reminders of your ‘old life.’ The things that once seemed good for you, in hindsight, only unknowingly influenced your illness. Whether that be mental or physical.

That is the part of following the light at the end of the tunnel that you don’t know. You’ve always seen the light at the end of the tunnel, but what about when you get there and you are ‘on the other side?’ It really is a whole new world, a whole new you.

New body.

New mind.

New outlook.

New values.

New opinions.

The hard part is accepting some people and some things aren’t meant to be in your new life, not out of anger, hatred, spite or anything negative but purely because they don’t understand the complete transformation your life has taken. The same as you find new things, make new friendships and find completely new joys in life.

November comes around and surgery legit is a distant memory, I have no symptoms of my Crohns and I have no reason to even think about it. I’m enjoying everything.

However, towards the end of November I began to get very ill, I was being sick every morning again and was tired 24/7. My health was short lived, I thought. Untill I decided id tempt fate and piss on a little stick, yknow for the fun of it. Three tests later, three positives later and 6 lines later, it wasn’t my Crohns returning with a vengeance, it was a new living being sucking the life out of me.

I had surgery to give my body the chance to carry a child, with a limited time for fertility Processed with VSCO with c8 presetit was dire to go ahead with having my bowel resection if I was going to be able to get past that dreaded first trimester. The doctors had determined my Crohns was the reason for my miscarriages and so when the first trimester came and went, that was the ultimate acknowledgment that told me everything I have endured, was worth it, it worked.

Surgery was the best decision I have ever made.

Anyone who thinks surgery is a scary thing, is the last resort and the worst outcome possible, it was the BEST decision I ever made. (Although perhaps second to dumping some ugly drug addict when I was 19, haha)

I am now 22 weeks pregnant, entering my third trimester and I was warned my crohns will most likely make an appearance, and it has. From 18 weeks till now my crohns has reared its ugly head, but unlike anything pre-surgery it is manageable and non-threatening. The flares come and go, and although I have a few accidents here and there it is nothing compared to pre-surgery days.

Crohns is incurable, it will always be in my body, inbedded in my DNA and therefore it is expected to have some good and some bad days. It is expected to have flare ups and suffer still even though the severely diseased bowel has gone. But for now, I am having a baby and that is all I want. I may be ill again once she is born, but that’s okay because she’s here and my body allowed me to grow her.

Life is great, my health is great (most of the time) and for 9 months post op, I’d say there’s nothing I could possibly say, nothing that could possibly happen, that would make me think that having surgery was a bad decision. (Even though I went bat shit crazy during).

 

