“Adding scars to my body in order for a higher quality of life.”

I always wondered what sort of person wanted to have surgery.

I always wondered how you could get to that point and want someone to cut you open.

I always wondered, until it happened to me.

My Timehop is a good reminder of what happened a year ago, or two or three years ago. It serves to remind me just how things have improved.

It allows me to reflect and really contemplate what has happened, how much I put up with, how long I was unwell for and just what exactly was my reality for so long.

After I realise that, adding scars to my body are nothing compared to how well I feel now.

I didn’t expect surgery to fix me, not at all. I expected some sort of medication regime to kick in once I’d recovered from my first surgery. I expected a lot and none of it happened. And that is just how it happens for some people. I didn’t moan too much – I wasn’t sure of what should happen, let alone how I would feel about it all – and I took it, I hope, in my stride. I’m sure those closest to me would beg to differ but we don’t talk about last summer a lot; as if it didn’t happen. I only got frustrated and angry when things just kept going wrong. And it was a constant battle to explain how my symptoms and side effects kept spiralling and no one at the hospital had any clue as what to do with me, on a small scale, when ‘things’ were just two or three things. By the time it got to being utter shite and my problems were six or seven deep, I had to call it quits. I had to be seen and refuse discharge until I was happy. That was my plan on the morning on August 12^th 2016.

Don’t get me wrong, I am stronger because of my scars, even though they are signs of a weakness in my skin and muscles. They are scars from a long and hard battle with Crohn’s Disease.

My battle is not over. It won’t ever be over.

But I fight when I need to fight. I am stronger and wiser and more sure of what I can take, these days.

And have my scars meant I’ve got a higher quality of life?

HECK YES.

Do I regret my past?

No. It’s shaped my present and future. My scars have this ability to remind me to not be ashamed of giving as good as you can give, at the time.

My stomach is not perfect, it never has been. I’d like it to be flatter but I have time to work on that. I admire it – the slight crookedness of the midline scar; the thickening at the top, the dip from my wound infection, the faded laparoscopic incisions. It is all the map of me.

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It Creeps Up on You

Diary Entry: 29.04.16

It's two weeks until my surgery.

I've finally had all my paperwork for my pre-op and my admission for the actual surgery.

It's come around fast. Faster than expected. Even though it was only a month away when I got told it was provisionally booked.

Planned anxiety.

That is what my first surgery was.

Lately, I’ve been finding myself getting less sleep because my head has been stuck in the past. I’ve been struggling to get myself focused on what is happening right now. I am lost in the memories of what I experienced last year.

In a physical sense, my surgeries have fixed me. But how much does the process of surgery affect you mentally? Has it fixed how I feel about being chronically ill? If anything, the physicality of having an ostomy – a badge of ‘honour’, a visual representation of my disease, something I can show to ‘prove’ my illness – has helped. I am sad it got to this but I am happy too. That conflict has the most mental impact.

I remember the days of being stuck in the bathroom, in agony, crying, unsure of how much more I would be able to handle, how much more I could take. When I would need to call it quits.

Nowadays, I am emptying my bag and its mere minutes. Even a change is 10 minutes’ tops. Ten minutes every 48-72hrs isn’t that bad; all things considered.

But how does that – cleaning my stoma, seeing it, looking after it, knowing I am different, knowing I am permanently changed, realising this is my reality – affect me?

Having an ostomy is not the fix some people believe it to be. I am one of the lucky few who has gone into remission and off medications since surgery. I don’t take this for granted at all. If anything, I am weary of this, it could change at any time. My previous IBD remissions have not last long so I am just enjoying the days as they come, at the moment. Even that is a mental battle; getting used to all these good days. They haven’t happened in such a long time nor for more than a few at a time. I am thankful for my current situation.

It doesn’t stop me from feeling lost, confused and downright sad some days. I keep my mental battled hidden, inside my head most days; trying to find distractions from these thoughts; keeping busy to take my mind to other places. I try and write; try and explain my thoughts in the written word. Actual words… they don’t come so easy. It’s still such a taboo subject. Not for fear of being judged but for the fear of admitting what I am feeling.

It is the lack of control I have over these thoughts. It started with one little memory creeping back into my head; when I realise the date or what I was doing last year on this day… and it soon spirals. My pre-surgery experiences were detailed in my blog and my diary. I know what I felt because I wrote it down, I relive it through my own words. It connects me back to my past; it’s like a flood – washing over me with such force, overwhelming and strong.

