The next Mega Flare…and how I stayed out of hospital.
It took 3 weeks from leaving hospital after my last stay for me to be so severely ill I was considering going back. But by some miracle (and lot of hard work) I have stayed out of hospital. Something I was determined to do as it’s been Christmas! I wanted to share everything I tried so that perhaps it can help someone else in this situation cos my god it’s not pretty and it’s like torture.
First let’s talk about the symptoms - it ain’t pretty so turn away now if you don’t want poo chat:
Severe abdominal pain to the point of crying for hours
Urgent extremely watery stool with bright red blood 20 x a day
Fatigue to the point of not being able to walk downstairs
Nausea, no appetite
Low blood pressure, higher than normal heart rate
Because of all the hospital trips I’ve learnt a lot about my colitis flares, how my body responds and when I need help. I know that a. the above is a severe flare for me and b. that once my blood pressure drops and heart rate rises, I’ve lost control and need help. This is because of my heart condition, this may not be normal for UC patients.
The first 5 days of this I struggled. The pain was so severe and I was afraid of being stuck in the cycle of needing more heavy steroids and being admitted to hospital again.
So, I:
Rested. I mean literally laid in bed and did nothing else. Didn’t want to, couldn’t think about anything but going to the loo. Not good for the brain and the fear but little choice. Shaking, shivering, horrible.
Meditated. I found a great meditation on the gut and one of manifesting health…completely relaxed me.
Took ALL my supplements - now this was hard. When I felt like I wasn’t getting better, nausea and like utter shit, taking 20 + pills isn’t fun.
Meds: prednisolone, mezavant and pentasa
Zinc, Magnesium, collagen, b12, lions made, quercetin, biotin, vit d, vit c, k2, tumeric omega 3
Took L- Glut, VSL as drinks.
Took potassium for my heart - when you have loose stools you lose potassium which you desperately need for organ and nervous system health. Docs said don’t self medicate so get advice here
Paracetamol every 4 hrs for the pain
Drink, drink, drink + electrolytes. As soon as you get dehydrated it’s a one-way ticket to hospital and heart problems
Kept on top of my vitals: temp, blood pressure and HR
5 days in I got my bloods done and a stool sample to check for infections and any major deficiencies that would be blocking my recovery. All ‘OK’.
So then it was time to knuckle down, keep believing I would improve and add in a muscle relaxant for the stomach pain. I ‘think’ it’s worked wonders. Late night googling has it’s advantages…but seriously at the time it was a risk, it could have made things worse. It’s such a roulette and a constant head f**k of ‘what more could I be doing’. Surely there’s a way to heal.
I knew I had to eat. Partly for energy and partly because an empty gut would get further acidic and more crampy. I ate GF pasta, bread and protein only (chicken, hummus). I lost 4kg in 10 days.
11 days later and whilst the mornings are still really hard and painful, I am improving everyday. There’s a long way to go while I wait for the Ustokinumab to kick in but there is only one way this train is going. Are you with me? 27 days till dose 2.
Once again as a UCer I completely fall through the system of care. The GP can’t do anything because they don’t understand the condition. The hospital can’t give me anything but admission to the ward and hydrocortisone. It’s terrible, it’s lonely and it’s not good enough. We will make sure care and knowledge improves…once I’m better. We are on a mission!
Wishing you full health, always,
L x
p.s Why was I so reluctant to take more steroids? They absolutely have their place but my body has been through 3 cycles of this now and each time they risk harming your organs, bones, all my hair falls out on my head (and grows on my bloody face!), my body swells completely and it’s very, very uncomfy. It’s good for the UC but not for the rest of my body, it’s toxic. And I’m quite sure one day we’ll all work out that it was driving such high doses of the stress hormones in my body that it was making the UC worse long term… so, while I can I’ll avoid it.