xoxo

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Introducing…Trust Your Gut


My name is Billie Anderson, I’m 21 and I’m a history student down on the sunny English coast! If we are talking hobbies in conjunction with student life, it mainly surrounds how much alcohol you can consume without hospitalising yourself. And also knowing where the cheapest pizza is to soak up all that booze!
The other things I enjoy in life (along with wine and pizza) aren’t exactly mainstream: I owned two very naughty ponies who loved to see how quickly they could throw me into the mud! As a kid I’d spend my pocket money on a new bridle or rugs for the horses rather than makeup and clothes like my friends!
I’m also an avid petrol head – an interest that was spurred by my grandad when he took me for a drive in his classic Porsche 924 when I was 7. I almost drowned when the passenger-side foot well flooded with water! There is so much character to a classic car – the smell of pure petrol mixed with 50-year-old cigarette smoke that is ingrained into the upholstery of a 1971 mk1 Ford Capri is so much more exciting than a Prius! Ive always preferred scrolling through classic car magazines looking at engines and the restoration of some beaten up old Beetle, than the ‘top ten reasons why your crush is ignoring you’ section of Hello!
Im also a super nerd! With the end of university growing ever closer, it’s a time that every student dreads… Dissertations! Along with my not-so-conventional hobbies, the area of study I specialise in is the history of piracy. So it’s 10,000 words about the life of Jack Sparrow and ‘research’ includes watching my way through every single Pirates of The Caribbean film! Not a bad way to spend the year if you ask me!
Now I’ve tried to make myself sound slightly interesting, onto the blog I run! Around 9 months ago I created Trust Your Gut. I started this project after being diagnosed with Ulcerative Colitis – one of the ugly sisters of IBD (Inflammatory Bowel Disease) – the other being Crohn’s disease. I decided to write about my illness due to how isolating it can be; I felt so alone in my fight against Colitis, not knowing anyone who had experienced it, and I didn’t want anyone to go through the same thing I did.
I found myself spending more time in hospital, talking to doctors, rather than going to uni and partying with my mates, so Trust Your Gut became a place where I felt other people could get a more human response to the illness rather than just the clinical talk you get from doctors and nurses.
As my illness progressed however, it became clear that my UC was very serious and the drug therapy I was placed on wasn’t making me any better. So in January 2018, one year after my diagnosis, I underwent major abdominal surgery to remove my very angry, ulcerated colon and given an ileostomy (so I haven’t got a large intestine and my small intestine pokes about an inch out of my stomach into a bag). Due to my surgery, Trust Your Gut went from being all about my life with a chronic illness and spreading awareness for IBD, to stoma awareness.
It is now all about how my little stoma bag saved my life!
From my point of view there isn’t enough awareness about IBD or stomas – particularly for younger people – and I hope that Trust Your Gut can be a platform to spread the word! This is a blog that has been a little refuge for me and hopefully other people (those who are diagnosed, have a connection to the disease through someone else or even those who just want to find out more) in raising awareness for an illness that isn’t talked about enough!
Along the way I’ve been inspired by so many other bloggers, vloggers and Instagrammers who all do so much to raise awareness for IBD and stoma life. The little Instagram family that I’ve built up over the last few months has been a lifeline of support and love in the fight against such a difficult disease!
Trust Your Gut has been something that I’ve found I truly love – a little project that hopefully helps raise awareness for those who don’t know about IBD and also a place where those who do know about it can find some comfort in knowing they aren’t going it alone! I love divulging all my secrets and probably boring the pants off everyone on there! In amongst the non-conventional hobbies I have, I now have a very non-conventional blog to go with a non-conventional stomach, all in the hope of spreading a little love!
You can find out all my secrets about bag-life here (https://trustyourgut.blog) and on Instagram too (@billieandersonx)!
Here’s to making the very non-conventional stomach I have conventional!

Billie’s Instagram:

Billie’s Blog:

billie 6

*Written by Billie Anderson, Trust Your Gut | Edited by Dawsonxo | Photo credit by Billie Anderson, Trust your Gut | Subject to Copyright*

3 Weeks Post op & PTSD

*Disclaimer – There are post-surgery images that may offend some people. 

It took a lot of effort to bother turning on the computer today and to be honest my main reason was because my phone ran out of battery mid conspiracy theory video and I needed to know whether Justin Bieber really is a lizard ruling the world……

Anyway, I’ve had three weeks off and exhausted all of Taylor Swift’s old school albums since she finally just joined Spotify again whilst feeling sorry for myself, so figured this post was long overdue. I’m doing IMG_20170711_104944_790okay, there isn’t really a word better than ‘okay’ to describe it. I am in pain and discomfort but it’s not horrific anymore, it’s more a nagging pain in my right side and bruised ribs. My pelvis is very bruised where the surgeon had his hands inside and moved a lot around and that is probably the worst pain, it stops me from walking, moving around and going to the toilet at all. But again, it’s getting better each day and every day I’m able to walk a little further and stand a bit straighter.

So now you all know I’m alive and doing better I’ll explain the traumatic experience that was my surgery. The surgery itself was fine, I got into my paper pants and sexy green stockings and whilst putting in my cannula and other bits and pieces I was chatting away with the anaesthetist about how I’ve watched the film “Awake” too many times and I’m petrified of waking up mid surgery. That was the last thing I remember.