As I move forward, as the days go on and I get closer to last year’s “good days” I hope these memories move from being sad into feeling proud. I will hopefully see how well I have done – not that I don’t see that already – and how much of a difference a year has made. I will see how being different is a strength and it just one small piece of what makes me who I am, now. Not who I was.

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Fearful

I’ve already had five and a half years with my chronic illness. I’ve gotten used to it disturbing my life and disrupting my plans. It seems to have a knack for doing this, a lot.

What I am not used to is being without medication.

It feels foreign, almost like we are testing the IBD gods, tricking them into thinking I am well.

For all intents and purposes, I am well. Latest multiple test results came back clear; things are looking up for me since surgery last summer.

But that doesn’t mean I feel content with being in remission.

If anything, I feel more scared. I feel fearful.

I could take the medications and I got comfortable with knowing I needed to take them. My life was a schedule of medication, appointments and managing my IBD issues.

So much has changed, its overwhelming.

Despite going through hell before surgery, knowing that that wasn’t normal but I needed to go through it to come out the other end, fit and well. I also needed to get my ostomy to have the life I am currently living, and it is the only reason why I am doing so well. That, and my surgeon’s faith in physically removing my colon to improve my Quality of Life. And it sure has! And managing a stoma isn’t as bad as I have conceived it to be in my head. I have had nothing to be scared or worried about, the support and care I receive for my stoma is beyond anything else.

To go from that hellish Summer of 2016 to this remission of January 2017 – a mere five short months – is beyond comprehension.

Remission is one of those words that medical professional within IBD care throw around cautiously because it’s not exactly an easy road and doesn’t always happen, let alone being quite a complex goal to achieve. I have more important goals when it comes to my medical care; so, remission wasn’t high on the list. I had expected to need my mediation for a little while longer, be on the radar for a lot longer, just so they were watching me. I take comfort it that.

What do I have to take comfort in now?

I am more fearful being without my medication than I was taking it; and I was taking things which were potentially very harmful, but it was all outweighed by how absolutely rubbish my disease was making me feel, how much of my life it was taking away, how utterly miserable I was. And ultimately, those medications led me to surgery and this life I now lead. So, I appreciate all the shit I’ve been through, but I am still scared. Apprehensive and nervous, to boot.

I hope my remission lasts but I know it probably won’t. My ostomy has been life changing, almost saving my life – I can’t disregard my care nor my TPN days for also doing that – but how will it react to my body being unwell? So far, I’ve only had a stomach bug. I dread to contemplate how I’ll feel in a full-blown Crohn’s flare. But considering that that might not happen, I am here enjoying my good days, appreciating the NHS and loving my life, being proud of being an ostomate.

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Hitting the Wall (of Denial and Regret)

I think like most people, I am guilty of living in some denial and regret in certain aspects of my life.

When it comes to a chronic illness, it's just that CHRONIC. It doesn't go away, it can't be cured only treated and those treatments change and sometimes fail. It takes time to become comfortable with what you have, what is wrong with you and how you go about living with it.

I've always embraced my illness. I figured the sooner I accept it, the better I will feel right? I was half right. Whilst I did accept my illness and how it was going to always be in my life, I didn't always like the fact that it was always going to be in my life.  It's difficult to come to terms with that; the long term, chronic part of IBD. Not that any physical aspect of my illness is particular pleasant but it's the people I've met; the resilience, bravery and positive humour they show that keeps me going; it's what I strive to emulate.

So you get use to denying how you feel. You tell your doctors you're happy to go ahead with new treatments when previous ones fail: because your body is immunosuppressed or it's just plain useless or has it in for you. You don't tell them that you're angry that this condition picked you – because it's not genetic, I didn't give myself this illness, ITS NOT MY FREAKING FAULT! – or that you're tired of them trying new treatment after new treatment. You hope and pray every time you do start a new treatment or drug that this is the one that works. That it is the one that gives you some relief from the pain and / or symptoms you're experiencing. You hope you don't live to regret your decision to take harsher and more potent medications.

I don't support this living in denial or the regret of what could have been, I try to live in the moment and remain positive. I did this more than ever during my most recent hospital admission where they ended up taking my colon and giving me a ileostomy. But even with that, I have to talk myself into believe I made the right choices and I am happy with how my life is being lived. For the most part, I convince myself of this. I accept my reality and move on, do all those things a ‘a normal and healthy’ person can do.  But even I have my limits. And my triggers.

