H-envy.

 Envy - gross right? 

Health envy - or as I've cleverly named it "h-envy", my god it's heavy to carry!

I think we can all admit we’ve felt some form of envy in our life time.

Underneath the feeling of envy is a desire, a want, a wish I guess? For something to be different or to change. However, this becomes even more difficult when you aren’t in control of that change and you know it won't happen.

I’ve progressively become more aware of my “health envy”, I’m envious of my friends, my family, colleagues, whoever it may be. The fact they are able to do things that I physically cannot.

I will often have times where I just break-down about things I am unable to do, most recently about my job. I love my job, however, sometimes it’s a constant battle to stay focused. I become envious of my colleagues that can just “keep going”, the fact they can sit in meetings for hours without worrying where the toilet is, or how “embarrassing” it is to have your stomach making such loud noises that inevitably people comment on it. Not having to over think about “what if I suddenly need to get up and leave in front of loads of people”, can I get out of the room quick enough, can I get out without people realising why I’m leaving?

Even down to remembering things, my job is very fast paced and whilst it isn’t physically challenging it can take its toll emotionally. I find by the end of the day I can only describe it as “I have so many tabs open in my brain” that I am sometimes unable to recall and process what has happened since the day started. I'm envious of those that bounce back, that are full of energy (or may just appear to be!). I’m fully aware that I over think and criticise myself, I guess this is me expressing my frustrations, although I am realistic these symptoms are out of my control.

I’m envious over my friends and family for the most basic of things. Coming home from work and rushing to the toilet as “they’ve been holding it all day” and are “too embarrassed to go at work”. I’d LOVE that “luxury” of being able to wait all day.

Being able to sleep through the night and not get up several times. Being able to eat what they want, when they want, where they want. To not have to book / attend so many doctors or hospital appointments.

To not have to rely on Imodium and Buscopan to get them through a social event. For having enough energy to do basic things, like exercise without worry! Admittedly, I do have an unhealthy relationship with exercise however, some of this is due to movement making my bowel more active. This definitely has caused issues and embarrassment in the past and I now struggle to look past this. 

I know all these thoughts have nothing to do with the individuals, they represent my feelings and my “wants”. If someone is envious of a new pair of shoes or a new car for example, they are, to a certain extent in control of whether they can have one of their own. With health envy comes an increased personal frustration, that feeling of helplessness and total lack of control.

I’ve read something previously referring to living with a chronic illness as a “grieving process” and it really is so true. You are grieving for the past version of yourself, who you were prior to your diagnosis. Whilst time passes it may get “easier”, you adapt and develop skills that enable you to cope, you also discover new limitations and so, the grieving process starts again.

It’s not easy to see people living a lifestyle that you wish you could live, and nor is it easy to talk about feeling envious naturally, it is far from a nice feeling. 

I wanted to write this post as I know I won’t be the only person feeling the same, for those people that can relate to wishing for the freedom we imagine being “healthy” would give us, the freedom from pain and uncertainty.

I think it’s important to validate our feelings and whilst I always recognise I’m in a very fortunate position to a lot of people, that does not take value away from how I feel. 

I will always stand by the saying “health is wealth” treasure it. X

Let’s Talk - Life Update

This is me last Sunday - celebrating one of my longest friends baby showers. 💚

Fast forward a week - I am laid in the same position, in the same 4 walls, same hospital bed having several emotional outbursts, I was majorly struggling with any positivity yesterday and found myself feeling uncontrollably emotional. 

The reality of how fast and hard a chronic illness can hit. Since testing positive for covid last week I’ve been extremely unwell not only with covid symptoms but as a result of covid I’ve contracted a bug which has made my Ulcerative Colitis flare up. 

I couldn’t eat or retain water for 3 days and became extremely dehydrated. I’ve since been hospitalised and I am now on courses of IV fluids and high dose intravenous steroids to reduce the inflammation whilst they investigate what the infection is and the treatment that is required. 

I usually really try my hardest to keep myself upbeat, try to recognise the small positives in each day and any situation but yesterday I was having a ‘why me’ day AND as I always say - those are ok, we are allowed those days. 

