Lean on me

I am so  very lucky, so incredibly grateful that I have had so much support on my journey. The friends and family that have helped me through some rough times, have stuck by me through some horrible days.

It makes going through this a little bit easier when you know you have so many people that have your back.

However it’s not just from my friends or family that I have been supported by but also there have been strangers that have supported me.

When I was diagnosed, I thought there was something really wrong with me. How could I be 19 and get a bowel disease? Surely I should have got this when I was a bit older?

It wasn’t until I went to an education session that the hospital put on that I found that it could affect my age group. IBD doesn’t care how old you are, it can affect any age but you are most likely to be diagnosed between the ages of 15-30.

It was here I first met people who had the disease and it was such a relief to know that I was not alone. We spoke about all of our past experiences, what foods affect us, how we felt and I made a good friend out of it too, who I still keep in contact with till this day.

I didn’t reach out of the support group of my friends and family again until I had a stoma and the community I found saved my sanity.

My stoma nurse, who by the way, was an amazing lady who I will have to blog about at a later date, gave me this website www.iasupport.org.

There is only so much that your stoma nurse can help you with and the forum on IA support was legendary. There were people talking about their experiences with their stoma, others asked questions, some used it as a place to vent frustrations because sometimes it helps to talk to people who are going through the same thing as you.

I found the site so reassuring, so when TinTin had one of his dicky fits and I started to panic, I’d ask a question on the forum and would get advice from people who have experienced it themselves.

In the early stages of my loop ileostomy I found it so hard to empty the bag because it absolutely stank. Maybe it’s because the stoma is higher up in the intestine so more bile and acid gets through, I don’t know, but I do know that every time I had to empty it my eyes watered, I gagged and felt like I had unleashed hell within my toilet.

One quick post to the site and people gave me their suggestions on how they dealt with it, such a putting charcoal tablets in the bag or peppermint drops. In time it became easier to empty the bag, perhaps my intestine became used to the task that it now had thrust upon it, but there was a time when I opened the bag only dry heave so badly that I thought I was about to be sick which is never good when you’re on the toilet, where the hell will the sick go?!

Something that I took away from using the site is that I am not alone, that there are other people going through this too and sometimes their battle is far worse than mine.

The beautiful community at IA support really did help me and through meetings that IA run I found another great friend of mine.  It definitely made the experience of having a stoma easier, knowing that I could call upon some very knowledgeable people and get advice.

Sometimes it is hard to talk to people about what you’re going through but I do believe it is beneficial to have some kind of support system be it your friends and family, or if you feel uncomfortable talking to them, perhaps an outside community will make you feel more at ease.

Having to go through a stoma is hard enough to do by yourself, but please take comfort in the fact that you are not alone, that there are people out there that are going through this too and that their experiences can help you. One thing that I have noticed is that whether you have a stoma or a jpouch, have Crohns or Ulcerative Colitis, we all want to help each other. We all know how horrible it is and if our experiences can help others then we gladly share, even if they are horrific because we don’t want to see others suffer the way that we have.

We build these support systems around us to help get through rough times, but we also build them to help others, so that we can support them in their times of need.

So remember when you’re feeling low, and you’re having a “why me?” moment or a moment of sheer panic because your stoma is doing something it’s never done before, take a deep breath. Talk to someone about it, we’re all here to support each other through this.

Reaching An Understanding

Writing about my journey with UC, my last post was about invasive procedures, well, what happens once you’ve been diagnosed? What happens after?

I was given an insane amount of pills to take daily and I got better.  I stopped going to the toilet and I started to live my life again. I trusted that my gastroenterologist knew what he was doing and I put complete faith in him to make me better.

The steroids came in on their little horses and kicked Colitis’ butt. I imagine my large intestine to be like Lord of The Rings and there’s a little Gandalf steroid and he’s all like “YOU SHALL NOT PASS” to the colitis and BAM there’s a massive fight but in the end the medications are victorious.

Yeaaaaahhh.

Wasn’t quite like that because I ended up in hospital over Christmas.

I was back home in London during Christmas break from university and I was told that I had to get fit for the next production I was going to be in.  I went for a run, well I say run, I wasn’t a runner in those days, I just dabbled occasionally. I went around the block and came back home feeling pretty tired and run down. Thinking it was from my lack of running and it being absolutely freezing outside, I ran myself a hot bath and I ended up falling asleep in it as I felt so bad.

Taking myself to bed, I had chills, was sweating a ridiculous amount, and was up every half an hour to go to the toilet. My stools were like water and bloody.

I felt terrible and that night alone I had gone to the toilet 8 times.

By the time I had dragged myself to the hospital the next day I gone to the toilet over 15times.

I never thought that they would keep me in the hospital for a week. I thought maybe an overnight stay would happen because I had gone to the toilet so much and I needed my fluids to be replaced but I never thought it would be over Christmas.

