My name is Rebecca and I’m 22 years old. I live in Melbourne, Australia and I was diagnosed with colitis last Christmas, around the same time I graduated from University (College). I have a love for novels and hope to complete my own one day.
Weight loss, stomach cramps and what has recently become extreme bleeding.
I had never heard of the condition until I was diagnosed with it last Christmas. It all started at the beginning of last year when I began to notice spots of blood randomly appearing on the toilet paper. I can’t explain why but I didn’t think anything of it. It wasn’t until a graduation trip to Thailand that it started getting really bad, but as most would, I assumed it was just a case of Thai belly. 2 weeks after returning home, it still hadn’t cleared up and I realised that it had been 4 months since having a “normal” toilet experience. My doctors daughter actually had UC so he sent me to see a specialist immediately and since that visit my life has become… well, nothing like I would of imagined it to be. My life literally revolves around Ulcerative Colitis.
I’ve changed so much from the person I was 8 months ago and it scares me. Bec 8 months ago would get excited about going out for a drink, she’d be writing a list of publishing houses to send her CV to and the only reason she would think twice about eating that choc chip cookie would be the calories. Now, going out for a drink isn’t worth the aftermath and even thinking about my career stresses me out and we can all recognise that’s an enemy. If I try to look at the bright side, I guess due to the fact I loose weight from doing absolutely nothing, I don’t have to worry about calorie intake…but than again, now that same choc chip cookie does a lot more damage than adding some to my backside and I’d take the bigger behind over UC any day. I’m literally beginning to see myself split into two different people. There is the girl trying to fight UC and then there is the girl trying to keep even the slightest normalities of life before UC.
Reading over everything you’d think I was a miserable and negative but I’m not and that is the hardest part. I can’t bring myself to show how hard this is on me and how scared I am of what’s happening. I’ve always been the person my friends and family go to for advice. I’ve always tried to see the bigger picture and have a positive outlook on things and that is how people know me to be. I refuse to let them think I’m not that person anymore and I refuse to let people feel sorry for me. As a result I’ve become the ultimate two face. My friends and family are so supportive but they don’t get it and I don’t think they will ever be able to get it unless they have it themselves. They don’t know how bad it is because I don’t let them know. They know the new medication I’m on or if I’m having a bad day but I don’t let them know how bad it gets or that I’m really worried. I think that is why I’ve dec ided to post this and even if I never come back to this site (which of course I will) but even if I didn’t, I already feel that little bit lighter because I can actually just say it how it is.
I’ve tried multiple medications and none have worked. Until 2 months ago I had refused to take prednisolone but it got to the point where my doctor put his foot down and I’m glad he did because I now know that it was the idea of taking steroids that was the scariest part. Starting on 40 mg and taking salazopyrin (8 per day) I started seeing really good improvement but of course I have to be that percentage that becomes reliant on the roids. As soon as I got down to 25mg I started to waiver. I got hit with a cold and all went down hill from there and now here I am. I’m currently on 30mg of prednisolone, salazopyrin 8 per day and recently 6-MP 75mg per day. The 6-MP doesn’t kick in for 2 months so I’m in the waiting stage. I have no idea if in two months it will work and I’ve been on so many meds that it is hard to feel like “this is going to be the magic one”…
Quickly, poo talk doesn’t faze me but I’m sorry if those reading are fazed by it. I’ve found that tracking them is the only way I’ve become able to read my colitis. Currently any kind of solid stool has become mute, I am literally only passing blood and mucus and I don’t know if I should be scared about it or not. It has become so much of the norm to me I don’t know what is classified to be mild or severe. I’m still walking around doing my day to day things and apart from the fatigue from the 6-MP and the constant cold because of my lack of immune system – I feel fine, I’m just passing blood none stop. Okay, my biggest concern is this – I’ve read a lot about people being crippled from pain and rushed to hospital – I’m not like that. I’ve become so used to living with UC that I can’t tell when I should be worried. Every session with my specialist starts with “how are you feeling?” and my friends and family always ask “how are you feeling?” but I don’t know! I have lost the ability to tell how I’m feeling. Nothing has improved, it has only gotten worse and now I can’t remember what normal is…
I didn’t really have a particular question in mind but just writing about everything feels good, so I’ll leave it with this…
“Anyone can give up, it’s the easiest thing in the world to do.
But to hold it together when everyone else would understand if you fell apart,
that’s true strength.” – Zig Ziglar
Where I’d like to be in 1 year:
At the end of next year I’m planning a year trip around the world with my best friend. Starting in North America, then heading through South America, then across to Europe and ending in Bali. So in 1 year I’d like be in remission and off all medication OR on a steady medication that I know is working and keeping me in remission :) I’d like to be having the best trip and my UC not affecting it.
Not sure about my medication…at the moment the only one I can safely say worked is the prednisolone. I will share a smoothie I have every morning that I believe makes me feel a lot better on the inside and out.
250 ml apple juice
45 ml Aloe Vera Juice
1 tablespoon of Miessence InLivin powder
1 tablespoon of Miessence Green Alkalising powder
1 cup of mixed berries
Couple of ice cubes
written by Bec
submitted in the colitis venting area