The Crash

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It started off so well.

Photo 1 

I spent the "school day", in my pyjamas, on the sofa, watching Netflix. I did absolutely eff all, but it was a choice. It wasn't because I was fatigued. It wasn't because I was experiencing increased pain (I say increased pain because I am always in some degree of pain), my Ostomy wasn't misbehaving, neither were the guts I have left. Everything was good. I felt relaxed. I felt happy. I felt excited because I had a dinner date planned later in the evening with the Girl Child. I got showered at my leisure, listened to Hamilton as I washed my hair, sang along as I applied my make up. I felt the sun on my cheeks as I collected mine and my neighbour's children from school. I then took the Girl Child to my my mother's house for a party planning meeting. My INCREDIBLE mum and the Girl Child are throwing a Halloween party together. I witnessed the two most important ladies in my life planning, and brainstorming ideas, picking out decorations, designing their menu, and inventing spooky party games. I could feel the energy passing between them like electricity. It filled my heart with joy. All was well.

Photo 2 - Driving the Girl Child to her French lesson, the Girl Child is compiling her play list, as the soundtrack to the party has to be perfect. I send her into her lesson, and return to my car to wait. I've brought my laptop so I can get some writing done. I'm feeling good. I'm being productive. As I am sitting in the car waiting for the Girl Child to finish her lesson, I start to feel anxious. Then I feel freezing cold and boiling hot at the same time. Then my skin starts to crawl, and the air in my car starts to feel thin. Then the pain begins to creep from the tips of my toes up to my hair follicles. This all happens in the space of a few minuets. It feels like hours. And then I remember. It's Fentanyl Patch Change Day, and I have no patches with me. This means three things :

1) I can no longer take the Girl Child out on our dinner date. She will be upset and disappointed, but she won't want to admit it, and I will feel guilty for letting her down.

 2) I have to drive home with the Girl Child in the car, and I am becoming less and less capable of doing this safely with each second that passes. 

3) The Girl Child will likely witness me, her mother, in the start of withdrawal. 

The thought of this fills me with dread, which makes my anxiety increase, which makes all the other symptoms worsen. I have to get it together. Remember my training. Act my ass off. Bring my A game, Oscar worthy performance of everything being fine. As soon as the Girl Child sees me, she knows that everything is not fine. I tell her that I can't take her to dinner after all, and as quickly as she starts to kick off, she stops, as she can sense that all is not well with her Mummy. She does an incredible job of talking to me about anything and everything, giving me something to focus on as I grip the steering wheel for dear life for the entirety of the journey home.

Photo 3 - I am in my safe place.

Fenatny Patch changed. Liquid Oxycodone administered. I've had a 20 minute nap, and although I am feeling a lot better than I did an hour ago, I still feel horrific. The Girl Child has barely left my side. She has asked me if I am alright countless times, I think she is finally starting to believe my response.

I hate that she has had to see me like this. I hate that she has to worry about me. That isn't her job, I should be worrying about her. I hate that I have let her down. I hate that I am at the mercy of my body and the drugs that help it function.

This isn't what I wanted to write about today. I had planned to be writing about the amazing day I had experienced in its entirety, not the amazing day which imploded on itself.  I'm not even sure if all these words were needed. Look into my eyes. The journey of today is there for you to see for yourselves.

The crash is coming. No matter what.

Loving somebody with a chronic health condition is hard. Having to watch the person you love suffer day in and out with pain and fatigue, and wishing that there was something you could do to take the pain away from them, to help them, and knowing that there is nothing you can do or say that will ease their pain - I get it, it's tough.

Watching the person that you care about run themselves ragged, using up every precious bit of energy that that they have, doing things that you deem unnecessary. Why can't they listen? Do less? Pace themselves? That way they will have more energy at the end of the day. More energy to spend with you.


I have spent the past 15 years in varying degrees of pain and fatigue. I have spent the past 15 years trying to fathom it, figure it out, the magic ratio between energy expended versus pain and fatigue experienced. I have gone from working 60 hr weeks, to doing nothing at all, and everything else in between. The one thing that has remained constant, is this - It doesn't matter how much or how little I do, eventually my body is going to fail me. Eventually, I am going to crash. Eventually, I am going go down, go under, into the abyss of pain and fatigue. NO MATTER WHAT.