At first I was lucky, ha, lucky to be in hospital you say? Well they had put me in the private ward because that was the only space for me. I had tv!!! I remember being super drugged out on pain meds and attempting to watch pans labyrinth for the first time.

BIG MISTAKE.

If there is any advice I can give you, anything that you will take away from these posts is do not watch pans labyrinth when on mood/mind altering medication.

I turned it off 20 minutes in and essentially slept under my covers because I was so freaked out.

The nurses still gave me hope that I would be out to enjoy Christmas at home and I was devastated when I found out this wasn’t the case.

I was moved to another ward because the one I was in was closing for the holidays. This was just a normal room, but had tiling on the walls and floor, it was cold and sterile. I wanted out. The head of the gastro department came to see me, a tall, thin ruthless man who was adamant that I was not to leave until he was convinced I was better. Telling me that surely my concern should be to get 100% well rather than leave early just for Christmas.

I wanted to scream at him. He doesn’t have UC, he doesn’t have to spend Christmas in the hospital, he gets to go home and spend it with his family. How is he meant to understand?

I found that I couldn’t leave because my potassium levels were seriously low and they had to be stable before the doctors would entertain my notion of leaving.

Christmas eve, 15 minutes before the clock struck 12 and it would be Christmas day. I rang my mum crying because I wanted to come home. I hated being attached to drips that beeped and kept me up all night, I hated being woken up so that I could have blood tests done or my temperature taken. How was I meant to rest and get better if I was constantly being poked and prodded?

That was the moment when I truly realised I had a disease that couldn’t be cured. A disease that will rob you of your happiness any chance it can get.

Colitis isn’t playing around. Colitis is a mean, nasty bully and once he has dug his claws into your gut, he is not letting go.

It sounds strange but I learnt to respect the disease because if I underestimated it, it would make me pay and it just wasn’t worth it. I had felt the wrath of Ulcerative Colitis and I wasn’t prepared to make the same mistake again.

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.

The cake is watching me

When I was given the hefty list of foods that I was not allowed on the fodmap diet, my first thoughts were “Oh my God no bread,” followed by “Oh my God no cake.”
I do enjoy a slice of cake. It is a common pass time of mine to catch up with a friend over a piece of cake and a cup of tea.
Sometimes I wonder why I am not the size of a house, and then I realise that it’s because I poo everything out at an alarming rate. Did you know that for a normal person 
Being on this diet I have found out many things. Mainly, how utterly appalling my self control is.
I know I’m not meant to have that piece of cake. That glorious piece of cake that is staring me down singing “you know you want me” and dancing in a seductive way with a fork, is on the “Not allowed list” It has wheat, and most importantly an epic amount of sugar in it.
Yet I am there, five minutes later, feeling guilty that I shoved that piece of cake into my mouth and I damn well enjoyed it.
However my J Pouch is not impressed. I have learnt the hard way that on top of the fodmap diet no no’s, sugar is out.
I always thought that wheat would be my biggest problem to cut but in fact its sugar. It is everywhere and I never realised I how much I had until I tried to cut it out.
It’s everywhere and trying to exclude it is so hard. So far I have only managed 4 days tops to exclude it and then I cave.
I managed to last nearly 2 weeks without wheat and all the other crazy no no’s and I got really upset and everything went out the window.
Being on the fodmap diet I have learnt that if I want to eat I have to take lunch with me. There are very limited foods I can pick up on the go and in a rush.
Even though I know that this diet is what could be the key from keeping me off antibiotics I am finding it difficult to stick to it. Having UC, the ops and now all the problems with the J Pouch, I have adopted the Fuck It mentality. I have missed out on so much and my illness prevents me from doing so many things that I do end up eating things that I shouldn’t. Why can’t I eat that piece of cake? UC has robbed me of so many things so why can’t I eat the cake just like everyone else.
I have been doing a lot of research recently regarding diet and Jpouch and have found some interesting information regarding UC and diet.
When I was diagnosed one of the first things I asked was “Should I change my diet?” I was told that I should be fine, and that when I am in remission that I can eat what I want and to just “listen to my body” when I am in a flare and not eat too many fruits and vegetables.
IBD takes the “one size fits all” and stamps all over it. It’s different for so many people; no wonder the doctors don’t recommend you start cutting certain foods out because what will flare me won’t flare you.
I wish they had recommend trying different diets, or at least planted the seed of researching different foods that could aggravate my UC. Especially now I am having the same symptoms I had with my UC except without an intestine.  
I hope that the gastroenterologists are starting to seek alternatives, to realise that though it is completely necessary to control the flare, that there could be an underlying problem that diet could help to address.
I hope that people with IBD see this blog and decide to do some research on what works for them. Sometimes doctors are so focused on getting the flare under control they don’t consider any other alternatives than those dreaded steroids, when a few changes in diet could relieve a lot of pain that some of us IBD sufferers have.
In the mean time I’m going to try harder to stick to this diet. What’s the point of preaching to everyone if I don’t heed my own advice?!
So Mr Cake, you and I will cross paths occasionally, I only ask that you stop doing that sexy dance with the fork because it makes me want you just that little bit more!

