So. I have a bowel disease.
Surprisingly, it’s not something that I feel comfortable talking about. In fact, I’m kind of ashamed by it – and I don’t know why. I guess there’s a taboo talking about your intestinal tract in polite society. But then again, I’m not sure we live in a polite society any more.
Also, it’s not really anyone else’s business. Now, I know that you may find this ironic, as I’m writing about my bowel disease in a public forum. I guess I’m more comfortable typing about it to my anonymous (and non-existent – I can say that as this is my first blog post) audience in the safety of my study, than I am speaking about it to friends and family (fiancé and mother excluded).
To get technical, I have an irritable bowel disease called ulcerative colitis. Irritable bowel diseases (IBDs) are different to irritable bowel syndromes (IBS). Like, I feel sorry for people who feel bloated after eating gluten, but seriously, get out of my way when I need a bathroom.
And I guess that’s one of the biggest problems with having an invisible disability. Does it give me the right to use a disabled bathroom? Because if there’s a mile long line to use the ladies, I’m going to use the disabled bathroom. And I get a LOT of stares when I do. I just want a card from my doctor that I can flash instead of having to feel the need to explain myself. “Sorry, I needed to empty my colostomy bag and there isn’t enough room in a normal cubicle.” “Sorry, I have uncontrollable diarrhea and intestinal bleeding and I couldn’t wait in line for 7 minutes.” “Sorry, I know you’re on crutches, but I have a disability that you can’t see.”
Anyway, you can do your own research on ulcerative colitis – I’m not a doctor and I can’t tell you anything that Google won’t tell you. I will tell you a little bit about the medications I am on for it though, in case you or someone you knows has ulcerative colitis and may be on the same medications. But please remember that different people react differently, and I am only speaking from my own experience.
Azathioprine – it’s an immunosuppressive drug. I’ve been on this for nearly a year now. I’m not allowed in the sun because this increases the chance that I could get melanomas (and I live in Australia so that chance is pretty high anyway). It makes my gums bleed when I brush my teeth. Apart from those it’s ok – it tends to keep the bowel flares away unless someone comes to work with gastro or the flu and my paltry immune system goes into overdrive. It also makes my hair fall out.
Allopurinol – this is technically a gout medication, but helps when the colitis flare causes red lumps on my legs. When these lumps first appeared I thought I had been bitten by fifty ravenous mosquitos. They were red and raised and itchy. I didn’t even think it was related to my colitis until I had an appointment with my doctor and casually mentioned it in an offhand comment. Thankfully they’re all gone now because I could not even contemplate shaving my legs with them. I’ve been on allopurinol for about six months.
Infliximab – this is a medication administered intravenously and is an antibody drug used to treat autoimmune diseases, arthritis, psoriasis and IBDs when ‘normal treatments’ aren’t working as well as they should be. Basically I have to go sit in an oncology ward for a few hours every 8 weeks to receive this transfusion. And it is surprisingly exhausting. It makes you feel weak and drained. I’ve had this treatment four times now and I’ve slept twice while having it, and at home afterwards three times. I don’t know what it is about it, but thankfully I have it on Friday mornings, and I tend to sleep or rest the remainder of the day away and also sleep in on the next morning (this may not be attributed to the drug – I sleep in most Saturday mornings).
Steroids – blegh. I hate taking steroids. I’ve been on and off them for about a year now. I have gained so much weight from this, and increased hair growth – so gross. You constantly feel bloated, your face looks like a full moon, I’m constantly cranky – and hungry – and I just want to Hulk rage out about everything. And they aren’t good for you long term – they make your bones brittle, and people hate you because you are incessantly bitchy.
All these drugs together means that I don’t have an immune system. I rely on herd immunity and vaccines. I had the chickenpox vaccination three years ago (you only need it once in your life if you haven’t had chicken pox), and still got chickenpox this year. I have to get the influenza and pneumonia vaccination every year, and I still get sick. I have to get the pertussis (whooping cough) vaccination every 3-4 years and god help me if I catch that again. But when you work in an open plan office someone is bound to come in with something. I’ve been home with gastro (which unfortunately can trigger a bowel flare) about 8 times in this last year.
Thankfully I haven’t been admitted to hospital this year (with the exception of tests and treatment), which is a big improvement on last year. But it has been tough too. In January I had a bout of salmonella food poisoning and was out for the count for 2 weeks. I’ve just had chicken pox and had another 2 weeks off. Colds can take a week to get over at a time – gastro as well.
My work knows all about it, and they’ve been great. I’m also lucky that I was relatively healthy before I was diagnosed, so I had accrued a fair amount of personal leave that I could access.
But I owe a lot to my mum, my fiancé and my fantastic doctors. They’ve been endlessly supportive, encouraging and always there for me when I need something. So it’s not all bad.