I know that this may be a difficult concept to comprehend. I know that it appears that my health is at it's worst when I "do too much", that my pain levels are at their highest when I "do too much", that I would be better, less tired, in less pain, more able to spend time with my family if I were to take it easier. I know that in a logical world this would be the case. But there isn't anything logical about illness. There isn't anything logical about chronic pain and fatigue. It comes when it comes, and it eases (because it NEVER goes) when it eases. NOTHING I DO OR DON'T DO IS GOING TO CHANGE THAT FACT. I know this, because I have spent the past 15 years living it.

I have spent the past 15 years living at the mercy of a body that hates me. Everything I do is at it's will. When it decides that it has had enough, it shuts down, often with little to no warning. It has taken me 15 years to accept that I have no control over this. That this is my life now.

 Accepting this has been difficult and painful, but now that I have, I feel strangely liberated. For the first time, in 15 years, I feel free, and this freedom has given me back my passion for living. This acceptance has lit a fire in me that I thought was long dead. I have spent so many years worrying about when the next crash is coming, that I haven't enjoyed the moments between the crashes. I spent my time trying to fend the low times off, by being cautious, and trying to conserve my energy, and in doing so I would feel bitter and cheated when the crash arrived because I hadn't done anything to warrant or deserve a crash. I've spent 15 years living in a cycle of fear and bitterness.

NO MORE.

I'm done with fear and I am done with bitterness.

Now that I accept that the crashes will come regardless, I am able to LIVE. I am able to DO, and I am determined to ENJOY.

I know that this sounds crazy and nonsensical, but it is what it is.

You, as my loved ones, my support system, have a choice to make. You can choose to disagree with me. You can choose to disapprove of my choices. You can choose feel angry, and cheated, and robbed of your quality time with me. You can choose to believe that if I were to only slow down, do less, take it easier, that I would be in less pain, less fatigued, and you can choose to be angry with me when I don't heed your advice, and continue to keep going at full pelt. You can choose to feel strangely vindicated when I go under because you will have been proven right. You can choose to feel guilty for feeling vindicated. You can choose to feel neglected and left behind when I choose to not heed your warnings and continue to "do". You can choose to not be supportive of my choices, and be obvious with your lack of support. You can tell yourself that your negativity comes from a place of love. That is your choice. Perhaps that is the process that you need to go through, the same cycle of fear and bitterness that I struggled with for 15 years.

 Or you can choose to take me at my word. Choose to accept that I am the one who lives in this body. I am the one who spends every single second of every single day in various degrees of pain and fatigue no matter what. Accept that I have finally found a way of living with myself and my defective body. Accept that for the first time in 15 years I feel at peace, and that peace has brought me joy, and that joy has brought me a new lease on life.

Accept that I am going to go under, eventually, no matter what I do or don't do. Accept that I am fully aware of when I am doing too much and trust that there is a reason for me doing so. Accept that I am fully aware that with over exertion the crashes may come sooner, and trust that I know when I have pushed myself too far, but I did so because the joy of the exertion was worth the recovery period. Accept that I will come through the dark times, and enjoy the better health days WITH ME. Live them with me. Cheer me on when I try to fly, instead of worrying about when the fall will come. Because the fall WILL COME, whether I am flying or walking, enjoying or worrying. It is coming. Eventually. No matter what.

Accept it.

 I have.

Removing my colon gave me spots

For the past few weeks, my skin has decided that I am teenager again. My forehead looks like a Dot to Dot, my cheeks, chin, and nose are covered in a multitude of spots, pimples, zits and whiteheads. It is taking all the will power I posses not to pick and pop the map of mini volcanoes on my face. It's strange, because I wasn't afflicted with "problem skin" when I WAS a teenager, I was blessed with flawless skin. I was that annoying friend that listened with a sympathetic ear to my friend's pimple woes, but I couldn't empathise, as I was secretly jealous that they had pimples to pop (yes, I am that girl who watches boils being lanced on YouTube).  Fast forward 20 something years, and I can finally empathise, and it's miserable. Even worse, my face is now covered in scars as I have gone into a pimple popping frenzy.

I started to worry about what could be causing it. Could it be a hormone problem? Because that's exactly what I need, another health condition to deal with, on top of  Inflammatory Bowel Disease, Chronic Fatigue, Chronic pain, and a permanent Ileostomy.  I then started to think that I was having sympathetic break outs. My daughter is entering puberty, perhaps our hormones have "synced". What better way to teach her how to get through the hell of "blossoming into a woman" than to go through it with her?