Invasive procedures

I have had many people stick things up my bum.
You never forget the first.

I was in Bournemouth at the time and luck have it had a female doctor. 
For some reason it never occurred to me that having bowel trouble the doctor might want to see my bum so when she said “I’m going to give you a rectal examination” I giggled nervously, then stopped when she couldn’t meet my eye and I realised she wasn’t joking.
Sensing that I was nervous she asked me to hop on the bed, pull my pants down, lie on my left side and pull my knees up to my chest.
I was staring at the wall trying to think of anything but what was about to happen.
“Okay Stephanie, just relax”
“Shopping, erm I need to get milk, bread, eggs HOLY COW HER FINGERS ARE UP MY ARSE”
And then it was over.

I’ve had many more examinations since then, and they have all been by men. It has never really bothered me because I’ve always been so ill at the time that I couldn’t care less what was stuck up my anal canal and who by.
However, I will say, when your doctor is extremely hot, then it becomes an issue.

 Just before I had my stoma and I was in hospital for 2 weeks, I was visited by many doctors and surgeons. More so surgeons, as if they were trying to prepare me for what was happening. That, and the fact that I was in a lot of hospital discussions and I’m sure many doctors wanted to see what was happening. I had been the youngest patient they had who was about to have an ileostomy due to UC.

 I was sitting on my bed reading Elle. My skin at the time had become a tired with grey, yellow tinge. I was bloated and puffy from being pumped with medications and all my arms were covered in black bruises from too many blood tests.
In walks a surgeon so good looking he looked like a prince from a disney movie.
I was so speechless I didn’t realise he had introduced himself and was waiting for me to go over the gory details of how many times I was going to the toilet and the consistency of my poo.
As if that wasn’t bad enough, when he said he’d like to take a look I almost refused.
Bowel doctors should not be good looking. Ever.

A sigmoidoscopy is where a camera is put up the anal canal to see the first part of your colon. My first examination was not as intense as I thought, but that was because I was in remission at the time and so the most shocking thing was actually being able to see your insides.
However to see the extent of my illness I had to have a colonoscopy. That my friends rendered me to tears and I was screaming “give me sedation”. I was in full flare at the time and your bowel is not straight so you have to be moved around the table so the camera can go round the bends. I had to get a nurse to help me because the pain I was experiencing was unreal. They have to put air into your colon to open it up so they can see. I can hazily remember looking at the screen and seeing ulcers all the way through and when they took a biopsy it bled profusely.
The biopsy process is a little mind boggling and the only way to describe it is this little mechanic arm that shoots out opens, then closes shut and taking a piece of your bowel with it. Mental.

With every procedure I have, I am still not prepared for when doctors wipe my bum. Yes, they have to because lube is used, could you imagine a dry finger up your bum? No thanks, you have to make that procedure as comfortable as possible. the first time a doctor did that to me he patted my backside after, almost like a father does to his child. The only doctor that has ever done that is my surgeon, and as I trust him with my life, a little bottom pat is allowed from The Great One.

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.