I woke up in another room and literally the moment I gasped in air the most horrific pain hit me across my chest and my stomach, I began screaming and crying and was basically inconsolable. I had had an epidural put through my spine and the anaesthetist came back to check it was working as I wasn’t supposed to be in pain. Now imma cut a long story short but basically what had happened is an epidural (commonly used for giving birth) is supposed to numb the lower part of your body so you can’t feel anything. It is a needle that is put through your spine and a single mm out can cause issues. What had happened was the epidural was instead numbing up my body, meaning as time went on my chest was becoming numb, my lungs and my throat were becoming numb and so I couldn’t physically breathe. Meanwhile my stomach, incision and all the lower parts of my body were killing still and I could feel everything. I would describe it as suffocating whilst someone is ripping tendons, veins, intestines, anything attached out of your stomach. I think I broke the nurses hand because I was like a creepy psycho grabbing her like “DON’T LEAVE ME!” I’ve never seen such terror in her eyes.

2017-07-12 04.26.31 1As time had passed they turned off the epidural but left it attached in my back and put me on a morphine pump along with random other things by drip but I didn’t really care at this point. Around 6 hours had past and my mom and john got to come and see me so I naturally felt a little more relaxed. But Day two, when my family came to visit I vaguely remember, everything was spinning and colourful and I was drifting in and out of consciousness. Things were happening around me that weren’t actually happening and I was sort of in a dream state back at home, I was post op and everything was just normal. Someone was holding my hand tightly and then I don’t really know how to explain it, but you know in a film if someone is having a vision or a hallucination and then someone wakes them from it, it’s kind of like a whirlwind multicoloured tunnel dragging them back into reality like really dramatically? Well basically that happened, it felt how I imagine someone feels when their lungs stop working and they use those defibrillator things to jolt them back to life (very scientific I know, haha). Suddenly I was again in this excruciating pain and there was loads of people around me, they were calling my name and shaking my head and I didn’t recognise a single one of them. I felt panicked and was quite literally terrified, I started crying and screaming. John was holding my hand trying to calm me but I didn’t recognise him at all, I didn’t recognise my mom or my dad, all these people were just talking but I was so scared I couldn’t speak. After a few minutes I began to recognise them but I was thinking how did I get back into the hospital? Then realised I was still in a dream. Now I’ve watched inception countless times and lucid dreaming isn’t something I’m not familiar with in real life anyway, so I was like right I’ve got to wake up. The only way to wake up is to die in my head at this point, so I was thinking I can’t kill myself because all these people are holding me so how am I going to wake up? I was crying and panicking and kept saying to people that I’m in a dream and I need to wake up, can you help me wake up. I was looking at my hands and my body and it wasn’t real, it wasn’t really there, things were changing around me which solidified the idea I was in a dream even though everyone kept telling me I wasn’t. I just thought2017-06-23 03.32.56 1 they were tricking me. But after about half an hour of being in pain and conscious I realised that this was actually reality, I mean I still believe I was in a dream but I accepted that it wasn’t. What had basically happened was I had been administered too much morphine and had overdosed. I was not breathing normally and was unresponsive so they gave me an injection that reverses morphine’s effects and jolts you back into consciousness. Literally. So I was having a really fucking bad trip. But thankfully after that things began to go smoother.

It had been a week and not much was happening, I lost days and can’t remember much. There were moments of excruciating pain and then pain free moments, over time I had my catheter removed and started having physiotherapy to get me out of bed. Things were not the greatest but not as bad as they had been. The day staff were lovely and comforting, trying to get me to eat by offering me anything I wanted and spending free time talking to me so I didn’t feel anxious or lonely when I didn’t have visitors. I was high on pretty much anything I could be prescribed for the week but things were improving.

Until day 9 when I woke up and I could hear someone talking, I hadn’t slept properly in 8 days and the voice was really loud, I responded but nothing. It didn’t take me long to realise that the voice wasn’t really there. I started seeing dark shadows moving across the room and having this overwhelming screaming inside my head that kept telling me to run out of the hospital. Again, to cut a long story short my mental health was not in a good place, but I recognised this and talked (more like hiccupped between sobs) to the nurse and asked to see a mental health doctor because something wasn’t right. They decided to take me off the morphine machine as it was giving me these hallucinations and said I was suffering from post-traumatic stress disorder from my surgery and the first few days in the hospital.  

