The past few weeks have been one of the hardest of my life. As my body tries and fails to fight against the war inside itself, I’ve come to realise just how few people truly understand what a flare is, whether that be for Ulcerative Colitis or Crohn’s Disease. When I needed support most, I couldn’t find it. I felt completely alone and I put this down to the lack of understanding. In extreme cases, flares can be fatal and so as I sit here and recount what happened at my worst, i feel a sense of relief and gratitude, that i’m not in a worse off position. For somebody without IBD, the rough jist of a flare can range from slight symptoms of pain and excessive bowel movements, to the full blown whammy – dehydration, recurrent diahrroea, joint pain and stiffness, fatigue, sleepiness, skin problems, pain..the list is a bit endless. For the first time ever the full blown whammy is the one that i’ve dealt with recently and to try and raise awareness of what happens step by step, i’ve listed it below:
I wake up after a restless night of cramping to a distended abdomen. Adam mentions that I’ve grown an extra month pregnant in 9 hours. I joke and suggest maybe the secret twin has made an appearance.
By lunchtime I’ve lost my appetite and I’m in need of a nap. This is rare for me and as i lie down I feel as if I need the biggest fart of my life – I don’t, but it’s as if a million tiny people have blown balloons throughout my large intestine. That evening we go out for dinner; i struggle to cut a potato with the knife in my right hand. Joint pain is usually the first indication that I’m about to flare. My knuckles and wrist lock down, making it almost impossible to use my fingers and hand without wanting to rest for half an hour afterwards. I power through – I’m not going to let a Crohn’s third wheel my date night.
2am – I wake up with a mouth drier than a desert. As I reach for water, I realise that my tongue is laced with ulcers. The outside of my mouth has crusted and there’s blood on my pillow.
By 11am I have already spent the majority of my Mother’s Day morning on the loo. It’s not pleasant to pass that much liquid in such a short amount of time. Excuse the pun but diahrroea is a loose term for what passes through my colon during a flare. It’s a mixture of water, mucus, old and new blood and some unidentifiable brown liquid. Sounds better to pass than constipation, right? Wrong. Despite the lack of substance of this “poo” It makes me bleed externally. The pressure of it escaping my back passage is ferocious and all i can do in between movements is sit on the bathroom floor and cry hysterically. This in turn makes me sleepy and i almost poo myself 6 minutes later.
1.30pm – I manage to eat. This is good!
4pm – No bathroom breaks for 2 hours. Maybe it’s only a 2 day flare?
5pm – The headaches begin. Verging on a Migraine, it’s not a welcome symptom.
7pm – We have dinner plans. I have zero energy and zero useful hand movement. My right hip starts to ache. It buckles as I walk downstairs. I cheat with dinner and pretend a Taste the Difference Meal is all mine. It’s yummy despite the reborn lack of appetite.
I wake up feeling ok-ish. Adam goes to work.
9am – The bowel movements start again. It’s firmer this time though and I start to wonder if I’m on the way out of it.
11am – I call the IBD Nurse. I’ve just spent the past 2 hours battling Millie not to eat our bathroom bin or my unused pads whilst trying not to fall off the loo. My entire groin area is sore. There’s sick on the floor from where I’ve vomitted from exhaustion. The helpline is closed, she’s on holiday for 3 weeks. I cry as quietly as i can so that i don’t concern Millie. She laughs anyway.
12noon – I’ve made my way downstairs to hang the washing. The baby is in the highchair, playing happily. I call the GP. Emergency appointment at 3pm.
3.30pm – I’m admitted to hospital. The Gastro team want to see me as a priority. I can’t get there on my own; both hands have now stiffened and i have no energy. I somehow manage to put Millie down for a nap, and fall asleep from crying and wait for Adam.
6.30pm – The Gastro on call didn’t inform the medics. I go through A&E at the bottom of the list. Adam takes Millie to her Granny’s.
8pm – Rehydration drips are inserted and I immediately feel stronger. I’m told I’m to be admitted to the acute surgical ward and a doctor will be around soon.
1am – Still no doctor. Granny needs to sleep and Adam needs to sleep. He’s up early for work. He goes to collect the baby. Just as I’m discharging myself the Registrar medic arrives. “You’re staying until 6am. I want to monitor you”. I refuse. What is another 5 hours going to do in a hospital bed other than make me stress that I need to get back home in time for Adam leaving for work. There is an 11 month old involved and we move house in 3 days – how do I have time for my health? The doctor tells me to stay put. I don’t.
