ulcerative colitis Archives - Wandering Everywhere

15 THINGS I WISH I’D KNOWN WHEN I WAS DIAGNOSED

Amy Aed — Wed, 10 Jun 2020 15:26:49 +0000

Coming to grips with my Crohn’s Disease diagnosis was one of the hardest things that I’ve ever had to do. I didn’t understand why this horrible thing had to happen to me, and I found it so difficult to cope with the hundreds of side effects that came with it. I didn’t know anyone else who had Crohn’s, and nobody around me quite knew what it was about either.

Luckily, over the past few years I have been able to both come to terms with and understand my diagnosis, and as horrible as it is, I am thankful that I am able to live a relatively normal life with it. About a year after my diagnosis, I began to join Facebook groups and support groups, and by talking to others who had lived with the disease for a lot longer than I had, I was able to learn about the best ways to manage it, what sort of diets to give a go, and how to try to live a normal life. Since then, I have written endless articles about Crohn’s Disease and how I am able to travel with it, and by sharing my stories I hope that I am able to help others that suffer with similar ailments.

Recently, I wrote a post in a Crohn’s Disease support group asking everyone what they wish they’d known when they were first diagnosed, which received an incredible amount of responses. From that, I narrowed down the top 15 answers to combine in this blog post. Why 15, I hear you ask? Because 15 is the age that I was diagnosed.

That everybody’s different and something that may work for someone else may not work for me.

– Rachel Macdonald

Employment law, i.e. what are my rights, the importance of vitamins and minerals (check iron, vit b12+folate, vit D), mental health support.

– Bob Hope

Make the most of the time you are, relatively, symptom free. I’ve lost too many years to this condition. I wish as a younger man I’d known what could happen in the future.

– David Buckle

I wish I had listened to my body more & not rushed back to work/‘normal’ life. I feel I wish I had been given this advice.
– Eilidh Whitfield

Don’t be afraid to ask questions – I find it helpful to have a written summary of the history of the disease (after 30+ years it’s hard to condense!); how things have been since last appointment and most importantly any questions I have.

– Gill Renouf

The pyramid of treatment – prednisone, azathioprine, 6mp, biologics etc. I had no idea what any of them were or what the side effects might be.

– Emily Bispham

I wish I’d pushed more for answers and stuck to my guns about my symptoms instead of accepting what I’m told rather than what I feel.

– Janine Akerman

I wish it had been fully explained to me that my whole lifestyle would need to be altered to ensure I could stay healthy and learn how to balance the needs of what my body now needed from me.

– Charley Drinkwater

Don’t accept medical advice from a physician who tells you it’s all in your head and thinks they know your body better than you do. Also, modesty goes out the door during colonoscopies.

– Daniel J MacDonald

That you have a choice you don’t have to do what the medical people say, your body you decide (but research the options). I was pushed about, hitting breaking point before they listened.

– Jo Dinsdale

Don’t expect the first thing you try to work, and don’t give up hope when it doesn’t! I was put on Azathioprine after a round of steroids and I had an allergic reaction to them and was put back on steroids for another few months. I didn’t realise there were other options, so I thought I was going to struggle forever. Now I’m on Humira and it works fab for me.

– Ella Gibbs

That just because you have a diagnosed disease, life doesn’t have to be boring and your dreams diminished. If anything, it gives you a boost to take life and run with it 100%, to make the most of it.

– Sarah Wingrove

Talk about it, don’t hide it, speak out loud about what you are going through. Don’t feel ashamed – it’s not your fault. You are stronger than you think you are! Just keep fighting and you win the war.

– Agata Thompson

I wish I knew about all the different diets such as paleo, AIP Paleo, gaps, specific carbohydrate diet etc…. before I had most of my large colon removed.

– Paul Bryan

Tell family & friends, be open about your health with them and send them info so they can better understand what you’re going through.

– Sarah Relf

I hope that this post has been able to offer some help to those with Crohn’s Disease, those who have a loved one with an autoimmune disease, and even those that knew nothing about it before this post – I sure wish that I’d had something like this when I was first diagnosed!

