Once upon a time I…

In a previous post I spoke about The Fear of being stuck in public and desperately needing the toilet.

I very briefly touched on the times that my worst fear did indeed come true and I didn’t make it to the toilet in time.

When I wrote this blog, I promised to write about everything, the good, the bad and the not very pleasant and so, I am about to tell you about one of the times, that I unfortunately didn’t make it to the toilet.

I’m telling you this because you may have IBD and have also experienced this first hand, and it might help you to know that there are other people out there who it has happened to. Or you may not have IBD and by telling you this, you can begin to understand some of the debilitating things that happen to those of us with the disease.

I had spent the day out, no dramas. I can’t remember what I was doing that day, only that I had been out and about. Clearly if I had needed the toilet, there were ones within my reach and so I had no problems.

On the way back home I started to get the tale tale signs of needing the loo urgently and so I attempted, as best as I could, to try and get home quicker.

As some of you may know, doing the “butt clench” and trying to walk fast without looking like a penguin is damn near impossible.

Running, is also impossible.

The spasms, pain and rumbles were not just coming in waves now, it was one giant force that was wreaking havoc with my body.

I made it to my front door and lo and behold, I couldn’t find my keys. I was nearly in tears at this point.

Finally finding my keys, I somehow managed to get up the stairs. My powers of butt clench are outstanding and I made it into the bathroom.

I was shaking so badly from all the adrenaline that I couldn’t undo the button of my jeans and that’s when it happened.

I pooped my pants.

Immediately I burst into tears and ripped the jeans off me.

I can’t believe I was so freakin’ close to the toilet. As I scrubbed my jeans before I put them into the wash, waves of disgust came over me.

I’m 21 years old. How the hell can this happen to me?

IBD doesn’t care about your age. If you’re going to poop your pants, its going to happen, regardless of how old you are.

I was lucky that this time I wasn’t outside, or miles away from home and had to get back with soiled underwear.

Day to day living with this disease can be so tricky and its understandable that people stop going outside for long periods of time in case this happens to them.

But what can also be heartbreaking is that people don’t talk about this because lets face it, how the hell are you going to strike up a conversation about how you pooped yourself that day and you want to talk to someone because its really getting you down.

It’s just not going to happen. Having IBD can be such a lonely disease because we just don’t want people to know the intricate details of our lives, especially if they are embarrassing.

Unless of course you are me and clearly have no problem telling the world you have sh*t yourself.

Let it be known though that there are support groups out there, so if you are feeling down about it, reach out to people who know what you’re going through. You don’t have to talk to your friends and family, but at least try and talk to someone because its tough going through this. You have enough on your plate dealing with IBD, lets not welcome self hate or depression into the equation too.

If you do need someone to talk to, try calling NACC, the link I’ve posted is to their National Support Line. Don’t suffer in silence. There are people out there going/have been through what you’re experiencing. and its okay to reach out to them to let it all off your chest.

The Fear

Having IBD comes with many feelings and experiences. Most very unwanted, but they get chucked at us just the same.

The other day I was walking home from a nice relaxing walk with my friend at the beach, I was about 15 minutes away when my tummy started rumbling like a car starting its engine, I went pale and a little bit shakey, started to sweat a little bit and fear shot straight through me, turning my blood cold. Why?

I needed a toilet. I needed one desperately and there were none until I got home.

Don’t you just hate that feeling? That you need the toilet RIGHT NOW and there isn’t one in sight?

Your stomach is going absolutely mental, it kind of hits you in waves. One minute you’re okay and then the gurgling starts and the spasms and it builds and builds and then slowly passes. But they become more frequent.

“Oh my God, oh my God, I’m going to crap myself” is running through my mind and then the butt clenching starts. The amount of butt clenching I have had to do through my illness, you’d think I’d have an amazing butt wouldn’t you? But alas, frequent weight fluctuations has taken care of that one, thanks IBD, you’re awesome!

Its unfortunate that so many of us experience this toilet anxiety and I will admit that there have been a few times where I haven’t made it to the toilet in time. It can feel so humiliating and degrading when that happens. There is absolutely no comfort in the world for when it does, but you just have to accept it and move on the best you can.

