discovering that you are covered in your own crap because of your ostomy, is seriously rubbish.....

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.

The Sinkhole

It started off so well. Today.

The sun was shining, the birds were singing, I woke up.

It was glorious, waking up, on my own, without any exterior help. No pain, and no mini voices disturbing my slumber.

I yawn, I stretch, I assses.

Bag change day. Do I have the energy? Yes.

In that case, will I take a bagless shower beforehand? Yes

Children still asleep. What time is it? 7.15 am.

Do I wake them now, or let them sleep a bit longer? Let them sleep, then I can hopefully have an uninterrupted bagless shower, and apply new bag without my three year old trying to poke my Stoma.

Kitchen a mess. Will I clean it? Not now, maybe later?

I head to the bathroom. Turn on the radio, remove my bag and get in the shower.

Heaven.

The hot water cascades over me whilst cheesy pop music plays on the radio. I sing along to Queen's "Don't stop me now", and the lyrics resonate deep inside - "I'm having such a good time, I'm having a ball..." as the water invigorates, stimulates, refreshes and renews. My skin is tingling, my stoma is behaving, I feel alive. I feel well.

The children come down. I fix them breakfast, pack their lunches, get them dressed.

 I assess.

It's a beautiful day. Do we walk to school or drive? Drive. I don't want to push it.

Success.

 I get through the school run without incident. I have a full day to myself. The sun is shining and I don't feel like shit. The world is my Oyster.

I assess.

Kitchen a mess. Will I clean it? Not now, maybe later.

Living room a mess. Will I clean it? Not now, maybe later.

I sit on the sofa, put my feet up, turn on Netflix.

Hours pass.

I assess.

 I have acheived nothing. The kitchen is still a mess, as is the living room. It is still a beutiful day and I haven't taken advantage of it. I have sat on my arse, only rising to eat, piss and empty.

I am consumed with guilt. I have spent the past three weeks doing nothing. The housework has been neglected, along with my personal hygeine and relationship with my fella. Today I was presented with an empty house and no fatigue - the rareset of gifts. The perfect oppertunity to pick up the slack, take the reins, restore some order in the house and do my job. Instead I chose to do absolutely fuck all.

 I CHOSE to do fuck all. I didn't do fuck all because I wasn't capable of doing fuck all, I did fuck all because I wanted to do fuck all. And just like that, guilt is replaced with glee.

I assess

My partner will be home soon. Will I have to go to bed early? No, I can stay up and spend some time with him.

My daughter needs dinner. Do I have the energy to cook? Yes.

I turn on the dishwasher, I wash some pots, I make her dinner. I am still feeling well.

My fella returns. He asks me what I did today. My rely -  Fuck all. We both laugh.

Out of nowhere, the niggling turns to discomfort, discomfort to pain, pain to agony. Just like that. No warning.

I assess.

What time is it? 8.00 pm.

Can I ignore it? Stay up and spend some much needed time with the Old Man? No. The pain is all consuming and written all over my face.

He looks at me, tells me to take a pill and helps me up to bed.

Defeated.

It started off so well. Today.

A race against yourself.

That heavenly moment between sleeping and waking. The moment when everything is as it should be. Perfect.

Just as your brain is telling your eyes to open, realtiy comes flooding back and it hits you like a wave, and as each memory from the day before consumes you, threatening to drown you in despair, you realise that somethng is different, and that dispair is instantly replaced with euphoria.

You notice that although you feel groggy, you also feel rested. Like you have slept, and that sleep has replenished your energy stores.

You stretch, open your eyes, and wait. Wait for the all too familiar bus to sneak up and knock you into a brick wall. But it doesn't.

Your mind starts to race. Can it be? Can today be the day that your body decides that it no longer hates you? Will you actually be able to get shit done? Have a shower? Brush your teeth? COOK? The excitement is almost too much to bear. You can take your daughter to school, give her a kiss at the gates. Walk home and feel the sun kiss your shoulders.

 You get up, still full of energy and now full of hope. Walk down the stairs and into the living room, to find your partner asleep on the sofa. He has selflessly set up camp down there in order to give you sole use of the bed in the hope that you will get the rest that you so desperately need. You hear your daughter stirring upstairs, and just as you're about to tell her the news that she has been longing for all week, that you are well enough to accompany her, you walk into the kitchen and you change your mind.

The eveidence of this latest bout of malaise surrounds you. There is the meal in the slow cooker that was started the day before but abandonded. The dishwasher, open and half full, it's remains remaining on the counters. The laundry - clean and dry on the clothes horse and line in the garden, the rubbish bin - full to the brim, begging to be taken out.

