by - February 11, 2018

This is a long one, but please stick it out!

December 2016

I meet Dr Stoner, shake hands, I reel off my list of symptoms - weight loss, fatigue, no appetite, pooing 30-40 times a day and no sleep because of it, watery poo with lots of mucus, brain fog, joint pain, cramps, mouth ulcers/thrush - there may be more but I can’t even remember. He tells me it definitely sounds like IBD - most likely Colitis and we arrange a sigmoidoscopy.

A sigmoidoscopy is a camera inserted into the rectum that sees your lower colon. It’s less invasive than a colonoscopy which shows all of your colon. Yummy. It sounds routine and easy. I book in for January and he prescribed me some steroids - 30mg prednisolone and to taper down by 5mg each week and to see him after the sigmoidoscopy. (I may see him in between, I can’t quite remember, actually most of this I’m not too sure if the order so bear with me.)

Now I read up about any meds I’m given - reading through the leaflets in the packet and researching online myself too. The side effects sound horrendous: weight gain, moon face, indigestion, insomnia, sweating, fever, bad headaches, Cushing’s disease, mood swings, muscle pain, joint pain, anxiety, irregular heartbeat - I’m sure there’s more. I read horror stories but begin them. My appetite instantly increases which I’m thankful for, I’m around 6st at this point and I can see every rib, front and back, my chest and collarbones protrude grotesquely. I’ve never felt so ugly and cry a lot about it. I suffer insomnia and night sweats anyway, it does get worse but it’s not the worst thing ever. Indigestion definitely happens so I get prescribed omeprezole by my GP. I don’t really suffer many side effects and although everyone else HATES the weight gain, increased appetite and moon face, I’m so happy with it. I need it. My joint pain does increase so I’m prescribed some calcichew - calcium with vitamin d, it tastes like oranges and I just wanna eat them all.

Dr Stoner also asked for a stool sample and blood test. Stool sample, no problem, a blood test however? Erm. At this point, I’m 26 (and a half) and I have NEVER had a blood test. I’m terrified. Most doctors look at my tattoos and then say it’s silly I can have so many tattoos but be afraid of needles and injections. I was about to roll my eyes but he didn’t say anything in a judgey way, but in a jokey way and tells me it’s not a problem, we can work on it. I AM SHOOKETH. This man is great.

I do the poop sample and get the results which show lots of inflammation and that’s no surprise.

The sigmoidoscopy rolls around in January 2017 and basically, I get there, the nurse starts an enema to flush me out so the camera can get a good look. Problem is I get into the theatre room and start having a panic attack before I even sit down. A bint of a nurse keeps telling me to calm down and breathe - not what I need. I can barely see, I’m taking short and sharp breaths and can feel my rage starting (panic attacks manifest differently in people and mine vary a lot personally). I say I can’t do it and hazily walk out of the room to try and get my stuff, I nearly collapse. 

A few minutes later, Dr Stoner comes by my bed and asks me what happened, apologises that I suffered a panic attack and asks if I want to try again. I decline and apologise for wasting everyone’s time and he asks me to come back a week later. I do so. I see him roughly every 6 weeks to see how I’m doing with the pred. At some point he prescribes me asacol (possibly around May 2017) which doesn’t do much after a few months, we try pentasa which ends up with a trip to A&E, albeit a fruitless one so I won't bore you with the details but I was really very poorly. It's around this time I start to develop an abscess in my butt cheek, as well as something else I'm yet to learn about and don't realise I have them; a fistula.

I'm struggling very much with my anxiety and depression, I'm at a point where I do not want to be alive and can't see any end to this suffering.

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  1. Ouchy. Sounds recent..

    I started with pentasa too at first, but it's a drug that loses efficiency in time, after that i had to use azathioprine,

    which after 2 weeks led to excessive vomiting for days straight and swollen intestines, stomach and pancreas, i got hospitalised for 4 days, and couldn't do shit for another week.

    If u can, get some entocort, it made my cramps and everything fade right away (9mg) though it merely supresses it (not healing), as i'm on anti-tnf therapy, which takes a while to kick in.

    1. Pentasa made me so ill straight away.

      I'm currently just on pred and awaiting to hear back from my new gastro team regarding best treatment going forward - whether it's surgery or biologics.