I couldn’t stop thinking ‘this is my life’ I’m constantly going to be in this cycle of - when will my next flare up be? Could that cause me to flare? - I never imagined covid to have this effect on my condition but it was so easily done. 

It’s hard to explain to people that having an immune system that simply does not do its job is as basic as it gets. Immune systems are there to protect us, help us fight away infections, bacteria etc. Mine does not do that, instead mine attacks my own body putting me at greater risk of contracting any illness.  

I’ve not had the best 3 days experience in the hospital starting with a 9 hour wait for a bed, majority of staff being unhelpful, rude and the communication has been non existent. All of which definitely does not help when you’re feeling so low in yourself. 

Receiving the right treatment is great and obviously necessary but it does not mean all the problems are solved. I swore I’d never go back on steroids but now found myself in a position where I’ve had no choice and again that’s a hard ‘pill to swallow’ (pardon the pun) as ultimately its my own body giving up on me. 

Steroids are immunosuppressants which in turn causes my immune system to weaken even further and therefore - at even greater risk, such a catch 22 situation. 

I have also ALWAYS had horrendous side effects with steroids and relate these drugs to the lowest points in my IBD journey, physically and mentally, which if I’m honest I can’t bare the thought of again. 

HOWEVER, let’s end this on a standard positive note as I’m really trying today. 

I woke up today feeling slightly more positive, I’m seeing some relief in symptoms and I also had two very helpful members of staff today. I had an urge to write today as I always find it such a release and that is exactly what I needed. 

I know I’ll be ok, I always am. 

However, I also know that in order to get to that place I need to allow myself to feel all the emotions; to cry when I need to, to feel sorry for myself and ultimately encourage myself to continue to celebrate the ‘small wins’.

Then I will get a grip and fast forward my clock to this time in 6 weeks when I might be a big steroid MOON face rolling round Vegas, but I’ll be there, living my best life with my favourite, most supportive humans and that is ultimately what life is really all about ❤️🥰 

What you see VS what you don’t.

What you see VS what you don’t. 

Now VS 2015 

‘Good’ VS Bad 

I was scrolling through my phone pictures the other day and right at the very top was pictures from 2015 when I took my Nan to Egypt for the week. This was also the year I got my first full time job and the year that I graduated and whilst these all sound like great memories it really is a year that doesn’t resonate well with me. I’d say for me mentally this was my lowest year, as mentioned in a previous blog I was hospitalised shortly after handing my dissertation in at uni as I was in a very bad flare up. This resulted in various drugs but the main one being prednisolone aka steroids aka the DEVILS tic tac. 

I actually NEVER thought I’d share these photos as quite frankly I cannot associate the girl in them as being me, I was so far from myself it’s painful to look back on. 

The truth is, IBD is much more than the odd stomach ache and rushing to the toilet. It’s NOT IBS, it’s not cured by trying to be mindful, doing yoga or eating ‘healthy’. 

It’s - excruciating abdominal cramps, joint pain, muscle pain, exhaustion, nausea, vomiting, diarrhoea, rectal bleeding, loss in appetite, weight loss/gain, fever, fatigue, brain fog, tooth loss, malnutrition & malabsorption, hair loss, fistulas, strictures and abscesses, intestinal blockages, perforated bowel, sepsis, surgical complications, and increased risk of colon cancer. 

Patients with IBD often depend on medications to help control the symptoms and pain caused by their disease. Medications commonly used to treat IBD include antibiotics, steroids and immunosuppressants that may bring remission, but no guarantees. 

These medications can sometimes cause unwanted side effects which are often harder to manage than the disease itself. As you can see from my photos this is probably the only time in the past 10 years that my illness has been ‘visible’ through the uncontrollable weight gain caused by the steroids and the notorious ‘moon face’ 🌝 pred was something which my body NEEDED to recover but bought a wholeeeee load of side effects with taking them. 

The main point of sharing this post is to reinforce the message ‘everyone you meet is facing a silent battle’. Something which we can easily forget.

