A pile of dirty dishes

I find myself on the brink of yet another flare. For the past month the signs have been steadily building, starting with the crippling joint pain. In the past my joint pain was restricted to my left hip and wrist. This time every bone in my body seems to screaming in agony particularly in my hands. Perhaps it’s because we’ve had so much rain. Perhaps it’s because I’m getting old. Perhaps it’s because the UC is getting worse.Two months ago I started bleeding. I was put on Prenislone. After two days I felt amazing. Bleeding gone. Diarrhea halted. Urgency abated. Appetite back. A week later, I’m in a place I’ve never been. I can’t stand to be around anybody. I am disconnected from my children. I’m having panic attacks and suicidal thoughts. I have steroid induced psychosis. I immediately stop taking the roids, my Dr advises this over weaning as I hadn’t been on them that long. The withdrawal is horrific. I have gained 28lbs in 3 weeks, I am constantly lightheaded, nauseous, depressed, and frightened. It took me a month and a half to recover. A week later, the joint pain started….

I look around my tip of a house and realise I can’t go on like this for much longer. The dishes are piled high in the kitchen. There’s a basket of laundry that needs folding. My children’s bedroom is a mess. My bedroom floor has become my wardrobe. I am not fulfilling my role. Partly through not being able to physically, as I’m exhausted and partly because I am mentally and emotionally drained. It’s like a vicious circle. I know I need to do these jobs, the fear of discomfort stops me from doing anything. I get despondent. Nothing gets done.

So here I am, running to the toilet for the seventh time today, not seeing any blood but knowing it’s only a matter of time. Knowing that I will not take steroids ever again as I can’t put my family or myself through that again, but also knowing that if don’t I’ll end up in hospital again on steroids anyway and possibly with an emergency surgery.

I pray that I “get away with it” this time. That this is just a blip. I’m seeing my GI at the end of June – if I make it that long. He will be letting me know the outcome of a meeting he had with the surgical team about my case, as I discussed the possibility of an elective colectomy at my last appointment. I left that appointment wondering if I had been too hasty, if I should continue down the medical route – better the devil you know and all that. As I sit on the toilet writing this on the iPad I come to the conclusion that I may have reached the end of the road. Perhaps it’s time to let go, give in to the inevitable, have it out and be done with it.

Six years later

July 2002.

I am sleeping on the sofa in the living room as it is next to the bathroom. I have just had my first accident at 23 years old. Humiliated, I resolve to see my doctor in the morning as this food poisoning is out of control.

November 2003

I am signed off from my second job for two weeks as my wrists are killing me, and the wonderful folks at Amex are worried I have developed repetitive strain injury from using the computer. Full pay though, so I’m not complaining! I am napping during the day between jobs. This is normal right? I’m working long hours, of course I’m tired. And I guess it doesn’t help that I was up half the night on the toilet. I’m definatly allergic to prawns which is most annoying as I love them.

February 2004

I collapse as I’m walking to work. My hip just gives way on me. A stranger has to help me up. My wrists are sore and how I’ve managed to poison myself again is anybody’s guess!

September 2004

This is getting beyond a joke. I am sleeping more often than not. I’m pooing more than I sleep.

October 2004

I’ve just got home from holiday. Portugal for a friends 30th, then Dublin. What a bloody disaster. Portugal was great – 5 days of eating my body weight in seafood (I don’t care that I’m allergic, it was FABULOUS!) and drinking obscene amounts of alcohol. By the time I got to Dublin I felt like I was about to die. Not good, seeing as I was there to support my friend who was running the marathon. I am officially the worst friend ever, as I spent the entire time in the hotel asleep and pooing blood. Lots and lots of blood. I have spent a fortune on teary phone calls to my mum as I’m freaking out. Something is not right. Food poisoning does not do this to people. Neither does a hangover.