The Beginning

I have never spoken to people about my journey with Colitis. Burying the horrid details is how I coped. I was dealt a nasty hand and I played the game with what I had.
For me to raise awareness about this disease I need to unearth some horrible events that have happened in my life.
Now it’s not going to be pretty and some of you may feel that I am a) unearthing some horrible details that should remain private; b) that the details are a little too gross for causal reading.
Let’s just get some things straight, for people to understand how devastating this disease is you need to know the gory details.
For other people who suffer with IBD, they need to be aware that there are people out there who are going through some rough times and it’s perfectly okay to feel like your whole world is unravelling at your feet. So yes, these posts will be a little heartfelt and a touch graphic, but if you would prefer not to read, then that is your own choice.
It took me a while to realise something was wrong. First it started with mild cramps and occasional nausea when I ate.
I thought it was down to stress; I had been working on a new project at university and was pulling 12hour days, then going out drinking afterwards.
Then I got this bizarre feeling where I urgently needed the bathroom but then nothing would happen.
Even when I noticed blood in the toilet, I still ignored it.
It wasn’t until I went to the bathroom one day to find the only thing in the toilet was blood that I thought I should get myself checked out.
Low and behold, the only way to check out any problems with your backside is indeed, to check the backside.
April 2008 was the first of many, many rectal examinations. I am now immune to any exams in the below region, though I do believe that I should get a lollipop for my efforts.
After being forwarded to the gastro team, we spoke about what it could be, his suspicions were IBD but we would have to make sure whether it was Crohns or Colitis and the only way to check is a sigmoidoscopy (camera up le bum)
I was coping with everything pretty well, the urgency was getting a little worse but nothing major and I hadn’t lost too much weight.
The bleeding however was getting worse and I was feeling very exhausted.
One afternoon after a particularly troublesome day I found I was passing huge clots of blood, like 50pence pieces and bleeding very heavily. Confused as to what was happening, I walked to the sofa and curled up into a ball. Having no one to rely on at university I was feeling very scared at this point.
I called my mum and she told me to go to a&e, tears streaming down my face I said I didn’t want to go without her. Being a relatively healthy child/teenager I’d only gone to the hospital a handful of times and even then it was with the support of my mum by my side.
My housemate took me and I was so grateful, she sat with me the whole time and even came with me when I had my examination.
First housemate to see a little bit more of me than she intended and on a completely sober basis as well.
I never really said thank you to her properly. It was a small gesture but to me a great one. I have no idea how I would be able to cope if I was by myself.
The Dr had his suspicions that it was Colitis and sent me away with a cocktail of medications. Steroids, pills to help cramps, tablets to help the acid imbalance, Mesalazine to help reduce inflammation. I was on, if memory serves me correctly, 24-28 tablets a day in my early stages.
This all happened before I was properly diagnosed; I will share with you the lovely details of my first sigmoidoscopy in another post.
I still hadn’t told many people what was going on, especially as I didn’t think it was a major deal. Something that I would have and perhaps go away with time.
I didn’t realise that the only way to cure colitis is to take the large intestine out. I was still quite naïve in my thinking, as you are at that age, believing that you are invincible.
I used to take my health for granted, something you think you will always have.
April 2008 was the beginning of a long journey, nearly 4 years on and I am still trying to get onto a path that will lead me back to a pain and med-free state of health.

The Method To The Madness

Over the past week I have been asked this question several times
“Why are you running a half marathon if you hate to run”

My response has been “I have no idea”

I took the time out to sit and actually think why am I doing something I really hate? Why could I not have raised money doing something I enjoyed?

I have always been a very active person. In school I would play netball, football, tennis, looked forward to sports days and what with being a hyperactive person, I was always on the move. University came and though I was never on any teams, I was studying acting and so was on a very physical course.

I love to be active.
Colitis slowly stopped me from being as active as I liked. I couldn’t exercise for long periods of time because I was tired constantly. When things were really bad I couldn’t even go for walks for fear of having some sort of accident. (Yes people, I do mean of the pant soiling kind)

When I had my operation, it took me three months to recover and be able to do a few shifts at work, let alone start any exercise.

The moment where I decided to run was after my second operation. It was partly inspiration from a friend of mine, Candice. I had seen her journey unfold, which by the way you should all check out here http://thetortoisewithnohair.com
and read the amazing journey about a girl who is running the world for Avert(ing) HIVand AIDS

And partly because I had been so sick of not being able to move. I wanted to make my body stronger. It had been through much and still had another operation to go. I wanted to take care of it.
I had no money to spare to go swimming or buy any work out dvds so I started to run.
I hated it (as you are all aware from my previous post) but I would get better with every run that I did and I slowly got addicted to the feeling of adrenalin kicking in when I realised I’d beat my PB. Addicted to the might rush of those feel good hormones rushing around my brain, making me love life and anyone I came across! Addicted to the fact that after a good, hard, long run, I would sleep like a baby.

I chose to run for my charity because doing a sky dive or bungy jump is something I really want to do. Its not a challenge for me and therefore not an achievement.
I won’t grow as a person from doing a sky dive, I mean sure I’ll have an awesome memory of it but I intend to do it when I go travelling.
Running is an epic challenge for me, it teaches me things I didn’t know about myself and it will continue to teach me because this mind of mine is going to have to be shown who’s boss at some point.

When I run this race in September I won’t be the same person who is writing this blog. I have a lot of learning to do, a lot of hard graft to get through and some revelations to share.
With this run I know that I will have put my everything into this. Raising awareness for Crohns and Colitis is something that means a lot to me. I want to reach as many people as possible with this fundraising so that those suffering know that they are not alone. Most importantly they don’t have to go through this disease alone.

Sure, I’m a little bit crazy for deciding to do something I hate, where I will spend hours every week clocking up miles, where I will have to most probably cancel dinner dates and catch up sessions in favour of training. But this run will just highlight the fact that I can do anything I set my mind to regardless of what I have been though. I hope that people with IBD can take something away from my journey and feel just a little bit better about their own. I can’t inspire people by just doing a sky dive.
I have to earn the right to be inspirational.