I still experience many side effects from my current treatment and over time they become ‘normal’ however I do think it’s important to reflect on what we as IBD patients contend with on a daily basis and just how resilient we are when it comes to our daily challenges. 

It’s okay to give yourself a bit of recognition and praise, everyone is fighting their own battle but no one else is fighting yours! 

It’s Crohns and Colitis Awareness week and this is my story. 💪🏼💜

What you don’t see… 

What you do see… 

 

The Dreaded 'S' Word...

In fact the TWO dreaded S words. 

Surgery and Stoma. Two words which I've avoided for 9 years.. until now. I mean, I've had discussions and was fully aware this time may come, however I never allowed myself to process or accept the fact it would happen to me. 

During lockdown I had an awful flare up and was referred for an urgent Colonoscopy, if you've ever had one of these you'll know the 'joys'. Anyway, I never have sedation anymore, I have this weird thing of wanting to be fully alert to see what's happening on the screen, it's my way of seeing it for myself rather than waiting for the doctors follow up letter. This time was totally unbearable and the first time I've ever had to ask them to stop due to pain. I quickly realised that it wasn't good news at all and I was able to see for myself how inflamed my bowels were since my last Colonoscopy in 2019. Naturally, I knew what the next discussion would be and what decisions i'd have to face.. so i was very emotional. Unfortunately the nurse I had looking after me must have missed her training on how to be compassionate and empathetic towards patients as I was greeted with 'Don't get upset, you know, it could be much worse.. like if we told you you'd got Cancer'. Wow, of course I'm fully aware I could be less fortunate and there are much worse illnesses out there then mine, does that mean I can't be upset or feel a bit shit about things from time to time?! 

It's coming up to 10 years since I was diagnosed.. a whole bloody decade! I've tried treatment after treatment and some of which my body responded positively too for a short period of time. I've now been told my Colitis is 'Medically Refractory' which means my body isn't responding to the treatment despite being on the right sort of drugs which should send me into remission. This is where I'm at now,  I've been told my only route is surgical.. meaning I'd have to have Stoma surgery. It's still my biggest struggle to discuss and comprehend life with a Stoma bag, but there has been days most recently where I've thought how much 'easier' and pain free my life would be. For those who don't know this basically means i'll have my entire colon removed and the end of my small intestine will come through my abdomen which is what the Stoma bag will be fitted to. When I really let myself think about it, it's actually crazy how our bodies can function without such a big organ and that I can casually just have a small part of my insides hanging out! 1 in 4 patients with UC require this surgery.. lucky me! 

Over the past month I've met with my nurse specialist, a Stoma nurse and a surgeon to discuss the surgery. This wouldn't have ever happened years ago, I wouldn't ever allow myself to have these discussions and would totally block the idea from my mind.. so in a way I'm proud of myself for just taking this step. The discussion with my nurse specialist was one that we both knew was coming and one that we both know I have tried to avoid at all costs.. she told me I'm so used to 'putting up with symptoms' that I think my way of life and the pain I experience is the norm. 

The Stoma nurse gave me a variety of different bags to 'try' along with various information to take home and read. It really is amazing how much information and support there is for Stoma patients now and the ever advancing products to make life as easy as possible. She stuck a bag on my stomach where it would be situated after the surgery.. I didn't however have any adhesive spray to remove it.. so I had no choice to keep it on all day. Again this is a major step for me and something I'd never even consider before. It came with a mixture of emotions, I had to stop and do a food shop on the way home from the hospital and I was so conscious people could see it through my clothes, it was also a major reality check that this could actually become a permanent fixture.

Speaking to various professionals does help put everything into perspective and they obviously have the patients best interests in mind, however it's a life changing decision that effects no one else but me. I was given a few extra drugs to trial, although afterwards the surgeon basically told me that I was on the highest dose of medical treatment and if I was to try anything else it would be like 'being in constant chronic pain and being on the highest dose of opium then hoping paracetamol would work'. 