One is my actual supply of ostomy appliances. Their smell fresh from the box reminds me of all that I have lost and what I need to do for the rest of my life – change my appliance every other day and empty it 5-6 times a day. It doesn't hold me back but it makes me stop and think, I remember living with a colon for so long it's still very odd to not have it. And once my body is healed from this surgery, will my mind be healed? I doubt it. It is so very strong my doubt; I deny myself the feeling that this is not okay and that I'm only 28 for Christ sake! This is new and scary and I don't know how long that feeling will last. So I push myself to be okay with it all, not deal with the fact that I am scared because I've faked being okay with this to every one: I don't want to let them down, let their opinion of me change, of not being so brave and courageous. I don't want to be a failure to them.

 I will occasionally have moments where it is too much. And learning how to deal with them is an uphill struggle, a steep learning curve. But that is okay. I need to hear it's okay.

But.. I wouldn't want to live without my denial or regret. I think those two emotions keep me fresh. Let me explain; if I didn't feel a small twinge of regret and what if and wondering why I was still in agony, I  would never have sought medical attention in August and my diseased colon would have killed me. There is no one set way to solve the problems that arise with IBD and every patient is different, even though we do follow certain patterns. If I didn't suffer with some sort of denial; I wouldn't be human. I would be a robot.

Sometimes you just need to be reassured that feeling those ‘negative’ emotions is okay. It's a part of life, a part of being a human and it's part of this recovery. It keeps you soft in world where it is so easy to be hard and cold.

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When Surgery Gives You Life

What Makes Me, Me

If anyone has asked me this last year or even a couple of months ago, I would have struggled to answer.

Was I definable by my relationship? My role as a friend, a daughter, a sister, a cousin? My likes and dislikes?

My invisible illness, even?

I don’t hide the fact that I have Crohn’s Disease, a form of Inflammatory Bowel Disease (IBD) and it has defined my life – both physically and mentally – for the five years since I was diagnosed. For the majority of that time I’ve been able to work and enjoy my life because medication was keeping my disease under control. But this year I needed to have surgery to remove a portion of my small bowel. This went to plan in May but three months later I needed to have more surgery; this time to remove my colon and give me an ileostomy. This was major abdominal surgery and would change my digestive system for life.

An ileostomy is where the small bowel is diverted through an opening in the abdomen. The opening is known as a stoma. A special bag is placed over the stoma to collect waste products that usually pass through the colon, rectum and anus. You wouldn’t necessarily know I had this unless I told you.

Getting used to this new chapter with my health makes me question what I am doing with my life and who I am.

A coping mechanism for dealing with my IBD was always to mock my disease and try to find the funny within my, at times, horrible situation. I connected with other IBD patients and shared stories with them; trying to find some new ‘normal’ in my life. I knew I was different but that made me all the more awesome for it. I’ve also met some great and inspirational people, most of whom I can now call friends. What came from this was that I now defined who I was by what I had. Sadly, despite the strong medications, my disease was still progressing. The medical profession and my own IBD team promoted surgery as a last resort; so when I finally got to that stage, I was scared. I couldn’t believe how soon this had come around. I was also angry; I was hoping for more years without needing to be cut open – cutting means that reoccurrence was higher, complications and lowered quality of life – why wasn’t my consultant doing more to keep me intact? This anger didn’t go away easily. Not until I was living in pain every day over the summer did they finally found out I now had a very diseased colon; it needed removing, and sooner rather than later.

I committed to my subtotal colectomy almost as soon as it was proposed to me.

Considering how I felt about surgery, this doesn’t make sense. But you know what else doesn’t make sense? Living in pain every day, being symptomatic and unable to sleep and eat for weeks on end. I was assured that this surgery would fix me. Removing my colon and giving me a permanent ileostomy seemed drastic but I just wanted to get better; I was willing to try anything. That was the pain talking. That surgery was the turning point for me. I was mentally prepared for it, the hospital physically prepared me for it – giving me a PICC line to feed me with TPN – how well I coped with it, how well I lived life with it, was all up to me.

For the most part I love my ileostomy. It’s weird to love a stoma but I truly do. I’m oddly fascinated with it and taking care of it is just a new challenge to me. I’ve never felt so well with Crohn’s in all my years with it. Yes, I am still having to have Crohn’s medication to keep my disease under control and maybe it’ll get me into remission, and yes I’ve had to modify my diet and keeping hydrated but again; that is just a new challenge. All the ostomates out there who live with ileostomies and colectomies – yes, there is a difference! – show me that life with a stoma isn’t all doom and gloom. I am not ashamed to have one, its saved me from months of prolonged agony!

