Posted 9/2/2016 5:15 PM (GMT -6)
I hope you don't mind a bit of a long ranty post, because that's what this is. I'm just so tired and frustrated.
To cut a very long story short, i was diagnosed with ulcerative colitis when i was 18 at the end of 2013, after a lifetime of stomach issues that everyone put down to 'the fact that i have anxiety'. It took two stone of weight loss, a misdiagnosed eating disorder, a threat from my GP to put me on a psychiatric unit, before i took a photo of the blood that was coming out of me 30 times a day, and showed it to my parents and GP. Only then was i taken seriously.
Fast forward to my second flare up, which started 6 months later. Again, i couldn't eat, i was on the toilet constantly, could barely walk or go to work, and yet my GI still did nothing because i didn't 'look ill' when i went to my outpatients appointment. It wasn't until i demanded a colonoscopy (which showed dreadful ulceration), that i was finally admitted to hospital again. In my GI's words; "i couldn't believe how awful your colon looked and how ill you are, considering you look so well". I was then re-diagnosed with indeterminate colitis and put on Azathioprine.
I had quite an amazing 9 month period where i was well (albeit exhausted), until some symptoms came back earlier this year. I now feel sick after each meal, i have next to no energy, have constant, sometimes agonising pain every single day, and just generally feel miserable and out of sorts. Any food i do eat (which is very little) goes straight through me, and I've lost almost a stone in August alone.
I've phoned and seen my GI multiple times, and have been told that because i have no blood, it means that my UC isn't active. He put me on IBS medication, which has done nothing. Ive taken every single anti sickness tablet available, and they've done nothing. I was found to have an extreme Vit D deficiency, and had an adverse reaction to the tablets. I also got referred to a dietician, who told me that she has no advice, because i'm a difficult case considering i have no appetite and feel sick no matter what i eat.
My GI says that i need to just live with my symptoms, but i don't know how much longer i can go on like this. I'm so, so exhausted that i can't get on with my day to day life. I'm weak with not eating, i'm in pain, i feel sick, and can't even walk up the stairs without feeling like a 90yr old woman at 21.
What's worse is that my family and boyfriend, as much as i love them, don't seem to understand the extent of how I'm feeling. My dad gets understandably annoyed that i haven't done housework, or walked the dog, or eaten, because I'm just so weak. I get made to feel guilty for these things and told that I'm lazy, as if i wouldn't give anything to take my amazing dog for a long walk in the sunshine. They all seem to think that if I'm not complaining, or if I'm laughing, that i don't still feel like crap on the inside. Not to say that my family don't try to understand, but like my GI, they seem to forget i have a chronic illness, and that if i look ok on the outside, i must be.
I'm sat here crying at my computer because I'm meant to be travelling 4 hours on the train to visit my boyfriend tomorrow, and i haven't even packed my bag because I've been leaning over a bucket for most of the day. If i manage the journey, I'm scared that i'll find it hard to keep up with him when I'm there, or that we'll spend our days revolving them around food, and me feeling sick, and the fact that i need to know where a toilet is at every given second.
I know that others have it so much worse than i do, and that i shouldn't really complain, but i'm so, so miserable... and sick of pretending that I'm not. How can we be expected to live our lives this way and just carry on as normal, when every minute is a struggle?! As always, i appreciate any advice or support so much.
I hope that you're all doing okay xx