I was given a date for surgery at the beginning of September, i've decided not to go ahead.. for now. I know deep down i'm delaying the inevitable but I need to be 100% sure in my own mind that i've tried everything else possible. I'm in no way shape or form scared of surgery or being in pain.. it's not like my colon is doing me any favours at the moment, it might aswell not be there! 😰 what I am afraid of is the emotional implications of this surgery, our mind can be an awful place and my emotions have already been all over the place since being told I need a Stoma bag, how do you even prepare for life changing surgery?! 

The next time I'll be listed for surgery will be around March-April 2021. (unless, it becomes an emergency.. touch wood it doesn't!) I'm going to use these months to try everything I can and put my mind at ease that this is the right step. Part of me is convinced I'm in a bad flare up because of lockdown and all the stresses that came with it (IBD is strongly connected to stress and can cause bad flareups). I'd be absolutely gutted if I had this procedure earlier than I really needed to when my flare up could potentially calm down now that the world is slowly going back to 'normal'. Although I may be clutching at straws, ultimately it is my body and the final decision is mine. 

For now i'm researching more, i've found some truly inspirational accounts online and people who have had Stoma surgery and say they would never look back; no more pain, no more drugs with horrendous side effects, no more panicking about finding a toilet urgently. 

I guess its another mind over matter scenario, as society tells us its 'abnormal' and 'weird' to have these things, there is a huge stigma that comes with a Stoma. Although, I may be left with no other choice.. If someone told me the ins and outs of living with a chronic illness before I was diagnosed I'd probably say the same thing that I don't want to or can't live a life like that. We learn to adapt and well, life goes on! 

This was a difficult post to write and I'm still so scared of what I've got to face but I'm very lucky and grateful that I've got an amazing support network of family and some of my closest friends that make this journey all the more bearable! 💖xx

Damaged Goods..

There's certain aspects of living with a Chronic Illness which I don't often discuss. Relationships are one of those things. When you're told you have an condition which is going to be with you for life, you have no choice but to learn to live with that condition. It becomes a part of your everyday life and really a part of who you are. The part I struggle with is letting other people see this part of me.

I'm lucky when it comes to friendships I have some amazingly supportive friends, some of which fully understand and have seen the extent of what I go through. There's some of my friends I won't discuss much with and that's ok.. they're still my friends they just aren't the ones I'm most comfortable opening up too, I'll tell them what they need to know then I'll hide the rest (as much as I can). I think it's difficult for anyone to comprehend what you're experiencing when they don't have to feel it themselves, as with any invisible illness or a mental health related illness they aren't visible so can be easily over looked and forgotten about.

Anyone that knows me knows I've never really been a 'relationship' girl.. you know them girls that can't be by themselves they feel like, they have to be with someone.. anyone. Yeah that isn't me.
I remember my mum once telling me her and my grandma were discussing if I actually even like men at all.. Lol. 

I moved out when I was 18 and went to uni.. I lived with girls for 5 years and since then I've lived alone for the past 3 years, it's easy to get used to your own company and your own routine. It's amazing that, I know I can go to the bathroom in the middle of the night and guarantee the seat will be down!

I think along with the above since my diagnosis relationships just haven't been a priority of mine and I've never really discussed with anyone how having an illness like this does have an impact on how you feel towards others. Crohns Disease and Ulcerative Colitis are not the most glamorous conditions to discuss and there really is no way to sugar coat the symptoms at all, there's a lot of toilet talk and conversations which are simply just 'awkward' for everyone involved. I often think if I can't even fully open up about my own condition how do I expect someone else to be able to understand/offer support?
When is it a good time to tell someone you're talking to or dating that you've got IBD - I mean no one really knows what it is anyway!

I've had a few experiences in the past of comments like 'Oh you've got a disease haven't you', 'Why are you always so tired', 'you're not sleeping again are you', 'are you going to the toilet again you've just been?!' These are the sort of comments that stick in your mind when you consider letting someone else into your life and whether or not you can really quite frankly be arsed to explain when it's just so much easier to manage alone. You don't have to consider someone else's feelings, you don't have to worry about what they think of it or whether they think you're faking it because you look well from the outside or you 'seemed fine' yesterday.