On day 10 I told myself I will get out of bed, get showered and dressed and smile like a creepy Cheshire cat, move around so it looks like I’ve miraculously been healed by an unknown force and convince my surgeon/doctor that I was ready to go home. Well, it worked nonetheless, I felt the last part of recovery was better for me at home and I felt that staying was only making me worse. I felt like I was being held there against my will and just needed to get out anyway possible.

We finally got home at 5:30pm after waiting a ridiculous amount of time for someone to give me a bloody pack of AirBrush_20170709133721tramadol and after proper milking it me and john got to stay the week in the bedroom with the on suite. Untill now when I’ve been evicted back into the conservatory living the life of dog hairs, suffocating heat and day light at midnight.

The past few weeks have been very tough, both physically and mentally, I want to be able to get up and do something, I want to start feeling better and having fun and feeling happy again but in time life will get back to normal and I’ll have a bad ass scar to show off when I’m drunk and living life like a normal person not being worried about having a flare up.

I apologise that this has been quite a depressing post, I skipped through it fairly quickly considering I was in there for 10 days but it was already depressing enough so didn’t think I’d give you every gory detail, like when my first bowel movement was and what a traumatic experience that was alone! (Genuinely felt sorry for the next person using the toilet, I probably killed off some old woman). Each day I’m getting better and I have loads of exciting things to look forward to that I’ll be able to share with all of you!

Also thank you to every one of you that has messaged, I haven’t even managed to reply to some of you but I will get round to it I promise! Thank you to everyone that came and IMG_20170704_113127_617visited and thank you to everyone who has sent me gifts! Thank you to all of the staff that looked after me even when I was losing my marbles. Thank you to my family for looking after me each and every day, even when I milk it to get an extra cup of tea or bar of chocolate and especially shout out to Alex that for the first time in her entire life has got up and made me some food. I feel like Zante has really taught her some life lessons, haha. Most importantly thank you to Dr Fallis, my surgeon who has given me the chance at a whole new, happy life! (I feel like I’m writing a fucking acceptance speech for a Grammy award or something, sorry for my cringe).

My next post will be more happy and upbeat, but at the minute posts will be a little inconsistent as I’m still in and out of getting high on tramadol and binging on Netflix.

xoxo

My Upcoming Surgery

I’ve been inundated with messages from people asking about my surgery which is so lovely so I’m going to do a little explanation of what this entails.

Basically, after years and years of tablets, infusions, injections, steroids, enemas, suppositories (you name anything for your bottom end and I’ve had it) and not to mention countless doctors, I am going down the surgical route. This means that either by keyhole or literally a slit straight down the stomach –colon I wont find out until on the table (well, me personally will find out when im awake obvs otherwise that would be terrifying) – and will be taking out 20cm of intestine, part of my colon, parts of other random bits and pieces that are too damaged and a hell of a lot of scar tissue.

The small bowel (or small intestine) is where my Crohns is most active, it is commonly used for the breaking down and absorption of nutrients but because of my Crohns, this is severely damaged and not a lot is really happening in there and so it clogs up, gets damaged and creates other ways to breakdown everything – I think, its hard to follow because each doctor says a different thing.

I have multiple fistulas in my small bowel also, which are kind of like little alleyways. The intestine coils fistularound like a weird fat worm but when a fistula is formed instead of finding its way around the intestine normally, flowing around the corners, it creates holes in the intestines walls and makes a short-cut to pass through.

The bowel resection I will be having is the removal of the diseased intestines and colon and then if there is enough healthy intestine that has not been attacked by my Crohns yet, the ends of all the little bits will be stitched or stapled back together. This is most likely what I will be having this time round. I say this time as it is unlikely I will not need further surgery because Crohns disease is a life long disease and cannot be treated, no matter how much of the disease you can surgically take out the disease will still be there lurking to take another bit later on.