9am – After a heavy sleep from exhaustion, I wake to the sound of Millie crying. God knows how long she’s been left for. Making it into her nursery, all tears dry. She’s happy to see me and it makes me smile. I’m happy to be home. I call my parents. I need help. I can hardly move and there is so much that needs to be done. Our house isn’t in boxes yet and we need to leave in a day and a half. As I wait an hour and a half for my parents to arrive, I half fall asleep downstairs on a pile of cushions and put Millie in the highchair to watch TV. If anyone is mother judging right now, just don’t. I take 50mg of prednisolone and hope.
11am – My parents arrive. I’ve left the door on the latch. For the 30 minutes prior to their arrival I’ve been on the bathroom floor retching and trying to use all my energy to get onto the loo as to not shit myself. Somehow Millie was put down for a nap inbetween all this. I don’t remember. My parents mention how awful I look and I crack a smile. Cue ulcers and lip swelling starting to bleed.
3pm – The Humira nurse arrives as my parents drive home, taking Millie with them for 4 days. I have never felt so much relief in one moment.
5.30pm – The nurse has gone and I am drowsy. 160mg of Humira has started to kick in and I just want to sleep. Shame all the packing needs doing still. I resist sleep and power through. My body feels different – better perhaps?
7pm – Adam returns home. I’m a lot better than when he left me. I have colour in my face and my eyes are almost fully open. We manage to do several storage trips that evening and the house is almost packed up. I fall asleep at 11pm and don’t wake until 6am. I’ve never felt more alive. Thankfully this lasts for the next 4 days so that we’re able to move house with my help until the effects of Humira start to wear off.
This was a month and a bit ago now. I inject with Humira every other week. I’ve had 4 doses now and already I’ve noticed a slight improvement in my symptoms for the first 5 days post administration. After that I go downhill quite quickly with my symptoms usually following from high energy levels to extreme fatigue, bowel movements over 10 times daily and joint pain which has been off the charts recently. I expect being 30 weeks pregnant with a big baby on the 97th percentile isn’t helping my case as the pressure I feel every day of the baby weighing down on my pelvis is causing a physical bulge around my colon and that can’t be good for my body. Everytime I go to the bathroom I felt as if I want to give birth and although that is near impossible at this stage of pregnancy, it’s a constant worry and one that has caused me added stress. I’m being induced no later than 37 weeks this time, which is a relief and I’m being urged to consider a C-section from family members, which is not so much a relief. I’m taking it day by day and I’ve finally come to realise that if on one morning I wake up and struggle to carry my daughter downstairs, it’s OK to spend the day sitting on the sofa with her watching a film or playing with her blocks I stead of exhausting myself with a walk to the park. Sometimes I wonder if she understands that mummy isn’t well; she’s gentle with me when I’m drowsy and fatigued. She strokes my arms and open mouth kisses my face when I want a cuddle and if there’s one thing I can do every day for her, it’s that I’ll show her compassion and be kind. She’s only 1 and already I’m worried she’ll have to grow up too soon. It’s also a constant worry that the effects of Humira will harm the baby as no trials have been conducted on pregnant women with Humira. I don’t mind being a testdummy, even for 4 to 5 days of improvement every two weeks I’m willing to continue with the drug through to the end of pregnancy but if anything happened to my unborn baby I would never forgive myself. At the same time I have a growing child with me every day who needs me at my best and so what might be worse for one baby is better for the other. Someone asked me the other day if I had a disability and I said I didn’t know. I’d call it more of an illness but that implies that you’ll get better over time. The truth is that I know I won’t be getting better and maybe if it comes down to having surgery one day I will, but until then I have the classic case of being unable to function like a regular human on a daily basis, whilst looking “fine” on the outside. So many more people are yet to learn about the invisible illnesses around us. Just because someone is smiling, it doesn’t mean that their hip doesn’t feel like it has shards of glass in it or that they’re trying so hard not to fall asleep infront of you as to not be “rude”.
If you know someone with IBD, ask them how they’re feeling. Help them feel supported and listened to and best of all? Keep any suggestions such as, “more vitamins?” or “how about some saurkrauht?” at bay – I don’t want to be ungrateful but don’t you think if someone is at the stage where they have to inject themselves to keep their body going, that maybe they’ve considered that?
World IBD Day, 19th May