6 February 2014

New beginnings...

When I was first diagnosed with Ulcerative Colitis it is fair to say it took a little while to sink in. In all honesty I had never heard of it before nor did I have any idea what it meant. I had no thoughts on what the future would hold as I didn't understand the chronic illness. Four, almost five years on and I am still learning new things every single day. It's a tricky condition to learn about as it effects everyone differently. The same rule also applies with Crohn's Disease which is closely liked and falls under the umbrella term of IBD. I hope this post will be a small guide for those who are newly diagnosed and looking for a little advice...            

My experience:

To bring you up to speed with my story even though I want to focus on my diagnosis.
Once upon a time, when I first started getting symptoms of Ulcerative Colitis I didn't have a clue it was all part of the bigger picture. I started nipping back and forth from the bathroom which without me realizing gradually over time took over my life. I had been to see a local GP about it and she was keen to refer me to have tests done (a camera on the inside) but like any young adult I was reluctant to go! I simple put it off, made my excuses and firmly shoved my head in the sand! *plonk*

I stupidly ignored the fact I was really really unwell and should have seen someone about it. I can't believe I let myself gradually get worse over the space of a whole year!!
I couldn't take the pain or bathroom trips any longer so against my own wishes I checked myself into hospital! I know the medical staff are trained on the skeletal form but I can't imagine what they must have thought when they saw me at only 6 stone walking in through those hospital doors.
The hospital staff were amazing, it took a little time for them to believe that I did not have an eating disorder but we got there in the end. I had a bundle of tests done and they did a marvelous job of fattening me back up. Which brings me onto my post topic.

My diagnosis:

I was in the hospital a total of two weeks, they were pretty clear from a few days of being there that they knew what my condition was. From what I can remember I don't think my consultant told me outright what they were treating me for, he only said I needed to have tests so that he knew he was treating me for the right thing. I am aware that many of those with Crohn's and Ulcerative Colitis can go for many years without having a proper, clear-cut diagnosis. I suppose because I had left things get so bad that my symptoms may have been glaringly obvious.

So the grand day comes when my consultant walks into my hospital cubical, pronounces that I have an illness called Ulcerative Colitis to which he then produced a leaflet with a bleak/ basic explanation. Before turning on his heels and leaving he throws in a little 'oh and you could be at higher risk of developing colon cancer one day'. Jeez thanks a bunch! In all honesty I read the leaflets but was no closer to having a real understanding. I certainly had no understanding of the severity, the seriousness of IBD or the profound impact it would have on my life.

Since then I have done my own research, mostly online and some through books. My mother is forever pointing out articles she stumbles across which mention the illness 'ww look at this'. Ha thanks mam. Please be wary that you can read many horror stories on the internet, I have stumbled across my fair share. I don't think you ever stop learning. You can learn from other peoples experiences though everyone has their own tales/ journey with the conditions. I wish someone would have sat down and spent more time with me when I was first diagnosed. It would have saved a lot of worry.

With this in mind I have asked a handful of people who suffer from Crohn's, Ulcerative Colitis, IBD and those indirectly effected by these conditions about their thoughts on the following question:

*What do you wish you were told when first diagnosed?* 

Myself? I wish I was told about the emotional mind-field that lays ahead. Dealing with the physical side of a chronic illness can ware on you but I had no warning of the avalanche of emotions that would come along with such a disease. I had no idea Anxiety was common among those dealing with such an illness. It beats you down, makes you tired and sad. Though it does bring its happy times too. It is such an overwhelming roller-coaster of emotions that tests even the strongest of characters!

I hope that by sharing the thoughts and opinions of those who have already been through the early days of diagnosis we can help the newbies. Those who are newly diagnosed and have no idea what to expect .
I'll include everyone's replies in a follow up post as the response I've received is way better than I could have ever imagined and far too many to include in this post.

**For part 2 - 'Your thoughts' Simply CLICK HERE**
ww how exciting ha.


  1. This is so interesting and informative! I hope you're doing well. I'm looking forward to reading next part. Thanks for sharing this!


  2. Got given the leaflet yesterday after endoscopy and colonoscopy.
    I ignored it for 6 months (with signs for years) and it was only going to give blood they told me I was heavily anemic.
    Now I'm trying to figure out how to make it work with an active sporting lifestyle :(

  3. When I was diagnosed it was Crohn's disease, but every time I see the specialist he calls it Crohn's Colitis, I bought books on diet and with hope that I would find an answer but nowhere calls it Crohn's colitis so I am baffled, also when I do go to the specialist they never answer my questions fully and usher me out with "just keep taking your medication" I also joined the NACC but didn't find a lot of help there either, so thankyou for sending me a friend request and here's to finding out more :)

  4. I've suffered with my stomach for 3 years, every time I went to my GP he simply said. "don't worry, its gastroenteritis. You've got nothing to worry about". After 3 years of battling to get my fitness up (I'm a cyclist who likes doing sponsored bike riding for my local cancer hospital) only to have it slapped back down by another bought of supposed gastroenteritis i went back to my GP and flukely saw a different GP. He listened, and without hesitation referred me to the gastro ward in hospital. It took no time at all for them to diagnose & treat me. Now I'm on the mend but I realise its hit n miss from now on. I'm currently suffering a flare up thanks to a garlic bread. Fortunately i have the support from the great IBD nurses in Sheffield.

    Sorry for the rant. I felt i needed to get my story off my chest and this blog puts my mind at ease


    1. You are more than welcome to have a rant :) At times it can be incredibly frustrating when not even doctors know about Crohns Disease and Ulcerative Colitis. We have a long way to go with educating the world about IBD but we will get there one day soon I hope Xx

    2. Fortunately i work on a hospital ward for pharmacy. I have plenty of supportive understanding colleagues.

      Always a bonus.