Yes, it’s not the ‘normal’ set up for a digestive system but it works. I am still here, I am happy and I am no longer define myself as “Louise with the Crohn’s Disease”.

My disease has shaped my life, but my ileostomy has saved me from being overwhelmed by it. My ileostomy is giving me back my life, free of pain and anxiety. The array of activities I can still do with an ileostomy gives me hope that I can finally take back control of my life, even the ambitions and goals that Crohn’s Disease did try and take away from me. From swimming to horse riding, travelling without the fear of needing the loo, holding down a job, relocating, leading a healthy and fun life; things which I feared I wouldn’t be able to do before. Most importantly, I’m not scared to try new things now. I actively want to pursue things that give me life experience instead of being the person who sits on the side lines, scared to try, fearing people’s judgements and comments.

I am proud to have a bag of poo attached to my abdomen. It’s the best move I ever made. It’s made the old me see who I can be.

It’s made me, ME.

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Guest Post: The Rag Doll Disease by Hayley Steed

It was in my second year of university I started noticing my body struggling. The first thing was that I couldn’t use a straw, my mouth just wouldn’t close around it but I didn’t think it was a big deal. Then it was paralysis of my face – I’d be doing my makeup and I just couldn’t move my forehead or make my lips meet. It got worse when my speech started to slur and I began to choke on my food. I went to my university doctor about 5 times in 3 months, asking for help to be told it was stress, anxiety, migranes etc. It wasn’t until I went home to my local surgery that someone realised something was wrong. I was referred to a neurologist but the waiting list was 2 months – in that time I dropped to 6 stone from not being able to eat and I have vivid memories of having to leave restaurants with my boyfriend from everyone staring at me whilst I choked, to physically putting my fingers down my throat and picking out food I was choking on all whilst holding my breath.

My neurologist, Dr A as we like to call him, sent me for MRIs and CAT scans immediately before I was diagnosed with Myasthenia Gravis, nicknamed the Rag Doll disease. It’s an auto immune illness meaning severe muscle weakness. Essentially my body’s immune system attacks itself and sends antibodies to kill the messages from my brain to my muscles, so they just don’t receive the message and don’t move. That’s anything from my eyes drooping, to not being able to smile, to my swallowing muscles failing, to my lungs struggling. Dr A wanted to admit me but only let me go home as my Mum is a registered nurse. He told me to cancel mine and my boyfriend’s first holiday together which was just 3 weeks later, and cancel the trip to America my family had planned for several months later in the year, which was when I knew how serious it was. One of the hardest parts still was sitting outside that hospital and ringing my boyfriend to tell him I was ill.

I started on medication and in December 2013 at the age of 20 I had a transsternal thymectomy (they cut open my chest and took out my thymus gland which had a tumour.) I was his youngest ever patient and they told me it had 1/3 chance of making me slightly better, but not curing, 1/3 chance I’d be exactly the same and 1/3 chance it’d make me worse. It’s such a rare disease, they know so little about it. They don’t know what causes it, or how to really fix it. Either way I’d have the scar which runs the length of my breastbone and three ‘bullet’ hole scars underneath from where they fed drains into my lungs, which they took out when I was awake two days later. The only thing I’m going to tell you about that operation is that because my illness is all about muscle weakness, they couldn’t let me have any painkillers before I woke up. Usually they’ve already hooked you up to a morphine drip so you wake up with painkillers inside you – I didn’t have that in case it meant I didn’t wake up. I woke up feeling the full effects of the operation, screaming.

A couple of months before my 21st birthday they found a blood clot in my leg so I was on more treatment for that, meaning I was not allowed to drink for my 21st. I nearly had to cancel my birthday trip to Rome but I pretty much told them that wasn’t happening unless I could die doing so. I went. I’ve had two relapses, one when my eye closed for about 2 months, I’ve no idea why. I had to cancel all my work experience and just stay at home for that time. The other was last summer. I had a week where I kept waking up in the night feeling very phlegmy, to the point I couldn’t lay on my back because I felt like I couldn’t breathe. Then one morning I woke up and I couldn’t breathe standing up. I went to A&E, was met by ICU and strapped up to IVIG, a drug which essentially restarts your immune system. I had that over a course of 5 days which left me exhausted but it worked. That’s the only time I’ve come close to dying from it. (I had to cancel another holiday me and my boyfriend were supposed to be going on).