The fear can cripple you if you let it. There were times where I was so nervous to go outside because I was worried that I wouldn’t be able to get to toilet if I needed it urgently and to be honest, I just didn’t want the hassle of worrying about it.

There is no magic cure for “The Fear”. I’m lucky that I don’t have many occasions where I wouldn’t make it to the toilet, but I have plenty of ones like the above where I would be so desperate for the loo.

Its one of the many issues that we go through, but as time goes on, it never gets easier as such but I do feel I have become more accepting of it.

It happens, I am a girl, well actually I should say woman, I’m nearly 25, who had IBD and this is unfortunately something I go through from time to time.

Do you have any tactics that help you cope with “The Fear?” Have you ever not done something because of “The Fear?

Poop.

I realised a few months ago that my friends and I talk about poo. A lot. It would be a different story I think if I didn’t have a bowel disease, and some up-tight friends. However my friends are so amazing and supportive, that when they ask about my problems they are quite happy to hear the gory details.
So much so that we end up swapping poo stories.
I even have some friends where we make a point of messaging each other when we are on the toilet!
In other circles of friends I have become somewhat of a poo guru.

I stand in a dimly lit room with incense burning, its quiet, a friend enters the room and kneels before me.
“Stephanie, I must confess,  I have very bad diarrhoea, its been this way for a few days now. I just can’t control it and I don’t know what to do”
“My child,” I say putting my hand on their shoulder
“Take this packet of loperamide, strip your diet back to plain chicken, white bread and mashed potato and you should see some significant improvements within the next 24 hours. Use this sachet of Dioralyte wisely, it will help replace some of those salts that you’ve lost, and my child, if it does not improve go and see a doctor”

Yeah. So what actually happens is my friend tells me she’s got the shits and I give her the above advice.

Poo is such a taboo subject. Nobody likes to talk about it, and though I don’t think we should go around telling every one who will listen about our bowel movements, if there was not such a stigma talking about the subject, perhaps young people like myself and others might not feel so embarrassed about having IBD.

Try as hard as I can not to let the toilet be a focus point in my life, I can’t avoid it because ultimately I spend a hell of a lot of time in there! The things I’ve learnt in that space of time are amazing, when I was in hospital in the weeks leading up to my surgery I learnt how to French braid my hair properly because I was just so bored.
Now, when I’m really stressed and need a bit of a time out I find I think best when I’m in the toilet.

I’m happy that I’m not still in the phase of my life where I would have to plan days out around toilet stops in case I ever found myself short. My JPouch is strong enough now to be enable me to hold on until I need to. I think that is what a lot of the self conscious embarrassment stems from. You can’t control when you have to do one of the most simplest acts of a human. To control when you go to the toilet.

I don’t expect people to willing go around having a conversation about how they have pooped that day, but if the stigma around the subject lessened a little bit, perhaps it could take a little pressure of those suffering from an already stressful disease.

