Hi, I’m Ally
I’m a newly diagnosed Colitis (IBD) sufferer and I couldn’t be more happy or confused. (I’m sure you’re confused at the happy part) please prepare to read the most boring or potentially informative blog of your life! You’re welcome…
Where shall I start? Maybe the early morning wake up on a Sunday to get myself to the hospital for a colonoscopy. I was tired, scared and I had no idea what was ahead of me. I’d read all there was to read online about the procedure (note to self: stop googling symptoms and medical procedures you anxiety ridden maniac) and all that seemed to fire up across the page were horror filled reviews on pain, bleeding and bad drugs. Anyway, back to Sunday morning around 7am – I’m sat there in my new-for-hospital nightie with a few other nervous (properly dressed, how embarrassing) individuals waiting for our names to be called. I was eventually taken to a small private cornered off section of the ward and given a blanket and recliner chair (sleep – finally!) asked some questions by a lovely nurse – such as my allergies, if I take Buscopan and if I wanted gas and air or sedation for my procedure. I had chosen gas and air, mainly for my phobia of needles and the possibility of a reaction to the sedation (in case you haven’t gathered by now – I suffer from severe and at times crippling anxiety which also leads to me being a huge hypochondriac) the nurse advised she could still add the cannula incase I change my mind mid procedure – very reassuring – but I opted out, she almost seemed impressed ha!
Anyway, after all the questions and discussions I was left to my own devices – in a recliner chair with a blanket snoozing away. Eventually after a couple of hours of constant battles in my own head (the double doors which lead into the corridor and eventually freedom were looking appealing as each minute ticked by) and some thoughts on how I’d feel depending on the outcomes and whether this could affect my life, I was called to theatre. I was escorted there by a lovely old chap called Graham, he was very reassuring and I felt brave and confident as I approached the dreaded lights at the end of the tunnel (theatre) I’ve never been in a theatre before, of the medical variety anyway and the cleanliness and bright white lights just felt like something from an alien autopsy movie. I nervously kicked off my slippers, lay on the bed as instructed and my new mate Graham talks over how to start with the gas and air. After a few deep inhales I was talking absolute nonsense and my face felt like I was the pilsbury dough boy – which Graham advised was a good sign to start the procedure.
Initially, I didn’t feel the camera going in – I’d had that much jelly on ‘the area’ (I don’t think the doctors like to say Lube to a young lady such as myself) it went in like a charm anyway (no judgements here this mans had his hands inside of me) and it all started. At first I wasn’t too overwhelmed, they let me watch on the screen and the lovely nurses in there were chatting away to me to comfort me which was great. However, as they got further and further up it obviously became more painful – not a sharp pain or ‘like knives’ as other people had described, just discomfort like a pushing sensation and a bad case of gas. The worst part was probably when the Doctor filled my colon with air and asked the nurse to push down, I have to admit I let out a little cry. Anyway the Doctor kept snaking round my colon, from the large into the small – he even let me say “Hi” to my appendix (cute). As he went along it was so interesting to watch, he seemed to be sucking out any of the waste left in me after my klean prep the day before (don’t even get me started on that poison, that’s 100% the worst part of the whole procedure please ensure you prepare yourself for the fresh hell thats going to grace your taste buds no matter how much juice you add) and jet washing as he went along. I was advised that women pay a lot of money for this treatment – said women must be mad! Anyway, I’m making it more dramatic that it needs to be, after sucking on the gas and air like a shisha through any rough bits and chatting rubbish to the people in the theatre, they slowly started pulling back out and the procedure was nearly over. I had 12 biopsies taken on the way out, at first I thought they were stapling me, it looked like crocodile clips on the end of a long cord and was amazing to watch. These didn’t hurt prior to contrary belief, just a slight tug and a bit of cringing about it afterwards (I kept getting flashbacks – post biopsy stress) and finally – it was over! I meant to mention I was diagnosed pretty much immediately, which made me question if I needed the procedure at all, unfortunately I did – I have Colitis, which in all honesty looked like a bad case of tonsillitis in the colon walls.
