Life with Ulcerative Colitis

A few weeks ago I was asked by Dexterous Diva to write a guest post for her fantastic blog about living with a chronic illness, Jo who runs the site has endometriosis and the blog is really inspirational.  I was worried at first about writing about my experiences, concerned about how it would come across but once I started writing, it flowed pretty well.  I realised I was comfortable with writing about this disease because it was important to me.

I hope you enjoy reading the piece, if you have any questions or comments then please get in touch.

Ulcerative colitis is a chronic disease of the colon causing inflammation and ulceration of the lining due to an abnormal response by the body’s immune system. It’s an embarrassing illness that causes bleeding, diarrhoea and pain and massive tiredness.

I am 30 and have had this disease for 9 years now, I have been hospitalized several times and have to take daily medication. Ulcerative colitis comes and goes in waves, you can go weeks, months or even years between flare ups though I have been suffering with an ongoing flare for the last 2 years.

To look at me you would probably think I was a happy go lucky, slightly mad woman with flame red hair usually seen
guffawing my way through life. But inside I’m usually struggling. I’m usually feeling terrified I will lose control of my bowels, I’m sometimes uncomfortable with people coming too close in case I smell (I’m assured by my husband and friends that I don’t) Sometimes I’m smiling on the outside but inside I’m so fed up with dealing with this illness that I just wish I could hide away from life like a hermit in a cave (a cave with a flushable toilet!)

I spent my early twenties having kids, I have three children, now aged 11, 9 and 7. I was a stay at home mum and so dealing with my illness though difficult at times, was made easier by the fact that I was at home most of the time and could stay near a loo if I was having a flare up.

I then trained as a masseuse and a doula. I got a job as a breastfeeding support worker and loved it. I felt I had found my
calling in life. I loved being a support to women through their pregnancies, during labour, birth and in the first few months of their babies life. Then 6 months into my job I started with a bad flare up. I was bleeding very heavily and needing the toilet 20+ times a day. My job was to visit mums in their homes or at a children’s centre and the colitis was making this extremely difficult. I spoke to my manager who wasn’t particularly helpful and suggested I planned my days better. She didn’t understand that I couldn’t plan when I needed the toilet and that was the problem.

I was signed off work for four weeks and ended up in hospital again, during my stay and due to my shoddy immune system I caught flu and was bed ridden for weeks. It was at this time that I decided to hand in my notice. The stress of work and the thought of doing my job poorly and possibly letting people down was just too much.

I became very low and felt useless, worthless and broken.

Then my husband decided on a change in career, he had been an amateur photographer for years and decided he wanted to go full time. A year on and business was booming. Slowly, he started asking me to help him out and after a while I was taking on a larger role within the business and my self esteem was building up.

Now I run our blog, website and social media, I take care of marketing, editing and more. I’m learning to be a photographer and I’m loving life a little more.

Working for myself in our family business means I can work when I am well and rest when I am not. It means I don’t have to deal with office toilets and colleagues not understanding. I honestly don’t see how I could hold down a job working for someone else. When my flares are bad and I can spend 3 – 4 hours a night on the toilet and then cant wake up in the morning. I can go to the toilet up to 30 times a day. I can be so exhausted that I cant keep my eyes open. My joints ache horrendously and I have to take strong painkillers that make me dozy and uncoordinated. Hardly an ideal candidate for a job eh? But you know what? I’m a hard worker, I’m fiercely loyal and a kind, caring person. I’m always learning, a good listener and I love my job.

I have been very honest here, perhaps more honest than I am with friends and family because it’s hard to talk about. Its hard to admit that at times I hate myself, that I’m jealous of “normal” people, that I despise my stupid, broken body that needs drugs just to behave semi normally. But I think it is so important to get my message out because other times I am really proud of myself that despite this illness I have three beautiful children, I co run a successful business, I have an amazing husband and some wonderful friends.

I want to take time to mention my husband because his support makes my life a million times easier. He is so understanding, he loves me unconditionally, even when sometimes I don’t feel like I can love myself. He looks after me when I am ill and cheers me on when I’m well. He comes to doctors appointments when I’m just not strong enough to deal with it alone. He is always there to love me and hug me whether times are good or bad.

In the beginning I kept a lot from him, I was embarrassed and worried that he would be put off me, stop fancying me or even not want to be with me any more. Then I let him in. I explained what I was feeling like, physically and emotionally. I told him about it all, even the most embarrassing parts. And I found out that the old saying ‘a problem shared is a problem halved’ is so when I was asked to write this blog post I was unsure. Part of me wants to hide the illness and low self esteem away. I worry what people will think of me, that in some way my illness may look bad on the business. But after 9 years of having ulcerative colitis I’m done with being ashamed, I have done nothing wrong and I have an illness. Yes, it’s an embarrassing illness but if we never talked about these things, how can we learn to understand them?

Love Sam xx

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