The real world

I could be wrong, but I would believe that normal people after a three week stint in the hospital, complete with major operation, would go home and put their feet up. Maybe have a cuppa, watch a bit of TV.

I went down the road to the supermarket.

I wasn’t alone, I’m silly but I’m not stupid, there was no way I was going to be able to carry any food back with me.

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A guest post with the amazing Thaila Skye

After my first guest post for Me and IBD, Thaila added me on twitter. My word, I’m so glad she did.

This lady is such an inspiration, her Vlogs are fantastic, creative and informative. She’s a great advocate for IBD and raising awareness.

Thanks Thaila for agreeing to do this interview. I’m going to stop now because I’m gushing… Read on people, read on…

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You have to listen

Recently I spoke about how well I’m doing within my running but with the good, evidently comes the bad and I want to tell you about that too.

I was aiming for my longest run. So far the furthest I have gone is 4.51 miles, which is about 7k and my aim was to go just a little bit further.

Though the majority of my runs have been quite tiresome, I thought it was a reasonable goal. I’ve been getting a teeny bit faster with my 5k’s and thought a long distance run was in the cards.

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Keep on going

Motivation.

Noun
The reason or reasons one has for acting or behaving in a particular way.
The general desire or willingness of someone to do something.

What to do when this magical word evades you? I wish I had the answer. I’ve been a bit poorly recently, migraines, tummy pains and this weird thing where my arms and legs keep going numb/pins and needles.

A visit to the doctor is most definitely needed but when you’re a traveller with no stable address it can be a little tricky.

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Worst Night Ever.

When I came out of the anaesthetic, I remember trying to hard to stay awake, to fight the sleepiness thinking that if I did, maybe I could go and see my mum and she could make sense of what was happening here.

Once I had been wheeled in, I tried so hard to show her my stoma because I really wanted to see what it looked like. However,  I forgot that under the gown I was naked and in my enthusiasm, nearly flashed the ward my birthday suit.

Those first few days were so rough. I thought I had been exhausted when I had Ulcerative Colitis, but no, this was a different kettle of fish. On the first day, I managed to sit out of bed in the chair beside me whilst the nurse changed my sheets and bathed me. I was so tired I couldn’t keep my head up and the PICC line that was in my neck felt so heavy that my head kept lolling forward.

I had to re-learn so much, because I had been sliced and diced through my core, something as simple as getting out of bed was absolute agony. And scary. I’m a pansy when it comes to pain, I don’t want it, it can stay away thank you very much! So I would have to gear myself up to get out of bed because I didn’t want to be in pain.

And I was petrified to eat! After a few days of being on liquids they encourage you to eat and I just didn’t want to. I was so scared that something was going to get stuck, so every thing that passed my lips was a mini victory. My mum was going around to all her friends “Steph ate a spoonful of mash, today is a good day”

Also, on a slightly unrelated note, why the hell didn’t anyone tell me how freakin’ bad emptying that bag is? The first time it had to be emptied I gagged, which is not fun when you’ve been sliced and diced through the tummy, let me tell you! That first bag emptying, literally smelt like Satan’s Pit. What the frick died in there?

And showering. Sweet mother of God. My first shower by myself, I deserve a medal for that bad boy. I was so incredibly exhausted that I couldn’t stand so I sat in a chair, and I couldn’t lift my arms up for longer than two seconds. How the hell I managed to wash my hair that day remains a mystery. In fact, how I even managed the whole shower experience is a conundrum.

Slowly but surely, I was learning how to do things again. I was able to get out of bed occasionally, on my own, I had managed to walk to the toilet, even if I did look like Golum attached to a drip. Its hard standing up straight, it pulls and it felt like I was about to pop something. Anyway, slowly things were getting better, I was moved out of the bay near the nurses and my PICC like came out too. I was eating more as well.

I was making a great recovery and then the worst night of my life happened.

My small intestine had a hissy fit and said “This is just too much for me” and he fucked off.

Meaning, he stopped working. My abdomen ballooned, and the pain that I was in literally had me crying and I’m usually okay with pain. I suffer on through it but not this time. The doctor came in and he said “Blah blah blah back passage blah blah fluid blah blah relieve pressure”

I’m sure that’s not what he actually said but I was crying too much to hear him properly. The nurse rolled me over like a beached whale and the doctor put something up there to relieve some of the fluid that had accumulated and man did I scream.

My poor mum was in the corridor listening to her daughter in so much pain, it must have been so horrific for her because there was absolutely nothing she could do.

That night was absolutely awful, I asked a nurse to knock me out with something because I couldn’t handle the pain and I felt so bad because I was trying so hard to not make any noise because of the other patients on the ward but I couldn’t help it.