At first, I wasn’t too sure about what this all meant, I was wheeled back to my booth and sat back in my chair (on a pad thank god – they fill you with that much air that when it’s released it feels like you’re deflating / potentially going to soil yourself) where I had a hot chocolate and a biscuit – delicious after almost 48hrs of no food! I asked the nurse a couple of questions and she gave any answers she could and I was prescribed a course of steroids for two weeks in hope it’ll put my symptoms into remission. I’m yet to start the steroids as the chemist aren’t the quickest but I’ll let you know how I get on with them. I asked about the side effects (again, anxiety and I annoy myself so much) , weight gain and nausea appears to be the worst amongst them. After hours and hours of researching colitis and trying to find some reasoning and ways in which to deal with my newly diagnosed condition I’ve given up. Nothing seems to be set in stone and the vague information surrounding it isn’t satisfactory so I thought if I start a bit of an online diary, depicting any highs or lows that seem to come with the condition it may be useful to anyone out there going through the same thing. As they say, a problem shared is a problem halved…..
How It Came About.
I started having stomach issues late 2015, I’d been on holiday and thought my funny tummy was due to either some not-so-fine Spanish Cuisine or just the amount of alcohol I’d poured down me at a festival I attended abroad. It didn’t clear up for a while and I took some lactose (you can imagine what the issue I was having was) and it did its job. I never got back to normal after that however, I would like to say this started alarm bells in my head but in all honesty I was too busy to make anything of it. After a while my stomach became painful and I wasn’t actually managing to get to the loo more than once a week so I decided to see the doctor. They diagnosed me as having IBS and gave me a life sentence of Macrogol – I gave the Macrogol a chance and after a while I felt that my mind was tricking me into thinking these were working and they were serving more as a placebo to buy my silence from the doctor. I returned again and again with the same diagnosis constantly, I even dialled 111 one day when I had managed to get to the loo and I was in so much agony I sat there wondering if I was one of those idiots who had a baby in the loo and didn’t know they were pregnant until that moment. I saw an OOH doctor and guess what? Same diagnosis again.
Not Avin’ It.
Anyway, late last year I started to get pain beyond what I’d had before – I was having dizzy spells and I was constantly tired and just never felt 100% well. My appetite went, I started to lose weight and I just generally started to become a bit of a shell of myself. As I’ve said I suffer from severe anxiety and in the past it’s lead to feelings of surrealism, going about my daily life feeing like I was coasting along like a ghost and not actually living the moments I was in. However the dizzy spells etc I’d experienced late last year during my darker times (lol – if you can’t laugh at yourself then what’s the point) weren’t the same as that. I began to feel a bit frail and just generally weak both in mind and body. I tried the gym and better eating which I’d put the weight loss down to and I did start to feel a bit perkier in all honesty. Then winter came and the 500 different meals and social events made an appearance and I decided that I’d give it a miss for a bit and be a pig. I found myself drunk off a minute amount of alcohol and unable to eat like I used to (I’ll be honest I’d always been a bit of a chubby monkey and I never struggled finishing a meal hahaha). Anyway the weight loss continued and people started to comment that I looked skinny (!), even if they were being kind it was great to hear. Anyway I decided to stop being self indulgent – I still was having the issues and I was starting to manage less and less food and enjoy being out and drinking a lot less and I just gave up a bit I suppose. Just before Christmas I managed to get the Doctor to refer me to a specialist for my stomach as it was becoming unbearable and taking a toll on my body, mind, relationships – everything. I was referred to a gastroenterologist and had an appointment 2 weeks later for my initial consultation (my mum works in the NHS and managed to get her friend to pull some strings – the Doctor referred me to the hospital gastroenterologist and they couldn’t get me an appointment until 5 months down the line). After a long consultation, some awkward questions and an even more awkward venture into my bum (please doctor I’m not that kind of girl!) I felt a bit relieved, scared and all round unsure as to what was going to happen to me. A letter came through with a summary of what the doctor had concluded during my appointment and the next steps – a scan and a colonoscopy. The scan went fine the doctor confirmed I was okay – I pretended I was having a baby scan to stop worrying (really stupid because I’m terrified of being pregnant any time soon) and it put my mind at ease. Then for the colonoscopy…….the results of that as as above.
Anyway I thought I’d write a bit about my experience so far – I’m new to the disease so I’m sorry for anyone already in the club who’s toes I may be stepping on. I know it’s not life threatening as it were – but it is life long and life altering and even though there’s pages of articles on the internet none of it seems real.
I thought I’d create a place where we can all talk openly about our problems with no judgements or holding back. I’ll update as and when I’m either feeling sorry for myself / inspired – my moods change constantly so it’s quite exciting. Said no one. Ever.
Thanks for reading and I hope this sparks some hope, humour, desire to open up to strangers. The usual thing these blogs set out to encourage…
Stay happy & healthy