20yo/F from Australia. Diagnosed at 14 with pancolitis after a year of symptoms, later diagnosed with sclerosing cholangitis as well. Pretty much tried every med and on the road to surgery.
Approx 15 bm’s per day
Appetite varies between not wanting to eat anything and wanting to eat everything in site
Myriad of general aches and pains
I was first diagnosed when I was 14 after being rushed to the emergency room by my parents. I’d been having frequent bloody toilet trips for about a year, but being only 13 I was afraid to tell anyone.I reasoned that because my period had stopped, the blood had to come out somewhere and I was lucky for not having to deal with periods. I knew it was illogical but I didn’t want to admit I was sick, I was in total denial.
For months prior to being diagnosed I had started missing a lot of school. I’d get half way to the bus stop and have to run home to poop or puke. My parents refused to believe I was sick because by midday I’d be relatively fine.
It had got so bad that I couldn’t even make it up a flight of stairs without stopping to sit down. Walking between classes was like running a marathon. I couldn’t even go shopping, if have to sit down on the floor at every opportunity.
The saving moment came when I woke up one Saturday with a headache so bad it had me in tears. I was a tough tomboy who never cried over anything. I couldn’t stop vomiting. I was slurring all my words and getting frustrated. I’d try to say yes and a completely different word would come out. When we arrived at the hospital I stood up to walk in and collapsed on the car park ground. I only remember bits and pieces of that day in broken recollections. Getting out of the car, being on the ground suddenly, sitting inside in a wheelchair. I remember the triage nurse asking me questions and having no idea what she was saying. The worst part of the day was having a finger shoved up my butt. What kind of 14 year old is going to let you do that without a fight? Even though I could barely stand I still kicked up a fuss over changing into a buttless gown, probably the thing I remember most vividly.
I was later told I had 3 or 4 blood infusions that day and was close to being in a coma from the blood loss.
Since then I’ve had different drugs flung non stop at me.
I started with Prednisolone like most people and at my first specialists appointment was prescribed mesalazine granules. I don’t remember how long they worked for, but eventually I was admitted to hospital again because it had built up to toxic levels in my body, I had waste coming out of every orifice. They didn’t believe it was causing the crazy pooping and puking and had me continue it at the hospital where it caused me to poop so violently I couldn’t even make it to the toilet that was mere metres away. After crapping myself at least 4 times in an hour they finally believed me.
Since then I’ve tried Azathioprine, Infliximab, methotrexate, olsalazine, mercaptopurine and sirolimus. The ones that actually worked were causing liver problems and had to be discontinued. Others just didn’t work, and one messed with my bone marrow or something.
At the moment the only option left is surgery. At the start of all this I was completely against the idea of ever having surgery, but at this point I’ve given up faith that drugs will work. I’ve had years to get used to the thought of surgery but it still terrifies me. Before they can start surgery I need to lose weight, being on steroids almost the whole 6 years hasn’t helped. I was always bigger, except when I was horribly sick, but now I’m about double the healthy weight I should be. At 5 ft my aim is to get between 50 and 60kg.
I haven’t been putting much effort into losing weight because I’m really worried about surgery. Thankfully I have a supportive boyfriend who understands but living 4 hours away definitely makes it difficult.
Where I’d like to be in 1 year:
Every year I think “Hopefully this or that drug will have taken affect and I’ll be well by Christmas” but it’s never the case. Ideally in one year I’d like a cure, but we know that’s not going to happen. Realistically, I’d like to have at least lost a decent amount of weight and possibly have had the first surgery.
written by 20 Year Old
submitted in the colitis venting area