I see my doctor who fobs me off again, telling me it must be something I’ve eaten. I’ve had enough. Desperate times call for desperate measures. I make an emergency appointment, poo in a sandwich bag, and dump it on her desk as I enter the room stating “look at that and tell me it’s food poisoning!” To say she was disgusted is an understatement. She goes on to say “I’m sure it’s nothing to serious, it’s not like you’ve got cancer!” I’m flabbergasted. I run out of her office in tears. By the time I get home I shaking with rage. I write a letter to the practice manager, complaining about the way I was treated. A week later I receive an apology and an appointment with the Digestive Diseases department at the hospital for a colonoscopy.

January 2005

I have Ulcerative Colitis. Pan Colitis. Whatever that means.

February 8th 2011

I sit at my computer, writing this in a haze of confusion. This is because I have just got out of hospital. I have spent the past six years in denial and I have just woken up to the fact that I am living with a chronic illness.
My disease has never been controlled. This is mainly because I have not regularly taken my medication. I get to a point where my symptoms are under control and then I play Russian Roulette with my health, I stop my meds. Convince myself that I don’t need them. My symptoms are under control, I’m really not that unwell. I’m overweight (I’m not lucky enough to “suffer” from weight loss). Fast forward 3 months, I’m back on the steroids as I’m pooing blood 20 times a day. You would think that I would learn my lesson after the second or third time right? In this time I have had a child (lost 35 lbs whilst pregnant, silent flare?) been hospitalized whilst on holiday in America (thank god I had travel insurance), Ran my own restaurant, which was perfect as I could work around my disease, lost the business due to the recession, got a job then lost the job as I had a flare and couldn’t work. Signed off work and am now living off state benefits as I’m deemed not capable of working – m y how the mighty have fallen. I also manged to get myself knocked up again – it turns out the contraceptive pill doesn’t work when you’re having a flare, lost another 35lbs whilst pregnant, and had a terrible flare at the start of the pregnancy. Taking prednislone whilst pregnant was awful, worrying about the effects it might have on my baby but knowing that the benefits outweighed the risks. He’s perfect by the way.

Four weeks after he was born, I go into another flare. I’m literally running to the toilet with him attached to my boob. Three in the morning, my darling son on the bathroom floor, screaming with hunger, as I’m cleaning up the blood and poop. My four year old daughter wakes up, comes into the bathroom, bleary eyed, stating “Oh no mummy, not again.” and then takes herself back to bed. THIS IS NOT RIGHT.

I’m exclusively breast feeding and my son is constantly attached. He never seems satisfied. The health visitor comes to weigh him. He has dropped weight. “How is this possible, he is ALWAYS feeding?” Never for a second do I think that my disease is to blame.

I see my consultant and am put on 40mg of prednislone, reducing after a week. I finish week one. I’m still bleeding. I decide to call for advice as it seems silly to reduce. He tells me to come straight to the hospital. It should be working. They need to test my blood. I never for a second think I’ll be admitted.

Day 3 of intravenous steroids. They are not working. Sigmoidoscopy reveals severely damaged colon. I need surgery. WTF??? I feel fine.

A lifeline. Clinical trial of two drugs, Cyclosporin verses Infliximab (remecaid). They want to see the long term benefits of them. Which one I get is decided by computer. I have to stop breastfeeding at once. It is the only thing that might save my colon and there is no guarantee it will work. Am I in? The computer chooses Infliximab. We wait and see.

Day 7. My inflammation markers are steadily coming down. I’m not out of the woods yet but it’s looking hopeful.

Day 9. I feel TERRIBLE. Even though the bleeding has stopped, the frequency is dramatically reduced and the stool is forming, I feel worse than I did when I was admitted. Constantly tired, confused, metallic taste in my mouth, my legs don’t work, my head is foggy. It’s strange because my flare is under control.

Day 13. I can go home. Hospital has been such a positive experience. The girl in the bed next to me was admitted with a severe UC flare the week after I arrived. She was newly diagnosed. She was freaking out. I was there for her. Listened to her. Advised her. Became her friend. I am convinced that I was supposed to be there for her. Through her, I have finally accepted my diagnosis. I respect that I have a chronic illness. It has taken being separated from my children for me to wake up to the fact that I have to take this illness seriously. I have to look after myself or how the hell am I supposed to look after them? I still feel terrible. How I’ve managed to write this I don’t know. I’m glad that I did though.