The next morning I was spewing, and it was awful! Eventually they fitted me with a lovely NG tube. Which is piece of plastic tube inserted through my nose, down my throat and into my stomach so they could empty the contents of my stomach. My, what a pleasant experience that was because your reaction is “GET IT THE FUCK OUT OF THERE” and you gag to stop it.

I spent the majority of the morning extremely groggy from the anti-sickness drugs that I was on and an amazing nurse stayed by my side, for most of the morning, holding my hand and making sure I was okay.

By the afternoon the pain had lessened and I was taken down for a CT scan to make sure that there was nothing too serious going on.

Luckily there wasn’t and it was explained to me that sometimes the small intestine unfortunately just stops working. It goes into a kind of shock because a) its been manhandled and b) its lost the large intestine so nothing was being digested and it was sitting in my stomach, hence why I had the pleasure of being sick.

After that little hiccup I went from strength to strength. I learnt how to successfully change my bag, which I will have a chat about in another blog post. I was eating, and moving around, not as Golum like as before but still quite hunched and in general, was just getting better.

I was so thankful to be let out of hospital because I desperately needed some sleep. It’s crazy how tired you become in there, all the poking and prodding, the noises of machines, the noise of other patients. A place where you have all the time to sleep and yet none of it feels like restorative sleep. I was forever waking up exhausted and I couldn’t wait to be in my own bed.

But then that alone brings a whole new set of problems! Now I had to learn how to do things on my own, and in the “real world” with out the support of the nurses.

Get In Touch

Why hello beautiful people!

I just wanted to put up a quick post to say hi.

Since being asked to write something for Me and IBD, which you can find here, I have had an amazing response from you guys!

Quite a lot of you have been emailing me and getting in touch via Twitter and Facebook and its been ah-maz-ing!

It’s so nice to connect with you all, to hear your stories and meet people in the same boat. I’d also like to give a massive thanks to any of you who have been reading but haven’t messaged me. I appreciate every single one of you, and the fact that you take the time out to read my rambles, makes me extremely happy.

BIG hugs to you all, with rainbows and glitter.

If you haven’t got in touch yet, I would love to hear from you. Any questions you have, or just to share your story, pop me an email.

Also, are there any topics that you would like me to cover in my blog? Or anything you’d like to see happen on here?

Get in contact with me, even if its just to say hi. You can email me, [email protected] or use the links above for my Twitter and Facebook.

Have a great day everyone!

 

Just blowing steam

I was doing my research rounds the other day, where I check out other blogs related to IBD, check out articles, that sort of thing and I came across a line that upset me a little bit.

The article was talking about research into the genetics of IBD and early detection, and in the piece it explained the difference between Crohns and Colitis, and the line that really caught my eye was this

“Although Crohns is incurable, surgery to remove an ulcerative colitis patient’s colon cures that disorder”

Now. Technically that is completely true. Colitis doesn’t effect anywhere else but the colon, so you take it out and you don’t have UC any more.

I “technically” don’t have colitis because I don’t have a colon.

But.

There’s always a but isn’t there. Man that big ol’ but just hanging around. God, you’re annoying Mr but.

I still bleed. I go to the bathroom 8+ a day, almost always wake up once in the night, I still occasionally have urgency and my stools are watery and never formed.

People without IBD are reading that that last paragraph like “Eurgh, too much info bro” people with IBD are nodding in understanding.

I’m not in the insane amount of pain that I was once in, I’m not on steroids but I do have the exact same symptoms that I had when I had UC just on a smaller scale.

I would not say that I was cured.

That line really effected me because it makes it seem that that if you have Colitis, its not that bad because we can just whip out your colon and you’ll be a-okay.

I know that some smartie pants reading this will say that its a different medical problem because it is now my Jpouch that is inflamed and so I have pouchitis.

Yes. This is very true but I am confused, for you see if Ulcerative Colitis is only in the colon, and my Jpouch is made up of my small intestine, why do I have the same symptoms? Why do I have inflammation of my pouch? What’s causing it if technically the colitis has been taken away?

I’m not upset at the article because they have given out false information because what was said is technically true.

I’m just upset because there are plenty of people out there, like myself who have/had UC, have had surgeries and are still in the same position as before.

We’re not cured, and it bloody sucks!

Deep down, I am frustrated that no one yet has been able to tell me why things aren’t quite working with my pouch and though I keep up a positive attitude, it does get to me.

Gah. I am just having a massive rant. Does anyone else feel like this sometimes? Or am I just being over sensitive?

A letter from my small intestine.

Dear Steph,

We haven’t exactly seen eye to eye recently have we? I’m hoping that this letter will explain some of my behaviour and then maybe we could get along a little better.

