“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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Acceptance

 

Lately, people have been asking me how I’ve become so okay with how my life currently is. I think they mean to ask ‘how have you been able to accept your stoma so well?’ because it’s only been a little over six months since my operation. 

I think it’s down to three things, really:

1.       I have lived with a chronic illness for five years. I’ve had all that time to build up my own way to accept whatever circumstances have been thrown my way; both with my health and a result of my health. So, I learnt a while back to ‘roll with the punches’ and to ‘see the positive side’ – because there is always one, you just have to be willing to see and find it – through having had counselling sessions. From these, I found out a lot about myself but also discovered new methods to help me cope.

2.       At my first surgical consult in January 2016, my surgeon explained that my Right Hemicolectomy could result in a temporary stoma – about a 5% chance. I decided I had to get my head around that, so feeling okay about maybe having one and preparing myself for one, was helpful when I finally did get my ostomy; I just didn’t realise it would be so soon.

3.       I have a curious mind. I am fascinated by how the body works – more so now that I have an illness – so having my insides come outside of me, I think, is quite cool. And I just see it as another quirk of mine – I have a bag of poo on my belly!

In addition to that, my ability to see the funny side; being able to laugh and joke about it, just makes it more normal to me and everyone I interact with. I wouldn’t be without my support system of family, friends and medical professionals who have guided me through recovering from major surgery and living with an ostomy.

So, now that my acceptance is here to stay, what do I intend to do with it?

Well, I hope that by me being ‘okay’ with my ostomy, will make it okay for others to think it’s okay too. The raising of awareness; of letting people know that this is not a bad thing that has happened to me, it is something I have had a choice in -  something I am proud of having - is something I am happy to partake it. And so far, it’s led to some very cool and exciting opportunities and I have been able to connect with even become friends with some great people.

Part of raising ostomy awareness is to help non-ostomates is to see an ostomy as ‘normal’ and acceptable. It is not something for an ostomate to be ashamed of. And it certainly isn’t something to used as an insult or as a derogatory term. Ostomies come in lots of forms and for many reasons, to many different types of people. There should not be a judgement here.

Let’s break down the walls and start small.

If you are curious about an ostomy – my ostomy, let say – then ask. I am happy to answer questions and queries.

You can follow my adventures with a chronic illness – and my new life with an ostomy – at www.youngcrohns.co.uk

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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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Being Chronically Ill at Christmas

Each year I am so thankful I make it to the festive period and survive it. 

Why? 

Christmas for me is a time to reflect and see what I've been through. It gives me strength for the year ahead. We can draw a line under what has happened and focus on continuing my good streak. That's what it always feels for me; I am in a game with my health, praying nothing goes wrong, praying I don't catch something, praying I make it through another season without an admission. 

This year I look back and despite having had two surgeries and many months of agony, I am not hateful or woeful. 

I am extremely thankful. 

Isn't it ironic that to see what you're most thankful for you have to go through something awful? I know that my surgeries might not be the 'most awful thing ever' but to me, in those bleak moment, it was awful. Those days unable to eat, unable to drink, feeling weak and feeble, dependent on everyone else helping me, not knowing if I needed medical attention or just waiting it out. You already know how my summer ended, with my ostomy being created. 

But those months in between surgeries and even leading up to the first one, I was in agony and I did wonder what on earth I had been doing before hand to let it get so bad. But I needed to hear it wasn't my fault and that it was just my disease, it couldn't be helped but it could be fixed. It would be fixed. It would need fixing twice, but it would be fixed. 

I would be fixed.

So who do I thank and how do I thank them?

That's something for another day, another post. Another train of thought. 

Being chronically ill at Christmas is different than any other time of the year because it is hard to shy away from being sociable. It hard to be away from family and loved ones. I am not necessarily forced into be out and about but I do feel that obligation pulling at me to with people who love me, so I can show and tell them that I love them too. 

Being ill yesterday - or any day surrounding Christmas - is hard. You have to muster strength and mental ability to get your body through the day. I struggled abit but I slept well for it. Sleep is so important this time of year for me. What else is key is maintaining a regular routine; eating breakfast at the same time, trying to stick to the 'correct' foods and not indulging too much. This has been key most years but even so much more now with the new ostomy. I have to keep hydrated. I haven't restricted myself in food or drink but I've been sensible and thoughtful about what I've had. The only thing that is some times unavoidable is the time we have been eating, but I respect that aspect and allow it to be more flexible at this time.  I am just happy to be here, in the presence of my family and not in hospital. I am healthy and grateful.  

Being ill now has a slightly different meaning, but by no means will it go away. I will always have issues but I am learning to be better informed, take more of an interest in my body and respect that my IBD will always be around, it would be cured. Accepting 'my fate' hasn't been easy but I am not fighting against my body. I am fighting to save it from being or getting worse. 

Each day is one more chalked up for a win over my illness. Every. Single. Day.  For both my ostomy and my IBD, each day is a learning experience. There isn't always something to battle or to win over but it is one more days with my illness than without it. 

I am here despite having a chronic illness. I am here because I have an ostomy. I am so relieved that I am. 

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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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