The indignant anger starts to bubble. you feel it in the pit of your tummy. Why has nothing been done? Why is nobody helping? Why does nothing get done unless you do it? And then you hear a snore from the living room. From the man on the sofa. The man who is on the sofa for you. The man who has spent the past week as a glorified taxi driver, taking you to and from appointments, the Doctors, the hospital, the emergency room, the supermarket, your children to and from school, nursery, their friends houses. He has organsied their meals, your meals, washed that laundry that is hanging on the line, wiped your son's bum, taken him to the potty in the middle of the night and ended up covered in piss as a result, watched helplessly as you are prodded, poked, stuck with needles, hooked up to drips, and all the while trying to build a business from the ground up, so you can remain in the house with the dirty dishes and overfilled rubbish bin.

So you take out the rubbish, fill the dishwasher, wash the pots, kiss your daughter good morning, and keep your mouth shut about walking her to school, as she has seen you still in your pyjamas and has rightly assumed that you won't be, and she doesn't mention it, and your heart fills with love and gratitude for the snoring man on the sofa who has done his best to hold everything together in your demise, and pride and admiration for the brave seven year old girl who unsderstands far more than she ever should about your chronic condition.

As you're folding the laundry, you remember the thing that should have sprung to mind the instant the euphoria hit. Your body is a tricky bastard. You may feel full of energy now, but that doesn't mean you
will in an hour or even ten minuets. You have a finite anount of juice, and you have no idea when it will be gone or how long it will last. You have a series of choices to make. Have a shower and brush your teeth, or finish the laundry? Make yourself some breakfast or finish the dinner you started last night? Try and do it all really fast thus expending more energy but potentially getting it done, or go slow and steady but risk running out of steam before the jobs are completed? You sit down, as the inner monologue is exhausting, and the second you do, you regret it as the act of standing up will utilise precious energy thus taking it away from a job already on your list.

The laundry gets folded and put away. A new load makes it into the machine. The ironing will have to wait, what's another few days matter when it's already been five weeks? The dinner is resumed. You can see the bus approaching, and you are almost against the wall. You make your way upstairs and back to bed. As the bus hits, you regret not brushing your teeth.

Overwelemed

Overwhelmed. That feeling you get when it feels like the air is pushing down on you, crushing you, and it's an effort to keep you head held high. And high is how you must keep it, otherwise they will know. Know that you are petrified that at any second it will all come crashing down. The life that you cherish with the people that you love, in the home that you have tried to make into a sanctuary, a safe haven.

Every day, you wonder if today will be the day when you crack. When you drop the balls that you have been struggling to keep in the air. As you open your eyes, still damp from the tears that send you to sleep night after night, you silently pray that this morning will be different. This morning you won't have to coax, cajole, beg, plead, scream, shout, cry and curse. That you won't be left feeling demeaned, humiliated, deflated, defeated, hopeless, helpless, when, yet again, you fail. You can feel your ever hardening heart filling with anger, resentment, bitterness when all it wants to feel is love and compassion. You remind yourself that it is not intentional. But that doesn't make the pain any less real, and the pain is all consuming. It is exhausting. It sends your mind to an unfamiliar place. A place where the sound of your children's voices make you recoil in fear, makes your fight or flight response kick in as you know that at any moment the tears will start and you can't bear for them to see. A place where you wish you were invisible so you could crumble in peace. A place where solitude is all you crave. And sleep. Uninterrupted and dreamless sleep. Oblivion.

You're driving, and you catch yourself drifting across the the lane into oncoming traffic, you haven't been concentrating as your mind is still in that unfamiliar place, and for a nanosecond you contemplate staying there, how quickly the pain could be over. And as quickly as the thought crosses you mind, you realise how wrong it is, and suddenly you can't breathe. You have to pull over as your vision is blurred with tears as you cannot believe what has just happened. You realise that you are allowing the disease of another permeate your psyche. Muddy your waters, comprimise everything you hold dear. And you are left wondering if you have been worrying about the wrong person. Putting your efforts into the wrong cause. If in fact it is you that needs help. That you have been so obsessed with the depression of another that is has snuck up and bit you on the ass and you hadn't even noticed.

Overwhelmed. That feeling you get when it feels like the air is pushing down on you, crushing you, and it's an effort to keep you head held high. And high is how you must keep it, otherwise they will know. Know that you are petrified that at any second it will all come crashing down. The life that you cherish with the people that you love, in the home that you have tried to make into a sanctuary, a safe haven.

Shaved head

Today, I shaved my head. I had managed to last almost a year with hair, but it has started to recede again. This isn't the first time I have had to shave, yet for some reason this time has been the toughest. UC has robbed me of so much. It took my lively hood, stopped me from being able to work and made rely on state benefits. It robbed me of the ability to breastfeed my children for longer than a few weeks. It has destroyed friendships as people couldn't understand why I kept canceling plans, relationships, taken my confidence, left me feeling worthless and a failure as a mother as a friend and as a contributing member of society. Yet I kept going. Brushed my hair, and soldiered on. Plastered on the smile, built up the walls and told the world that I was fine, over and over agin until I started to believe it, until it started to be true.