Its an “Oh boy” moment

The extent of my fears pre IBD extended to forgetting my lines for a performance I was in; singing in public; worrying how I would get through the worst hangover of all time and trying to meet university deadlines.
Being diagnosed with IBD and my worries changed.
My top three are easily:
Oh my god there is no toilet roll in the facility and I don’t have any on me.
Oh my god there are heaps of people in the toilet and I seriously need to go; and my personal all time favourite.
Oh my God, there are no toilets.
My life whilst having IBD became about toilets. I’d plan days out and my first initial thoughts were “are there any toilets nearby?”
If I was out, I’d make mental notes of any toilets I had seen and whether they were secluded.
Pre IBD I would use public toilets for wee wee’s only. However, when the option is use the toilet or shit your pants, you get over the fear of going publicly preeettty quickly.
I particularly remember once when I was out and suddenly, with no warning, had the urgency to go. If you imagine a time where you are really ill, and the urgency you felt when you needed the bathroom, that’s the urgency I regularly experienced.
I sought out the nearest toilet, failing miserably. Panic flooded through me, I needed a toilet now or I was about to have a horrific accident.
An angelic spotlight has appeared accompanied by Godly music and I found a secluded toilet.
The relief that I’ve made it in time and that there were no people in the bathroom to hear the dramatic symphony that took place floods through my system
I reach for the toilet roll; my hand comes back empty
Hm.
I look around to see if there is any in sight.
It dawns on me; there is no toilet roll.
I start looking again, convinced I have missed it, though why I am looking upwards is beyond me, I just thought I’d check all bases.
I have done my business without checking to see if there is any loo roll.
I search my bag frantically.
Please something, anything.
Nothing.
Not even a receipt (which by the way I have also had to use when I had an incident with my stoma.)
I’m panicking now. Tiny beads of sweat have appeared on my brow and I feel uneasy.
And so my friends I made perhaps one of the most awkward decisions of my life.
I opened the cubicle door, pants round my ankles to see if there is any toilet roll in the next cubicle.
I made it without anyone barging in on my and seeing the sorry sight.
I breathe a huge sigh of relief and reach for the sacred paper about to grace my backside.
What?
No toilet roll in here either.
Shit, fuck, monkey balls.
I am in a major predicament.
I have a do or die moment. Pull up my trousers and pretend that the faint smell of poo is not coming from me, and if it is I must have stepped in dog shit.
Or, and this is a big or, somehow manage to wash myself in a public bathroom.
I’ve worked out I’ve been in here for about 15minutes by myself. The chances of someone else coming in are highly likely.
I decide to wait a few minutes whilst I make my decision and then someone comes in.
My thankfulness is audible.
Thank God/Allah/Buddah/Any holy figure, I didn’t go at that time.
I wait with baited breath hoping they will be quick. They are.
As the leave I decide I have to do this now and off I stumble, like a penguin to the sinks.
I can’t believe, at this moment of my life, at 21 years of age, I have my pants down and I am attempting to wash my arse in a basin.
Somehow I manage to do it, dry it AND no one came in to witness the sorry spectacle.
I won’t lie to you; I felt a mini sense of achievement and walked out the bathroom feeling like a ninja.
I know some of you reading this would have been like “why the hell did she do it?”
I have, in my time of having colitis, had only two dreadful accidents and a sprinkle of oopsies that can be covered up easily.
I know what it is like to go around for the day realising that something has happened and that you can’t control it.
I hate the feeling of wondering if people know something, that any sniff anyone would have done would send me running to the toilet, trying to sniff my own butt in an attempt to know how bad the smell is.
There were times where I could not control my bowel movements, rendering me helpless, making me feel ashamed and disgusted with myself.
If I can avoid that feeling, I will at all costs.
That my friends, is why I found myself washing my arse in a basin at the age of 21 in a public toilet.

Yawn

I am just so tired right now.
Why?
I am not sure.
Since I’ve started training all I want to do is sleep.
I’ve been running in the mornings which is making me seriously sleepy for work. I nap in the afternoons, emerging from the staff room angry that I am awake, sporting crazy hair and a beautiful couch mark across my cheek.
At first I put it down to my body not being used to running regularly but after my epic 6.5km I took a little break because my body was clearly like wtf? and I am still completely exhausted.
Today, for example, I slept 13 hours, albeit I did get up 4 times (irritable pouch) and I woke up feeling like I had  less than 6 hours sleep.
I am seriously lacking energy.

I have been off antibiotics for over a week now and surprise surprise my pouch is throwing a tantrum. The diet is hard to stick to but I am sure with my consultation in a few weeks it will get easier.

Irritable pouch. What is it? I am hearing a few of you ask, well it means I visit the sacred place (bathroom) perhaps 6-10 times a day and once at night if I’m lucky.
Food tends to go straight through me and I get intense spasms and cramps.

The frequency is not so much an issue,  I can handle going to the bathroom a lot, its the cramps I can’t take. Its the sort of stop-in-your-tracks-and-stay-completely-still-so-your-intestines-don’t-burst-out-of-your-body kind of cramps.

I have found that the more exercise I do, the less cramps I have. I haven’t a clue why!
I’m slowly figuring out what my pouch likes and what it doesn’t. Onions and crisps are on the Me No Likey list.

Anyway, I just thought I’d give a quick update as I’ve been quiet for a few days.
I’ll keep you all posted on whether this tiredness lets up.