 I won't lie, it's been getting me down.

Then I remembered. The skin is the largest organ and it requires hydration in order to flourish, and because I have an ileostomy, I am prone to dehydration.

One of the main jobs of the Colon / Large intestine, is to extract water from the food that has previously had its nutrients extracted in the small intestine. This water helps to keep the body hydrated. I don't have a Colon, therefore I need to take on more liquids, and I am really bad at this. It's not that I don't like water, because I do, It's just that I forget to drink. Last night, as I was complaining to my better half that I had a headache, I realised that I only had one drink throughout the whole day, and I didn't even finish it. Add in the fact that this September is the warmest one in decades, July and August were equally glorious, and I have spent most of this summer outdoors in as few clothes as decent. The answer to my pock marked skin becomes glaringly obvious.

That being said, I will be mentioning my terrible skin to my GP when I see him next week, just in case there is something more insidious going on. In the mean time, I am setting alarms to remind myself to take on fluids regularly throughout the day, I'm aiming for three litres. I am also taking my daughter on a skin care shopping spree, Simple products for her, Clinique for me. I also intend to use this as an opportunity to teach my children that water is magic juice, to be savoured and appreciated, and that
popping you pimples is as damaging to your skin as it is satisfying to your soul!

The day I learned to appreciate my new bag of crap

Today, my family had its annual Thanksgiving celebrations. It's always a large, joyous affair, with an obscene amount of food, which is only matched by the amount of love in the room. Coming from a large American family, Thanksgiving has always been my favourite holiday. As a child, it was the one day of the year where I could have as many friends as I liked over to play, and we could eat as much cake as we could stand. As I grew older, it became the one day of the year when I knew I would see the best of all of my loved ones. This is because, before we are allowed to eat anything, we all have to say out loud what we are thankful for. Every year, my closest friends and family (this year, a mere 30 of us,) stand before each other and declare what is in our hearts. It's a beautiful thing to be a part of. I spend the week leading up to it thinking about what I am thankful for. Each day I think of more and more things that I want to give thanks for. Each day, I am reminded just how blessed I am.For the past decade, I have mentioned the National Health Service as one of the things that I am most grateful for. For the past two Thanksgivings, I have given thanks for my Bert, my Stoma.

Today, I didn't. Partly because Bert is no longer with me. He was replaced in April with Ernie. But I couldn't bring myself to give thanks for Ernie, because for the past few weeks I have been seriously pissed off with him (Yes, my stoma is a him).


I have had a rough couple of months with my ileostomy. I fell out of love with it. Ernie is nowhere near as easy to deal with as Bert was.

With Bert, I could go three days without having to change my bag (leaks non withstanding). Ernie wants a fresh pouch every morning.

With Bert, I rarely leaked, and when I did, I caught it before it became a horrendous disaster. Ernie is a sneaky mister, who will throw a leak just for the fun of it, and often I won't know realise it's happening until it's running down my legs.

Bert was a quiet little thing, discreet, respectful, shy almost.  Ernie is a loud show off, who will sing the songs of his people at the most inopertune moments, and loud enough for everybody in the room to hear.

I loved Bert. Bert was well behaved, did as he was told, and knew who was the boss. Ernie is a little shit, who never listens, thinks he runs the show, and up until a couple of hours ago, I hated him.

9pm on a Sunday night. XFactor has just finished, I'm a celebrity (not Downton, which I am still quite sad about) was next on the agenda.

The other half stands up, laptop in hand, and starts to walk out of the room. This can only mean one thing - he needs a dump. So I ask him if he would mind if I went in first for a quick bag empty. He graciously sits back down, and I head to the throne room.

"SHIT! BOLLOCKS, FUCIKTY FUCKBALLS."

"What's the matter?" Calls the other half, with genuine concern in his voice.

"I'M COVERED IN SHIT." I scream back.

The next few minuets are spent with me cursing both under my breath, and very loudly, as I try to stem the flow and clean myself up enough so I can find a new bag, cut it, and head to the bathroom for a wash and a bag change.

I exit the throne room to find my other (and at this point, better) half waiting for me in the hallway with a freshly cut bag. As he hands it to me, I know that THIS is love. I also thought that he really should have got higher billing in my "things that I am thankful for" speech of a few hours ago......