Having my colon taken out was strangely liberating. Getting rid of that diseased organ gave me a chance of a fresh start. I embraced my Ostomy as it represented me getting my life back. The problem is, I haven't got my life back. I still have UC. I still bleed from my back passage. I still shit myself. I still have fatigue. I still have pain. I still have days where I feel like I am wading through mud, where everything is a struggle, where getting through the day in one piece, with my children fed and safe feels like a marathon. These days are far fewer than they were before the operation. The difference is 100% better, but my baseline before was minus 10 where  plus 1 is feeling like death and plus 10 is feeling totally healthy, so...... And the guilt. My god the guilt. This surgery was suposed to "cure"me. It was supposed to stop my loved ones from having to see me in pain, having to drop everything to help with the children, stop me from not being able to get out of bed, stop the pain, the bleeding, the accidents, the feelings of self loathing, worthlessness and zero confidence. So I fake it. Again and again. I get up, I get on with it. I put my big girl Ostomy pants on, brush my hair and live my life. I try not to complain, play the "sick card". Except now I have no more hair to brush.

A pile of dirty dishes

I find myself on the brink of yet another flare. For the past month the signs have been steadily building, starting with the crippling joint pain. In the past my joint pain was restricted to my left hip and wrist. This time every bone in my body seems to screaming in agony particularly in my hands. Perhaps it’s because we’ve had so much rain. Perhaps it’s because I’m getting old. Perhaps it’s because the UC is getting worse.Two months ago I started bleeding. I was put on Prenislone. After two days I felt amazing. Bleeding gone. Diarrhea halted. Urgency abated. Appetite back. A week later, I’m in a place I’ve never been. I can’t stand to be around anybody. I am disconnected from my children. I’m having panic attacks and suicidal thoughts. I have steroid induced psychosis. I immediately stop taking the roids, my Dr advises this over weaning as I hadn’t been on them that long. The withdrawal is horrific. I have gained 28lbs in 3 weeks, I am constantly lightheaded, nauseous, depressed, and frightened. It took me a month and a half to recover. A week later, the joint pain started….

I look around my tip of a house and realise I can’t go on like this for much longer. The dishes are piled high in the kitchen. There’s a basket of laundry that needs folding. My children’s bedroom is a mess. My bedroom floor has become my wardrobe. I am not fulfilling my role. Partly through not being able to physically, as I’m exhausted and partly because I am mentally and emotionally drained. It’s like a vicious circle. I know I need to do these jobs, the fear of discomfort stops me from doing anything. I get despondent. Nothing gets done.

So here I am, running to the toilet for the seventh time today, not seeing any blood but knowing it’s only a matter of time. Knowing that I will not take steroids ever again as I can’t put my family or myself through that again, but also knowing that if don’t I’ll end up in hospital again on steroids anyway and possibly with an emergency surgery.

I pray that I “get away with it” this time. That this is just a blip. I’m seeing my GI at the end of June – if I make it that long. He will be letting me know the outcome of a meeting he had with the surgical team about my case, as I discussed the possibility of an elective colectomy at my last appointment. I left that appointment wondering if I had been too hasty, if I should continue down the medical route – better the devil you know and all that. As I sit on the toilet writing this on the iPad I come to the conclusion that I may have reached the end of the road. Perhaps it’s time to let go, give in to the inevitable, have it out and be done with it.

Six years later

July 2002.

I am sleeping on the sofa in the living room as it is next to the bathroom. I have just had my first accident at 23 years old. Humiliated, I resolve to see my doctor in the morning as this food poisoning is out of control.

November 2003

I am signed off from my second job for two weeks as my wrists are killing me, and the wonderful folks at Amex are worried I have developed repetitive strain injury from using the computer. Full pay though, so I’m not complaining! I am napping during the day between jobs. This is normal right? I’m working long hours, of course I’m tired. And I guess it doesn’t help that I was up half the night on the toilet. I’m definatly allergic to prawns which is most annoying as I love them.

February 2004

I collapse as I’m walking to work. My hip just gives way on me. A stranger has to help me up. My wrists are sore and how I’ve managed to poison myself again is anybody’s guess!

September 2004

This is getting beyond a joke. I am sleeping more often than not. I’m pooing more than I sleep.