I really don’t appreciate the way that you talk about me. You’re so negative! Always on about how you’re fighting me and how hard it is to have a stoma and then how hard it is to have a J-pouch.

I didn’t want this! I didn’t ask for it! Sure, I knew that Colon was sick, I mean that’s why you had to keep putting us through all the medications but even though he was causing so much trouble, he was my friend. Why do you think I just stopped working when he was removed?

I didn’t even get a say in it, one day he’s there, the next there’s a white light and few hands fiddling with me and badabing-badboom I’m on the outside.

Like what the fuck? Seriously?

I know what you’re about to say “it wasn’t planned, I was just as upset as you were” but you have to realise it was a preeeetttyy big shock for me.

We’ve had our ups and downs, with the sore skin and the loud noises I would make, but I’d like to think that we became friends and that you had even grown to like me.

I was quite enjoying seeing all the sights, and meeting people. I was becoming quite a talking point in your life and then just as I was getting used to it, you put me back in!

Not only that, but you took a piece that was higher up and brought that outside. What? Was I not good enough for you?

It really hurt when I had to go back, but I got used it. It was lonely for a while, especially because I wasn’t connected to anything but those fiddly hands appeared again I was was back in the game.

Only this time, I had to do my job AND Colons job. I know I had to do it when I was on the outside the first time, but this was different. I had to learn to hold. Before, I could just spew when I wanted. It didn’t really matter, but now I go when you tell me to go and its just weird.

I know we’re still having problems, that there are foods that you can’t eat and you still have pains and bleed now and then. Trust me, when that happened the first time I was like WHAT THE FUCK? I mean, I haven’t dealt with this before, that was all Colon’s problem, so believe me when I say that I was just as upset and confused as you were.

I hope that one day we could be friends again, I’m still learning how to keep the fluid balance in check, again, Colon’s job.

But you have to meet me half way. It’s not nice to be fought against all the time, I’d like to feel some love rather than an obstacle that you have to face, some appreciation for all that I have been through over the years.

Remember that your diet and lifestyle is unique to you. I know its hard and sometimes you feel that you’re being held back by me but sometimes I kick up a fuss because I just want you to listen to me. Sometimes I can’t do the things that all your friends are doing because I just don’t have it in me.

Stand up and be proud of your uniqueness. Stop trying to blend in and be like everyone else.

Slowly but surely we are getting there and I hope in years to come we will be firm friends.

But for now, just give yourself a break, realise that you’ve been through a lot and its time to love the body that you have because its been through an immense amount in the past 3 years.

With Love

Your Small (and now also Large) Intestine.

 

Toilet related trauma

My previous post, Think before you speak seems to have gone done quite well so I’ve decided I would share some of my pet peeves that come with having IBD. I have heaps, so I will have to break them down into categories and today I bring you “Toilet related trauma”

No toilet roll.

This must be every IBD’ers nightmare. It has only happened to me once where I have realised I have no toilet roll in the house and no shop is open to get some. Luckily, I had some pocket tissues. Never making that mistake again. Ever.

Going to the toilet in public.

I hate it, but have had to get over my fear because its either that, or poop myself.

Going to the toilet in public and farting just as someone walks in.

Coast is clear, I can relax, do my business and BAM someone else is in the bathroom with me. Or what about when you’re going and you think “it won’t be so bad, I’ve done it before and no one has known” and then you let out the most gigantic fart of all time. Just me? Oh dear.

Or worse

Thinking you’re alone in the public bathroom, doing your business and then realising that you’re not.

God, a little piece of me dies when this happens and I instantly want the toilet to just eat me. They do the little cough that translates as “I’m extremely embarrassed that I can hear you but I’m not sure how to let you know so I’m going to cough and hope you realise you’re not alone” It never gets any easier using public toilets.

Someone walks into the cubicle you’ve just used.

RUN. RUN LIKE THE WIND!

I always want to apologise and say “I can’t help it, I have IBD” but hey, they’re not going to care, the only thing they’re concerned about is whether they’re making it out of the cubicle alive.

Going to a friends house and using the bathroom when someone is in the room next door.

This, right here, is the main reason I don’t stay overnight at peoples houses. I like to poop in peace. I need the bathroom a lot, and I usually wake up several times in the night and I don’t want to feel like I am waking any one else up.

I like to feel comfortable and unfortunately, staying at a friends makes me feel uneasy because as much as I talk about poop, and all of my friends know about my disease, I don’t like every one hearing me when I go.

I’ve had IBD for nearly 6 years now and the problems that pop up never really go away. I just learn to deal with them better, and for the most part, laugh about it.

What are some of your toilet related trauma’s? Do you have ways of coping with the embarrassment?