ulcerative colitis feelings

How Im feeling today

Firstly thank you so much for the wonderful response to my last blog post about Why Im Choosing to Have my Bowel Removed. I had so many messages and emails of support and so many from people facing their own battles. Every message is so greatly appreciated.

Today Im writing about feelings. About how I feel dealing with Ulcerative Colitis and how it affects me mentally and emotionally.

On Thursday my consultant upped my steroids again, I had tapered down but started flaring again. The meds don’t seem to be working. Im feeling worse and worse each day… Im waiting till 2pm so I can call my specialist nurse for advise on what to do next.

So here’s what Im feeling today…

ulcerative colitis feelings

Fear – Im afraid of what is going to happen to me – afraid of the medications, the thought of surgery. Im fearful that people will get fed up of me always being ill.

Sadness – Man, I feel so sad right now. It’s a sadness so deep it feels like a punch to the gut. Im VERY good at pasting a smile on my face and being the silly, happy joker but this sadness is creeping right through even my fakest of smiles.

Frustration – Im frustrated with my body, I wish I had a magic wand that would just make me not be sick…

Envy – I suppose this leads on from frustration. I envy people who are well and just wish I could have a normal body.

Anger – Im angry that this is the hand I have been dealt – I want to shout like a toddler ITS NOT BLOODY FAIR!

Anxiety – My anxiety levels are sky high, I lay in bed at night worrying about EVERYTHING.

Confusion – With all these other feelings going on it is probably not unusual that Im confused. At times I feel like I just want them to operate. Today. Then other times Im terrified and wonder if there are any other options. Should I be looking at a raw juice diet? What if I were more spiritual and started meditating and doing yoga every day? Perhaps if I could just lose weight it would be better? Or maybe it’s because I am stressed? Logically I know that I have a disease and this disease needs treating with medication, I didn’t do anything wrong to get this but at times I can’t help but blame myself.

Guilt – This is my biggy. I feel so guilty. All the time. I feel guilty that Im not the mother I should be because Im ill in bed. I feel guilty that my kids worry about my health. I feel guilty that the steroids make me have flashes of anger and I tell the kids off when they probably don’t deserve it. I feel guilty that my husband doesn’t have a ‘normal’ wife. I feel guilty that my friends and family have to help me out with childcare. I feel guilty that Im not pulling my weight with the business because Im laid in bed. I feel guilty that my husband has to take on both our roles. I feel guilty that I ruin days out because I need to be somewhere near a loo and then spend most of the day in the bathroom. I feel guilty that we can’t plan to do things because we don’t know how well I’ll be. I could go on forever… Guilt is a shit feeling.

Love – I thought Id end on a nice feeling. My husband is fab, he deals with my illness so well. He doesn’t pander to it, or treat me like a sick person. He takes the piss out of me. He makes me laugh. He sits with me when the insomnia kicks in and listens to my random questions about giraffes at 2am. He sends me to bed when he sees I am struggling. He takes on the roles that would usually be mine without complaint. He pinches my bum and tells me Im beautiful even when we both know I look like shit. He sits in bed with me and we play dice for hours. He tells me everything will be ok. He comes to my appointments and makes sure my voice is heard. He say ridiculously inappropriate things and makes me howl with laughter. He makes me feel better. He loves me.

Thanks for reading xxx


4 thoughts on “How Im feeling today

  1. Wow. What can anyone say to that? To say you re amazing to be coping like you are is not what you want to hear iam sure. You cope because you have to. You are a mom, and moms do it. Maybe you can’t ALL the time, but none of us can.
    There are no magic wands or words that will take it all away. You got this hand dealt and YOU are coping with it. AND you got the best man beside you to do it too. Many men would be off, unable to go through that day by day, but you have been given a wonderful man and children that never question their roles.
    All the other feelings you are going through are normal Sam. Feelings people go through with many illnesses and thats normal. You are a strong, beautiful woman and i am thinking of you from this far away land, wishing i was able to be of help to you. Christmas will be here soon and you will be here with your beautiful sister and having a wonderful time with time to forget your troubles if only for a while.
    Love ya girl. xxx


  2. I know this is an old post but thank you so much for sharing this and everything else you’ve posted. I have Fibromyalgia and am flaring up right now, and had a tough break down this morning with my man. Before he went to work (the worst!). I feel like hell, not just cuz of my illness, but for making him feel awful as well. After a good cry I found your blog and have read several posts. It’s helping me to pull out of this mental hell hole and I’m just so grateful. Thank you. I’m so grateful we have the internet and can access each other so easily, regardless of distance. I’m also a writer and photographer who wants to help others struggling with similar issues, and reading blogs like yours helps me to stay focused and motivated. A million Thank yous!!! Much love to you from Vermont!


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