However, when you do not have any healthy gut left, this is when the surgeon will create an opening called a stoma which is a hole through the skin of your stomach. The small intestine is then attached to the outer wall of your stomach (the stoma) and a bag is fitted so that any stool will pass into the bag, known as an ileostomy. This can be permanent or semi-permanent. Yes, that does literally mean that instead of winding down your intestine and lying in your stomach to be passed out of your arsehole it will come out of your intestine directly – no bumhole is damaged in this process.

So yes, that’s basically a simplified explanation of what I’m having. I’m thankful enough that I have my partner john who suffers with the other form of IBD, colitis, and he himself has had numerous surgeries. Although they did it in Spain and his interpreter was in the bed next to him with pneumonia so he couldn’t understand a word of what was happening, to which I’m fairly confident they stole his kidneys or intestines and sold them on the black market. So he understands and supports me through the process and we can both have mashed up looking stomachs together (as I know a lot of you with Crohns are worried about how your body will look post-surgery). He will argue with me till he’s blue in the face that he has a belly button but I can tell you he does not and his favourite thing to do when he’s had a drink is get his scars out and tell people he was attacked by a shark.

Also people have asked me why I have decided to do this now, to which the answer is, as I have been trying to have children for the past year or so, I have been unsuccessful and have miscarried twice. I have since found out that my Crohns has been too active and caused too much damage that my body was unable to keep the baby alive and growing normally. So after this surgery, not only will I be a hell of a lot better with my health but I may be able to carry children and have a normal pregnancy as well, which is my goal for the future.

Feel free to get in touch if you want to know more on the surgery or if you’re having it yourself and need some support.

*Diagrams from other sources

before

Repairing

Ok, it was pretty predictable that I was never going to be able to keep up the posts like I said I was, I knew it and you all knew it, I’m just a lazy shit, that’s nothing new. BUT I am going to try to repair this broken thread and attempt to start again, this time in a whole new, different portion of my life.

An alarming and quite overwhelming amount of people have messaged me in the past few months asking when my next post would be and when it would be up and running again. I was quite taken back by the response I got by my previous posts and didn’t realise half of you, like me are a backseat reader, lurking on the post but fully incognito and it wasn’t until you either told me to my face (little scary but appreciated) or messaged me on Instagram that I realised quite how many of you missed it, so I feel quite blessed for that. Also shout out to my mom and all her friends who seem to be my number one fans at the minute, you’re all babes. Feel like I have quite the rally and popularity at yet another doctor’s surgery, this time for nicer reasons.

Anyway, in the last few weeks I have failed at doing this blogging thing but I promise it was with good reason and not just because I decided to binge watch every single season of Game of Thrones and then become so obsessed I needed to read the books…but yeah that’s exactly what I did…

I have decided to try to continue blogging because as a lot of you know I will be admitted into hospital in the next two weeks to have life changing surgery and so I will quite physically be out of action for a long period of time, which gives me a better chance at unleashing my cabin fever on this page. (Hopefully, although I can’t guarantee because the stingy bastards at the hospital charge a fortune for wifi, I could start a fundraising page just to sponsor me getting wifi for the few weeks..? haha).

And secondly because after a very long, very stressful time living in a conservatory me and John will be getting the keys to the house we have finally bought (Unless forces beyond our control fuck us in the ass, but we are quite far along in the process that -touchwood- we are past that). And so will be leaving my hometown for my very own first house and saying goodbye to rentals. Hopefully I will be sharing the progress on the house on the blog as we go along, unless it looks bloody awful and then I obviously wont. Or I get too side tracked with mamasinteriorscrapbook stories, which are quite literally hilarious and is a nicer house for me to dream about than the building site we will be in for a while – (Seriously her hallway tiles are like ultimate tile porn). So hopefully our first home journey will be on here as well.

Thankfully enough I do already have a few posts lined up and scheduled to go live so at least I wont be lying for like, one week?

That’s about as much as I’m going to go into because my fingers are freezing and I’ve got copious amounts of chocolate and Vodka to fit in before it’s hospital time.

 

xxx