Hi all fellow ucer’s, this is my 2nd vent in as many months, I am 48, a amother of 3 and a nana of 1. Have lived with this hell of a illness for 10 years. I want my life back, but then anyone reading this will know that’s all any of us want.
Current UC Symptoms:
Started back in July on holiday in Spain, still suffering now, hasten to add recently stopped smoking!!!!!!!!!! So usual symptoms you experience during flare time all of them awful and scary.
I am wondering seriously if continuing smoking really does keep colitis at bay.
I stopped smoking in April of this year after smoking 30 years, and by July I was in full blown flare. Hospitalized twice on iv steroids, however i am steroid resistant so they say as i had no response and only got worse. My second siggy was far worse than my first one even after weeks of high dose evil steroids, i really can’t tell you how rough they make me feel. And even though i am resistant i have to still do the stupid taper off, cos it’s dangerous to just stop.
Has anyone ever just stopped???
Anyway, after lengthy talks with the poop bag nurse surgery was looming and i would have the ileostomy, the thought of emptying a bag of liquid 6 times a day including during the night filled me with dread, does anyone have one, and how do you cope with it?
At the eleventh hour my consultant decided we could try infliximab which has a 1 in 3 chance for uc, its better in Crohn’s. I mulled over it read the literature and really almost refused it, drugs, drugs, drugs sick of them, Anyway they talked me round, and I had my first infusion with hesitation, had to have the flu jab, more drugs!!!!!!!!!! I have however seen changes already but there are no guarantees and they say it can fail on the second or third infusion, guys i feel for all of us living with this illness, i feel like i am existing never living.
I have started taking probiotic acidipholus too and making fresh soup daily, no bread, all i want is fish n chips, curry, chinese, once in a while like everyone else, I can’t even do my much loved jogging or spinning cos i have zero energy and the steroids have made me gain 16 pounds even though i am eating less, this illness is pure evil.
Where I’d like to be in 1 year:
Happy, healthy, and possibly in love. no drugs at all !!!!!!!!!!!!!
pred steroids, 4 mezzavent, calcichew, and infliximab in hospital via the drip feed every 2 weeks
written by Julie
submitted in the colitis venting area
“Hey Julie, if you haven’t already, you should take a look at the Remicade/Infliximab 35 patient survey we conducted here on the site a short while ago. There’s lots of great information within the survey answers and it’s there for you to take advantage of reading.” – Adam Scheuer