I head to the sink, fill it with hot water, look for my adhesive remover spray, dry wipes, black waste bag, stoma powder, barrier ring, whilst holding a sodden, soiled tissue against my abdomen.

I take the bag off. Mess is everywhere. I can hear my other half in the throne room next door, watching a video of a Dot matrix printer "singing" The Eye of the Tiger, chuckling to himself whilst he takes a dump.  Meanwhile, I am stood at the sink, trying to clean myself up, while Ernie erupts with stool like Mount Versuvious. As quickly as I am clearing it up, he is pumping it out. Bert never did that. Bert always seemed to know when I didn't have a bag on, and he would wait to "go" until it was safe and clean to do so. Ernie, it appeared, also knew, and decided to have a party. All over my sink, tummy, legs, and bathroom floor. The swearing got louder, and more obscene. It would be quicker to tell you the swear words I didn't scream. My other half, at this point, joked that he was recording me. It was as I was telling him that I didn't effing care, that I noted just how ludicrous the situation was. It was also when I realised that I would much rather be stood at the sink, covered in my own crap, swearing at my stoma, than sat on the toilet, having a dump the old fashioned way whilst watching stupid shit on the internet.

Because going to the toilet the old fashioned way means I would still have my colon. Having my colon means pain, and blood, and disease. It means accidents in public, and extreme fatigue, and joint pain, and swollen eyes, and not being able to leave the house, and not wanting to be more than 10 ft away from a toilet. It means not being able to travel, or have days out with my children. It means spending weeks on end in bed. It means worrying about when the next flare up will hit. Going to the toilet the old fashioned way was awful, and I never want to do that again. For every day I suffer with fatigue with Ernie, I had 10 with my colon. For every day I haven't got the energy to get dressed with Ernie, I had 20 with my colon. For every time I have stood up to find myself covered in my own crap because of Ernie, I had a dozen accidents with my colon. For every day I didn't take my children out 

 because of my colon, I have doubled the fun times I have spent with them because of Ernie.

As I stood there begging Ernie to stop giving me shit so I could get a clean bag on, I remembered what my life was like before him. So I stopped begging him to stop, let him do his thing, and when he was finished, I thanked him for giving me back my life, and apologised for not thanking him earlier in public. No he isn't as well behaved as Bert was,but he isn't Bert, He is Ernie, and it is up to me to stop complaining and comparing him to his predecessor, and take the time to get to know him, for him. He's going to be with me for the rest of my life, after all.

discovering that you are covered in your own crap because of your ostomy, is seriously rubbish. The alternative though, for me, was far worse.

My Bag of Crap

11 years ago, I was diagnosed with Inflammatory Bowel Disease. Ulcerative Colitis. At first I denied my diagnosis. I ignored it. I tried to carry on with my life as if nothing had changed. This meant that I wasn't taking my medication regularly, and I wasn't respecting the fact that I now had an incurable disease.

 My condition deteriorated, as did my health.When I started researching what it might mean to have an Ostomy (about 5 yrs before I actually took the plunge and got mine), all I was able to find was pictures of people who were much older, and much lighter than me. The impression that I got (wrongly) was that Ostomys were only needed by the elderly. It totally put me off. I pushed the idea of surgery aside as something that was NOT for me.

A few years later I was rushed into hospital. I was desperately unwell. I had had my darling boy (my second child) 8 weeks previously. So there I was, a new mum, separated from my baby, and facing an emergency surgery to remove my colon. In the end, medication worked, and the surgery was avoided, however, I realised that it was only a matter of time before my colon had to go. So I went online again. This time, I found other young women living with an ostomy. I followed their pages, watched their Youtube videos, immersed myself in all things "stoma". These women inspired me, and showed me that life with an ostomy didn't have to be a tragedy. That I could continue to be vibrant and sexy. That I could live a full life BECAUSE of my ostomy, not in spite of it. When I finally accepted my health issues, and realised that I needed to have surgery, I decided that I wanted to turn my illness into something positive. 

When I woke up from having my colon removed and my ileostomy formed, I told my Mum that it was my aim to get my face associated with a company that makes Ostomy bags. I wanted to be a smiling face, a happy face, a strong and confident face that was happy with my life with my ostomy. I wanted to be the face that I needed to see all those years ago but didn't. I wanted to be one of the faces that I eventually did find when I needed them the most. 

Today, I am that face. Coloplast - The industry leaders in intimate heath care products, have made me their face. I couldn't be more proud, or happy.