October 2004

I’ve just got home from holiday. Portugal for a friends 30th, then Dublin. What a bloody disaster. Portugal was great – 5 days of eating my body weight in seafood (I don’t care that I’m allergic, it was FABULOUS!) and drinking obscene amounts of alcohol. By the time I got to Dublin I felt like I was about to die. Not good, seeing as I was there to support my friend who was running the marathon. I am officially the worst friend ever, as I spent the entire time in the hotel asleep and pooing blood. Lots and lots of blood. I have spent a fortune on teary phone calls to my mum as I’m freaking out. Something is not right. Food poisoning does not do this to people. Neither does a hangover.

I see my doctor who fobs me off again, telling me it must be something I’ve eaten. I’ve had enough. Desperate times call for desperate measures. I make an emergency appointment, poo in a sandwich bag, and dump it on her desk as I enter the room stating “look at that and tell me it’s food poisoning!” To say she was disgusted is an understatement. She goes on to say “I’m sure it’s nothing to serious, it’s not like you’ve got cancer!” I’m flabbergasted. I run out of her office in tears. By the time I get home I shaking with rage. I write a letter to the practice manager, complaining about the way I was treated. A week later I receive an apology and an appointment with the Digestive Diseases department at the hospital for a colonoscopy.

January 2005

I have Ulcerative Colitis. Pan Colitis. Whatever that means.

February 8th 2011

I sit at my computer, writing this in a haze of confusion. This is because I have just got out of hospital. I have spent the past six years in denial and I have just woken up to the fact that I am living with a chronic illness.
My disease has never been controlled. This is mainly because I have not regularly taken my medication. I get to a point where my symptoms are under control and then I play Russian Roulette with my health, I stop my meds. Convince myself that I don’t need them. My symptoms are under control, I’m really not that unwell. I’m overweight (I’m not lucky enough to “suffer” from weight loss). Fast forward 3 months, I’m back on the steroids as I’m pooing blood 20 times a day. You would think that I would learn my lesson after the second or third time right? In this time I have had a child (lost 35 lbs whilst pregnant, silent flare?) been hospitalized whilst on holiday in America (thank god I had travel insurance), Ran my own restaurant, which was perfect as I could work around my disease, lost the business due to the recession, got a job then lost the job as I had a flare and couldn’t work. Signed off work and am now living off state benefits as I’m deemed not capable of working – m y how the mighty have fallen. I also manged to get myself knocked up again – it turns out the contraceptive pill doesn’t work when you’re having a flare, lost another 35lbs whilst pregnant, and had a terrible flare at the start of the pregnancy. Taking prednislone whilst pregnant was awful, worrying about the effects it might have on my baby but knowing that the benefits outweighed the risks. He’s perfect by the way.

Four weeks after he was born, I go into another flare. I’m literally running to the toilet with him attached to my boob. Three in the morning, my darling son on the bathroom floor, screaming with hunger, as I’m cleaning up the blood and poop. My four year old daughter wakes up, comes into the bathroom, bleary eyed, stating “Oh no mummy, not again.” and then takes herself back to bed. THIS IS NOT RIGHT.

I’m exclusively breast feeding and my son is constantly attached. He never seems satisfied. The health visitor comes to weigh him. He has dropped weight. “How is this possible, he is ALWAYS feeding?” Never for a second do I think that my disease is to blame.

I see my consultant and am put on 40mg of prednislone, reducing after a week. I finish week one. I’m still bleeding. I decide to call for advice as it seems silly to reduce. He tells me to come straight to the hospital. It should be working. They need to test my blood. I never for a second think I’ll be admitted.

Day 3 of intravenous steroids. They are not working. Sigmoidoscopy reveals severely damaged colon. I need surgery. WTF??? I feel fine.

A lifeline. Clinical trial of two drugs, Cyclosporin verses Infliximab (remecaid). They want to see the long term benefits of them. Which one I get is decided by computer. I have to stop breastfeeding at once. It is the only thing that might save my colon and there is no guarantee it will work. Am I in? The computer chooses Infliximab. We wait and see.

Day 7. My inflammation markers are steadily coming down. I’m not out of the woods yet but it’s looking hopeful.

Day 9. I feel TERRIBLE. Even though the bleeding has stopped, the frequency is dramatically reduced and the stool is forming, I feel worse than I did when I was admitted. Constantly tired, confused, metallic taste in my mouth, my legs don’t work, my head is foggy. It’s strange because my flare is under control.

Day 13. I can go home. Hospital has been such a positive experience. The girl in the bed next to me was admitted with a severe UC flare the week after I arrived. She was newly diagnosed. She was freaking out. I was there for her. Listened to her. Advised her. Became her friend. I am convinced that I was supposed to be there for her. Through her, I have finally accepted my diagnosis. I respect that I have a chronic illness. It has taken being separated from my children for me to wake up to the fact that I have to take this illness seriously. I have to look after myself or how the hell am I supposed to look after them? I still feel terrible. How I’ve managed to write this I don’t know. I’m glad that I did though.