Monday, 18 May 2020

IBD me

Not having an illness but still having an illness is a pain. Essentially all the negatives of having an illness are still there but I don't officially have an illness. Allow me to elaborate..

I was fat growing up. I know this as I was reminded often and we had a mirror. I am still extremely ashamed of my body. I do not take my shirt off and cant stand anyone making any comments about my body. I have shocking posture from stooping over in an attempt to cover up fatness. I moved away to study and I got thin.  I started drinking, partying, sleeping in, skiping classes through layiness and I got thin.

I got thin because I started crapping like a machine gun in a John Woo film (low BDQ). The result at uni was being tired, failing classes, freaking out about why I'm shitting for the olympics suddenly and then came the blood. Along with that came holidays and the comments from people back home about, looking great, deciding to shift the weight, good on me, keep going...

Diagnosed after a colonoscopy (a theme for the rest of my life) with Ulcerative Colitis. Get to keep the thin, drinking, partying etc just take these pills. That worked for 6 years or so until the day/year it stopped.  Which coincidentally seems to be why I havent been able to watch 'Breaking Bad'. I worked sick, shitting 25 times daily wil blood and mucus, going home to sleep on the couch, get up and play sport because exercise makes you thin and being thin makes you healthy right Cathy Freeman?

I worked and played until the day that I couldnt get up anymore so I had surgery. I had a bag. Life with a bag of shit attached to your waist is less than ideal. Im a recovering fat kit so I have no washboard abs to attach the bag to, I have a flabby spare tyre that sticks out at all the wrong angles to 'hide' the bag. I got to order special pants that..What is it with the people who design clothes for people with ostomy appliances? Do they all have a vision problem or is it mass delusion? The pants looked like one of the brothers from school who had his pants so high all you saw of the shirt he was wearing was the man cans poking out...so there's that.

"You wont have to live in the toilet anymore."
It shits constantly. No matter where you are and wht you're doing, you're shitting 24/7.  Bonus being you get to take it with you, everywhere. Sometimes you're out in your expensive ostomy pants and the contants of your bag make a guest appearance at the table. Sometimes I'd empty it at bedtime anly to find myself covered in a huge sweat in the middle of the night...that's not sweat. All stemming from me not being legit thin like I should be to get anywhere in life. "It's just your body shape."

Combined with the feeling of shit coming out of my flabby abdomen at all times of conscoiusness it farts on its own as well. I remember being at a school PD with members of head office and the presenter was laughing so much at the sounds it was making that I just left. I was a 27 year old man too afraid to go to a pd session on literacy like a damn school child.

I've written before about how garbage I am at basketball. Age is exascerbating the condition. I now dont have the mental skills for the game and the physical skills have already fucked off. There's no basketball with a 'bag'. What happens if it leaks from sweating? What happens if you fall over and it spills onto the court? I was a health risk to others so retirement.

The incentive of having a bag for me was not being in a box in the ground and that's it. I understand that for other's it gave them their life back but for me in my circumstances it didn't. It consigned my life to the graveyard anyway.

April 2010 and the bag came off. Now the 'cure' is in. I can live like normal but without a lot of things. Some easier to give up than others. Alcohol was an easy one but until you've been the guy who isnt drinking among a group who are and enjoying themselves its hard to not buy into the idea that giving up drinking wont cost friendships. It doesnt but I think I was dropped casually from the roster and filed under 'acquantanceships' instead.

Its not all bad, I did stay with my girlfriend who turned into a fiancee and then wife although I constantly feel a burden for her and my son. They miss out on stuff because of me. I remember trying to go without meds and using diet. Try eating a banana before every meal every day for a month. Then go on an interstate train ride with one toilet per carriage on that plan, it was awful.

I have to get a camera crew up my bum every 6-12 months. I tried going for 12 once but it was so painful we went back to 6 monthly. It's supposed to be done in the surgery, cold turkey. It was excruciating when I did it once and I could barely walk after, thanks Mr Turnbull, would love to see you give that a go. Now its a hospital thing. Im seven at seven months due to the zombie apocalypse and it will be eight once it happens barring incident.

This post is running out of steam. I had plenty of crap circling my head whilst out walking the dog but it seems to have escaped my at this juncture. I take Loperimide 2mg 1-12x daily. They stop me shitting my trousers at work. oh speaking of that I only buy dark pants now, people have not seemingly noticed 1. they make me look thinner and 2. they dont show the marks. But you can get by on not enough and frequent trips to the loo, but if you take too many you can get a blockage and that can rupture the pouch and then you'll have a bag again forever.

I woke up in my own shit once before a staff thing. It was around 3am and Mrs I.M was only just asleep as Baby I.M was new an didnt sleep. She'd just dozed off and I woke up thinking I needed to dash but too late, I was in a puddle. What are the steps in solving that problem? Wake up wife, go shower and hope she doesnt roll over? Wake her and everyone up to change the bedding? Nights like that are less frequent but just as shameful becuase even at 38, a healthy 38 year old does not shit themselves while they sleep.

Everything is planned around toilet breaks, going shopping, taking I.M Jnr to a playground, marking tme, agreeing to meetings, car trips, walking the dog, playing sports. But I'm cured. Oh the staff thing, it was about being grateful for my life. I had to write about how I had been blessed that day. I think I wrote something about a sense of humour. It's not a thing people talk about in the staff room, especially now that they're empty. I now have a rule that if you wake up in a puddle of shit, you should take the day.

All this stuff makes me feel like I can feel my time ticking away. I have things I want to do and my life (reportedly now shorter overall and in terms of my fit, healthy younger years) ticks away and I feel every second. When we go away and have family gatherings I'm quite antisocial as 1. not to be am imposition (my young, healthy charming self died 10 years ago) 2. I can feel the time ticking away. I hate sitting down and sleeping in. I get tired and sometimes sleep in but it feels like a missed opportunity. All this happens and I still hate my body. Cant do ab exercises as it may tear the pouch off the wall of the abdomen according to the surgeon. Im stuck in the skinny, ex fat kid, flabby body and I hate it so much.

I often think of my Dad's theory of winning a car (a school friend won a Mercedes Benz and my dad imparted this knowledge to me). If you buy a raffle ticket for a car and win; never service or repair a thing. Drive it until the wheels fall off and its on fire at the side of the road because it will be the cheapest car you ever owned.  I feel like that about my body. Just use it until it breaks. Pity I'm a coward and will eventually go to the doctor.

My cured body means I can do some of the things I like compared to having a bag and doing some of the other things that I like. Life isnt that same and never will be. I hate my body mainly because I never got healthy, I got thin and they aren't the same Cathy Freeman. The time just ticks away until it breaks again and I play along happily watching the clock run down and try to find something that I care about that I can actually believe I am good at.

Sometimes I think I've come a long way, and other days it feels like I've yet to sart healing. Maybe people with mental health concerns arent 'cured' but they have an understanding and the rational, cognitive tools to process things better. If that's the case then I am the former today. Feelings wise its the latter.

Happy World IBD Day

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