I remember being at University and in a conversation with a group of people one of the boys referred to me as 'damaged goods' because I was in and out of hospital. He said it in a passing comment as though it was a joke and that it was totally okay to voice that opinion. I don't think about it often but sometimes that comment comes back into my head and I do think why would someone want to be with someone who's condition is so unpredictable and they can't just get up and do things like all the other girls my age. (Then I remind myself, that I am hilariously funny so that's definitely an upper hand I have! 😜)

One thing I hate is feeling like a burden, I don't want to feel like I have a carer or someone to 'pitty' me. I've felt this with friends before and it's totally my own feelings, when we've had to come home early because I'm not feeling great or when we've been at a festival mid way through an act and I need to go back to the tent. I'm very fortunate, none of my friends have never made me feel like my condition is a problem. It's just a natural instinct to feel like you are ruining something for someone else.

I completely understand that openly discussing IBD is not for everyone and nor is having a partner with a Chronic Illness, but I'm hopeful one day I'll be able to feel comfortable enough to accept that this is me and accept that someone else is totally fine with that too. 

For me it's my reality and my way of life, I can't switch it on and off and I can't control how it effects my body all I can do is learn how to manage what my Colitis throws at me and continue to remind myself I'm a BAD ASS B!TCH. I've survived 100% of my bad days thus far.

I've attached a photo below so you can all get a real image of my current relationship status and another reason I'm totally happy by myself, I don't need any negative energy nagging me for demolishing a large bowl of chocolate covered cornflakes in bed when I feel like crap.. 😏

That's all for now... x

Talking SH!T

Talking Sh!t.....

Literally the above... talking about a poo is such a taboo topic for most people.. not for us, those with IBD, it's as casual as saying 'good morning'.

Girls pretend they don't do it.. boys pretend girls don't do it...
Until, you mention you have IBD.... THEN it becomes the talking point of every single conversation. 

Naturally it isn't the easiest conversation to have, strange really as we all do it despite how often. 

For those who don't understand Crohns or Colitis they often define it as 'oh you sh*t alot' God the amount of times I've heard that, and the amount of times I wished that was just the case. Basically that's the only part people understand, or choose to understand so it's the only part they'll focus on. 

For some reason this also makes others feel like they can be open about their own bowel movements.. So, LUCKY ME.. I get to hear all about everyone else's excrement!!

I'm not in any way precious about toilet talk.. those who know me well will know this, sorry guys! Lol. When you spend majority of your time in the bathroom you soon lose some of the embarrassment. 

Like when you've been in the bathroom a little while and someone says 'oh nice poo was it? tehehe' as a joke... I'm literally like 'na, only a little bit came out have to go back soon'. 
I'm not saying its a pleasant conversation in any way however it is part of life and I'm totally ok with the fact I'm a GIRL AND I POO. I feel like its a real therapy for those people that don't usually discuss it, they must save it all up then blurt it out when they see me. Which I’m fine with, maybe one day I’ll have a talk show just for people who want to talk utter 💩 you heard it here first people.

Apologies girls for exposing your deep dark secrets that take place in the bathroom! I hope your relationships can sustain this difficult reality! 😉

Since I was diagnosed and I went to uni at 18 my grandpa used to buy me 'essential' packages including food and cleaning products etc. One item has continued and 8 years on he still buys my toilet rolls...every Monday he does his weekly shop for himself and my grandma. I can guarantee when I come home from work they'll be a pack of toilet rolls on my doorstep, bless him!
I always laugh to myself when I think of our conversations... he often will buy from different places then ask how I found the quality of that certain toilet roll.. just the sort of conversation everyone has with their grandpa, right?!
Anyway during isolation for obvious reasons he hasn’t been doing his weekly shop and he wouldn’t rest until he knew I had my toilet rolls. So thanks to online shopping I got my toilet rolls on my door step 45 rolls of Andrex only the finest  😇

I will also carry a back up toilet roll and toilet spray in my bag (sometimes chuck in a spare pare of underwear for good measure) it's my own version of a survival kit. 