Something that came alongside the physical illness, was the anxiety. It’s better now, but for the first couple of years of diagnosis, I just wouldn’t go out. I was terrified it would make me more ill, or if I went for a meal, I would choke and either everyone would stare or I’d die. I didn’t like people seeing me when they knew I was ill because I thought they’d be looking for signs of it and I didn’t want to see anyone who didn’t know I was ill and have to explain why I couldn’t speak properly all of a sudden. Now, even though most people know I’m ill and I rarely choke at meals, I still get panicky when I’m going to events or meeting an author that my speech or face will just drop and they’ll wonder why. It’s a vicious cycle because the anxiety and stress makes my symptoms worse. Sometimes I try to joke about it so if I’m with my friends for a special occasion I always take my pills and say ‘if we’re taking photos, let’s do it now whilst my face works’. My worst bout was after my second relapse – I’d wake up every morning in a hot sweat, panicking in fear of waking up and not being able to breathe again like before.

My friends now tell me how snappy I was after being diagnosed and I was – I was angry. I was angry at the hand I’d been dealt, angry that I wasn’t like them anymore, that I couldn’t be ‘normal’ and angry that none of them seemed to think it was a big deal. An illness like mine, one which can’t be cured, brings a lot of frustration with it. It dictates every moment of my life – I decided I still wanted to work, which I do, and to live my life, which I do. But if I have an event in the evening after work, it will tire me out for the next few days. I can’t go to a different bookish event each night like I wish I could, I have to carefully plan. I can’t go to bed late, because if I’m tired, my muscles will be so much weaker. Numerous times I’ll be mid-way up a flight of stairs and my legs will give way – I just have to sit and let everyone walk by me until I’ve rested enough to go again. Most of the day I can’t smile, because my cheeks aren’t strong enough. I frequently look liked I’m mid-stroke and my medication heavily increases my risk of cancer. Rest is the biggest word in my life and it’s so frustrating, as a 20-23 year old to be told you can’t when you have always been able to and that’s always what I’ve struggled with most. If someone who knew me in my pre-illness years saw me now they’d be shocked. I used to love going out, I loved drinking and clubbing, I was loud and brash. I’m still quite brash, but if I go out, which is rare, I don’t drink because it’s a depressant and makes my muscles weaker. Even without alcohol, I can’t do stuff every day like ‘normal’ people can, I always have to consider what will tire me out, what will be too much first. It’s constant.

My scar then and now

Most importantly I think we need to stop putting illnesses on a scale. I had so many comments after being diagnosed like ‘at least it isn’t cancer’ or ‘at least it isn’t a brain tumour’ and yes, I’m so thankful I haven’t had to go through either, but does that make mine any less valid or difficult to live with? My own friends thought my illness wasn’t a big deal, until they nearly saw me die from it. But people can die from depression, from cancer, from Crohn’s, from epilepsy, from anxiety. So many people have a story like mine, of struggle and pain and difficulty. Mental and physical health don’t need to be measured or met with judgment of how bad they are.

This has probably been a quite depressive post so I’m going to list some good bits:
• It’s been nearly 3 years since I was diagnosed and I’ve gone from 40 pills a day to 8. I’m stable and have no signs of relapsing anytime soon *fingers crossed*.
• This was all going on in my 2nd and 3rd year of uni. I’d get extra time to finish my work after my operation and blood clot in 3rd year, and I got a First. I’m damn proud of that.
• I’ve been on several fantastic holidays which I haven’t had to cancel including driving the coast of California with my family and Rome for my 21st birthday.
• My incredible boyfriend has been with me since day 1 and has stayed throughout the most difficult times, even when I was freaking out about my ‘ugly’ scar.
• I’ve never been so close to my family – I had to call my Mum at 3am from my bed after coming home from the op to come and spoon feed me morphine because it hurt too much to move. After an experience like ours, you value everything so much more and we’re pretty much best friends. • I’m really happy – I got a job in publishing and my illness is settled enough to live with. I’ve got used to my life being toned down.
• Since my op I have skydived and abseiled to raise money for our charity – Myaware. This year I’m taking part in an attempt to beat a world record of skydivers and my Mum is jumping with me. If you want to sponsor me you can find my page at www.justgiving.com/HayleySteed3

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