If you have any other tips or questions, please let me know in the comments below!

BUT BEFORE YOU DO – WHY NOT SHARE THE LOVE AND PIN THIS POST?

MY BIG SECRET: I HAVE CROHN’S DISEASE

Amy Aed — Fri, 16 Feb 2018 20:28:44 +0000

I have been sat in front of my Macbook for hours, wondering what to write and how to write this post, knowing that after years of wanting to talk about my Crohn’s to a wider audience, I still don’t have the words to describe everything. Now, I’ve come to the conclusion that if I don’t write this post now I’ll probably end up never writing it at all, and that would be an even bigger shame. Alas, here I go – I have an incurable, lifelong disease. And I can’t eat chocolate.

WHAT IS CROHN’S DISEASE?

To put it simply – Crohn’s Disease makes you sh*t. A lot. Classified as a form of IBD, your body is constantly attacking and trying to reject all the healthy cells in your body (from the digestive system to the eyes, mouth, etc) by mistake. No kidding. No one knows what causes it, but it makes your intestines inflame and tries to ruin your life. I try to stay away from Google as I’ll tend to come across a bunch of stories with titles such as “It’s not classified as terminal, but…” and people talking about how their lives are over and how they’ve developed bowel cancer and perforations and other horrible things because of Crohn’s. Honestly though, so long as you can cope with all the side effects (from hair loss to rashes, constant fatigue to malnutrition) and the like, you’ll be fine. It’s frustrating and exhausting, but liveable.

MY STORY

It turns out that I’ve always had Crohn’s, but it was only diagnosed in 2014 after I went through an insane amount of testing with almost all the doctors putting it down to stress. I was on a crap ton (haha) of drugs for a while, averaging at about 16 tablets a day for a bit, eventually having to leave school because my attendance was way below even 10%. I wouldn’t be able to summon the energy to leave my bed most days, as despite the medication and diet plan I was on, my body wasn’t absorbing anything and I was coming out pretty malnourished.

MY FAMILY THOUGHT I WAS GOING TO DIE

After a while of being high on meds, I stopped falling into decline and started steadying out a bit, until another bout of tonsillitis hit and my GP told me to take Erythromycin. I had such a big reaction to the medication that before I knew it I was hospitalised again, growing more and more ill each day. I tend to overdramatise a lot of things, but my family’s concern isn’t one of them – my mother recently confessed that she thought I was going to die during the worst week.

The medication made me see things and stop feeling things, and for a while I was numb and walked about in a zombie-like state. I can’t really recall what happened during those days, but I remember wondering why I felt so disconnected from the world, dropping to a weight nearly two stone lighter than I already was.

RECOVERY

Today I’m medication-free, but that doesn’t mean that I’m cured – Crohn’s is completely incurable and will never go away. I’m constantly in a state of uncertainty, never knowing how ill I will be the next day, which is especially annoying when I have a million things to do and yet can’t find the energy to leave my university flat.

Saying all this, I know several people with Crohn’s who are so much worse than me – constantly chained to cannulas, sent to mental facilities, and even ending their own lives. By these standards, I feel both blessed and a bit like a fraud.

THE POSITIVES

Even though I’ve spent the past few paragraphs talking about how debilitating Crohn’s can be, I want to stress that it’s not something that’s stopped me from living. John F. Kennedy had it, Eisenhower had it – if they can run a country with IBD then I damn sure can balance university, this blog, and exploring the globe. I wrote this post to both educate you guys and also if I can, inspire. Because really, if I’m out here with an incurable lifelong disease living a life full of travel, adventure, and good food, then you really do have no excuse.

LOOKING BACK

The worst part about my journey with Crohn’s (ignoring, you know, having Crohn’s) was that I was constantly turned away from doctors who didn’t even believe me. It took months of debilitating illness until one doctor clocked one of my notes and finally brought me in for testing. If by writing this post even one person reads my words and goes “wow, that sure does sound a lot like my sister” or the like, then it’s been worth sharing such a deep part of myself on the internet.