So, lets be honest, Poo isn’t the top topic of discussion over the dinner table but in all seriousness if you are struggling with IBD (diagnosed or undiagnosed) it’s important to find someone you can talk to. It’s absolutely nothing to be ashamed of (It took me many years to realise this) and by doing so we can make poo, less taboo.

Anyway, enough chatting SH!T for one night. x

Infusion Confusion

I know you’re all gutted I’ve been so quiet on here.. so here’s another post! 

This one is dedicated to my treatment. I get asked by my friends etc what is an ‘infusion’ and what does it do.. so here’s a little post dedicated to answering exactly that. 

I’ve had an up and down few weeks where I’m not feeling 100% and generally just exhausted. It scares me because I don’t want another treatment to fail and I’m so so desperate for remission. 

My current medication is via intravenous infusion (a drip into a vein in your arm). I’m on Vedolizumab also known as ‘Entyvio’ which is slightly easier to say whenever someone asks 🤣.

Anyway, I’ve been on over 10 tablets a day since I was 17. Throughout the years I’ve tried various other forms of medication on top such as steroids and Humira injections. They deserve their own blog post though for being such bastards 😇

The tablets are meant to ‘control’ symptoms and manage things however since my major flare up in 2015 I haven’t managed to get things fully under control.. so that’s when these other drugs come in.. the big boys, the Bombay bad boys! I’m lucky in a way, each time I go back to my consultant with another failed treatment, there’s a new one to try! The research and development into new medication is amazing. However none of them guaranteed to work, of course as I’ve found out. I dread the conversation ‘we may have to think about surgery’ which I have every single appointment.. it makes me feel sick and I cry each time, just at the suggestion. 

I hear/read such amazing stories about people getting their life back and feeling amazing having a stoma bag, but I cannot imagine my life like that. I guess in a way feeling like this has become the norm for me and I’ve forgot what it’s like to feel well.. but occasionally it gets on top of me and I realise I can’t continue to ‘manage’ as I am. 

My current tablets are Pentasa (mesalazine) this is a slow release drug which aims to reduce inflammation and relieve the pain and Azathioprine this is used to treat autoimmune diseases where your immune system is attacking your own body, like Crohn's and Colitis. They are immune suppressants therefore my immune system is super weak and I’m prone to infections.. it also means it takes me a longer time to overcome things like a common cold and it usually develops. 

My infusion is now done every 8 weeks, it starts as weekly, then 4 weekly and remains at 8 weekly in the hope you’ll enter remission. Entyvio (Vedolizumab) works by stopping the white blood cells from entering the lining of the gut and causing inflammation meaning this should manage the flare and you should then be able to carry on with the tablets to control the symptoms of the condition. 

I’m unsure how much longer I’ve got left on this drug before they say it’s no longer working. These drugs are extremely expensive and they do not recommend being on it for long periods of time. To put it into perspective I done a bit of research.. ooh look at me! I found a document published in 2015 which states The NHS list price is £2050 per 300mg of vedolizumab this is the generic infusion dose and what I have each time,  And people still complain about the NHS!! 

Since 2015 this is the one drug which has dramatically improved my condition however I’m still not quite in remission and I’m still having some worrying symptoms. I have blood tests done a few days before my infusion due date to make sure it’s safe for me to go ahead, I go to the hospital day unit and sit in a lovely arm chair for a few hours. I have my infusion then I have to wait in case I have a reaction to the drug, at this point I’m normally fast asleep. It makes me feel automatically drained and achey; these are the two side effects I feel most along with some nausea.. these symptoms usually last about 24 hours. 

The nurses are so lovely and try make the process as smooth as possible. Patients visit for all sorts of treatments and durations of time, I’ve met some inspirational people in that room. I’ve also met some particularly irritating people in that room.. some people bring their relatives like it's a full day out (you get offered a semi defrosted sandwich and a yogurt so basically afternoon tea). 

One lady told me Eastenders was too aggressive and I should watch Emmerdale instead, I wish I could have told her to get out of my pub!! 

They say nothing in life is guaranteed.. I often hope that ‘they’ are right and one day there will be a cure instead of just remission and learning to manage. 

Anyway, that’s all for now. Here’s some photos to really set the scene for you all 😘