What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Things people don't usually talk about - highs and lows of upcoming surgery

I wrote this only yesterday, straight after receiving an email from my IBD nurse. I am pleased to say that within a few hours, I did feel calmer. I have no doubt that between now, seeing the surgeon and the surgery actually happening, I will experience many highs and lows as I consider my future. My aim is to experience these feelings and let the thoughts flow freely so that I give myself chance to process everything. I will not lose myself to those negative thoughts, but I will acknowledge them, and attempt to find ways to neutralise them.

Whilst I feel better now, I wanted to share the thoughts I had so that others can see, and know that this is normal. We are only human, and we're only equipped to deal with so much at one time. So, let's talk about the things people don't usually talk about. 
I know enough about me and my disease to be 100% aware of where I am on the journey. I have posted a few times over the last few weeks about the fact I will have to have surgery and return to an ileostomy again, it’s just a case of when.

I knew it was coming, and that it would likely be this year, it just was not clear yet how long I could hold it off for / whether I could access a drug trial to buy a bit more time.

Why then, does seeing it in black and white from my IBD team make me want to vomit? Cry even?

Surgery does not worry me, it never has. I have never felt any fear, nerves, anxiety about it, and have often thought that this makes me “weird”.

The fear IS here right now though. Not about the actual surgery, but about the bag which will now be a permanent fixture.

The first time I did not cope well, but I had only become ill two weeks earlier. I had been admitted to the hospital, diagnosed and a week later had the end of my intestine poking out my belly and a bag stuck on to there to collect the shit. I’d never heard of one, or seen one, but here I was living with one. I had lots of leaks and sore skin etc. I didn’t talk to anyone about it, frankly, I didn’t want to acknowledge its existence!

The second time around, I was good. I was pain-free for the first time in a long time, and I was extremely grateful for it! I always knew it was reversible though. This time, I know it’s not.

The things I hated are still prominent in my mind. I KNOW I must focus on the benefits, and that is what I will keep trying to do, but at this exact moment in time, whilst I am remembering leaks, burnt skin, itching like crazy and sweating in the summer, I cannot focus on the good.

I worry about my mental health, after having a really bad 16 months which I am only just beginning to creep out of. I am worried that something I would have been able to deal with in my past “stable” state, I will not be able to deal with now.