Ileostomy Issues

I thought I'd actually write a SERIOUS post, what? I know right.

I wanna write (type) about the issues we have or complications we can develop with having an ileostomy.

My day today has spurred this topic on and got my mind whirring because all day I have wanted to... HAVE A SHIT.

Out of my butt. Yep.

It's not possible, my colon has gone (c'ya u useless moron) and my rectum is stapled down. So basically this experience is called 'Phantom Rectum' - (sounds spooky and makes me wanna listen to Ghost).

It's not very pleasant for me, I feel so agitated; I have to sit on the toilet and wait for it to pass.. There have been a few times where I haven't been able to, so shift around looking like I need a wee. I also get rectal discharge which is oh so lovely and I'm sure you all wanna know haha but fuck it, you're gunna- 

Rectal Discharge is a delightful thing which tends to happen to me every couple months, I guess because my rectum is still there the mucus just builds up and has to evacuate somehow... it sometimes hurts me but generally it's just uncomfortable :(

Another thing that I am concerned about- Vitamin B12 Deficiency.

Vit B12 is pretty important as it keeps your brain and nervous system healthy. 

Your large intestine absorbs vitamin B12 from the food you eat- WELL, I don't have one of these useful things in my body, shame really because it seems to be pretty important.

So basically if your B12 levels fall you can develop Vitamin B12 anaemia, wonderful! Another thing you want to add to your list of body fuck ups, wahoo!

If it's not treated it can affect your nervous system- i.e. memory loss etc. 

I do take supplements though, but I forget a lot of the time (memory loss already? ha)

The things I have posted about aren't things that my doctors told me; nothing about the above was even mentioned to me. The first time I had rectal discharge I thought I was dying and I was gunna poop out my rectum! It was only after speaking to my friend Skinny Pete (not of Breaking Bad fame) who had a colostomy, he informed me this was normal and it was never mentioned to him either.

The B12 issue was something I came across online, so yeah thanks again docs and nurses you scared the shit (lol) out of us all for not telling us poor people!

Thanks for reading my ramblings!

xo

Seeing as I mentioned Ghost in this post, have a song by them-

The day my guts exploded. literally.

Well, my large intestine anyway...

So this is my wicked diagram of what my large (or lack of) intestine looks like now.. not a whole lot going on to be fair. As you can see, I only have my rectum left, which my surgeon informed me is STAPLED DOWN.

I don't really know where to start with my illness; people assume that because I have the bag it means I must have Crohns, UC or any other kind of IBD but I don't, I had a 'useless intestine' which is what the doctors even said, after months of them trying to figure out what was wrong with me and why the hell I was even in this situation. They thought at first I had Hirchsprungs which had been dormant for years, but turns out I didn't. 

Hospital round one. August 2009
As long as I can remember I have always had tummy troubles. The dreaded feeling of either having constipation or diarrhoea all the time really was draining. I don't think there was ever a long period of time where I had a 'normal' bowel movement.
Me being me, ignored it a lot of the time. The docs put it down to irritable bowel, however bloody annoying it was it was NOT irritable bowel. They gave me tablets for it, which obviously did fuck all.. I was about 15 at this point? 

Let's fast forward five years.. okay, 20 years old - I damaged my spine lifting a HEAVY AS FUCK chair haha yes okay, ridiculous but I did!! A couple weeks later my legs kept going numb as I walked, hmmm odd I thought, what did I do? IGNORED. obviously.

A week or so after that I was at home one day and I needed a wee (remember at this point I was still having constipation/diarrhoea week after week) but I couldn't go; my bladder was so full but I just couldn't go- this is when I go to the doctors, yeah. Doc sends me off to A&E, they do a load of tests etc, (oh yeah during this point I have HORRENDOUS diarrhoea so yeah I can't piss but I can indeed poo everywhere, typical). xrays and all that, turns out I have spinal inflammation disease which has affected my nerves and my ability to wee, they put a catheter in, which really was a lovelyyyy sense of relief! 

I was in hospital for a week, feeling terrible, pooing and weeing here there and everywhere. The most ridiculous thing was I had to wear one of those tena lady nappies as I couldn't walk so was bedridden and pooping like a giant baby.

(I don't even care how disgusting and embarassing this is, this is what happened. I ain't sugar coating nuffin!)

Basically that was my first time in hospital and the doctors seem to think there is a link with that and what happened to me, with having a bag and everything.

Hospital round two. January 2010

Yeah this was the worst hospital experience of my entire life.

I'm most probably gunna be a rambling mess, a lot of these events were quite hazy to me as I was doped up on morphine a lot of the time but I shall do my best to explain!

A couple days after my 21st birthday I woke up with a swollen tummy, I looked like a starving child.. I couldn't move, was in horrendous pain and again, I couldn't wee! joy..

I rang my dad in hysterics, he had to come and get me and take me to A&E (we were there for 5 hours with me screaming like a wounded animal). 

From what I remember I was examined and I got put in CDU for a couple days, they tried to give me laxatives and stuff, which did fuck all. OH YEAH, they also wouldn't let me eat. I went 10 days without food; during this time I was moved to another ward, getting more and more exhausted. I think they also tried enemas on me, they didn't work. I remember having horrendous acid reflux and one night I vomited everywhere, they sent me for an emergency xray.. I remember this quite well, I was led there looking at the sea creatures painted on the wall, that was nice.

I'm pretty sure it was after that they explained to me that they were gunna open me up to see what was going on, I don't ever remember feeling scared - in all honesty I think I was too tired to even feel anything. 

On the 14th (I think) January I had major surgery. I died on the operating table and was in ICU for a week, I wasn't with it much but my Dad has told me quite a bit about it all.

Then I woke up with the bag. DUN DUN DUUUUUNNN