My IBD Journey: Diagnosis Part 2!

18th March 2018

Hey everyone!

If you’re here, I’m assuming you’ve read Part 1 of my IBD Diagnosis story. If not you can find it here. This is the second half of my story, enjoy…

We’d heard from others that referrals to specialist doctors could take up to a month just to get one appointment and with the pain I was in and the weight I had dropped, it would’ve been really dangerous for me to have stayed this way for much longer. Luckily my mum had private healthcare cover with her work so I managed to get an appointment within a week. In the very first appointment I was told all my symptoms sounded like a form of Inflammatory Bowel Disease but they weren’t sure what type it was. Only the dreaded colonoscopy would be able to confirm it.

At this point, life was quite literally torture for me. I couldn’t even sleep to get away from it as I’d be woken up with the symptoms. Not being diagnosed with anything also meant I couldn’t take anything for relief as they were unsure of the effects it may have on my body. Being told that I had to have a colonoscopy wasn’t even scary as all I wanted was an end to the suffering I was going through, no matter what I had to go through to get it. I was booked in for this two days later so we could get a diagnosis as soon as possible and hopefully put me on some sort of medication.

I’ll spare you the gory details, although I do have quite a funny story. I was given a sedative and entinox to help me through the procedure as you have to be awake and it’s pretty damn painful. After coming out, the specialist doctor said I was “a pleasure to scope” and me, high as a kite, went “GREAT! I’ll put that on my CV!” resulting in my parents cracking right up. I can’t say the doctor reacted with the same enthusiasm though…

After making it through the whole ordeal my diagnosis was said to be a type of Ulcerative Colitis called Pancolitis. This was later double confirmed by the biopsies they took. So it was official, I had joined the chronic illness crew.

I was put straight on Prednisolone which is a steroid that is meant to calm inflammation in the body. It’s used as a short term solution whilst you’re waiting for proper treatment and I was meant to be on these for 8 weeks gradually tapering off of them. 11 months later and I’m still on them due to my body having a meltdown every time I try and come off of them. This is because I haven’t yet reacted well to any treatments.

Coming to terms with the illness was really hard. Going from a normal, healthy human to a shell of myself within a couple of months was terrifying. At one point I genuinely thought I was dying, it felt like my body was just shutting down and all anyone could tell me was that I needed to “chill out” and meditate. The best I can explain the disease for someone who doesn’t have it, is like having a constant severe stomach bug with all sorts of additional side effects, depending on the individual. The anxiety that comes with it can be pretty life-changing too, especially if you already suffer with it.

Being diagnosed with a lifelong illness is the most daunting thing. No one can prepare you for it and you never think it’s going to end up being you. As humans we naturally get through hard times by looking and hoping for the light at the end of the tunnel. We count on the day when our pains and worries will be relieved but there’s no guarantee with a chronic illness, which for me personally is what is so scary. There’s a chance of remission which I recently did a post on here but not everyone is lucky enough to reach it. Despite everything I am insanely grateful for the life I live and am determined not to let it make me bitter, but better.

This was only the first couple of months of my story. It’s been a year now since all of this started happening, my diagnosis and unfortunately I’ve been too unwell to work since July too. If there’s anything else you’d particularly be interested in me sharing – such as medication and effects on the body, how I’ve dealt with work/relationships and how it affects your mental health etc. then please let me know! Or if you’ve been through/are going through the same thing and need to talk, feel free to drop me a message, I know how scary it can be. I’m determined to get honest information out about experiences with this disease and my diagnosis was extremely quick compared to a lot of people.

Thank you SO much for reading and be sure to check back as I’ll definitely be uploading more posts like this!

I’m also taking part in the Crohns and Colitis WALK IT event on the 12th May and am hoping to raise at least £100 for the charity which will go towards vital research and giving more people the information and help they need with this disease. You can visit my JustGiving page here. Even a £1 donation or simply a share of the page would mean the world! Thank you.

’Til Next Time,

21 responses to “My IBD Journey: Diagnosis Part 2!”

  1. Jasmin N says:

    So sorry to hear this has happened to you!
    Coping with an illness that’ll be everywhere you go & with you for the rest of your life can be hard. I was diagnosed with rheumatoid (that I’ll carry for the rest of my life & it’s painful af at times) 10 years ago & I’m only now coming to terms with it.
    I wish you all the best for the future 🙂

  2. Bexa says:

    This sounds like such a tough illness to live with. I admire your honesty and bravery in sharing your story Alice. Your comment to the doctor after your colonoscopy was brilliant, you gotta keep a sense of humour in situations like that. All the best for your sponsored walk, I’m going to check out your page now ?? xx

    Bexa |

  3. Wow, really sounds so so terrible but im so glad you’ve shared this because it means we need to be grateful for the life we have and im glad that you finally got your diagnosis Good luck for the walk!xx

  4. It’s good that you’ve got your diagnosis as that’s a big part of the battle. Well done for sharing as well because it does help a lot of people out. Xx

  5. It’s ridiculous that we can end up having to go private because the NHS waiting list is so long, especially when you don’t have the time to spare. It’s really crappy having such an illness so young, you’ll have better days than others and all I can suggest is take advantage of them. Also I know how down not being able to work can feel as I’ve been off work since my surgery in Oct 2016. If you ever want to talk I’m here.
    Natasha xx

  6. Alice says:

    Wishing you all the luck in the world with your walk and I hope you get lots of donations, you deserve it so much! I’ve loved learning more about your diagnosis and your explanation of how it feels so have this illness, I definitely have a bit of a better understanding now. I’d love to read more posts around this, any of the ideas you mentioned would be great. Love you girl xx

    Alice |

  7. Kayleigh Zara says:

    I read the first part of your story over the weekend and my heart bled for you, having a lifetime illness to I know how alone and scared you can feel when going through finding out what is wrong with you! Best of luck for your walk x

    Kayleigh Zara ?

  8. I am so sorry you have to go through all this. Having a lifetime illness for sure is difficult and I don’t think many people are aware of what it actually means so it is great that you share your story. Finding out what you have must be super scary but it’s the first step to know what to do next. Sending you lots of love! xx corinne

  9. Sophie says:

    My God. I’ve just read both parts and I honestly don’t even know what to say. I’m so sorry you’ve been through all of this! It’s the worst feeling in the world when you feel like your body has given up on you. I’ve been following Hannah Witton’s journey too and I’m in awe of the bravery and openness. I hope you find something that works before you have to have your colon removed! ?


  10. Charlotte says:

    This sounds awful and I’m so sorry that you’ve had to go through this! It’s scary how we can go from being completely healthy and everything can change so quickly!
    Sending you lots of hugs xx

  11. Melanie says:

    What a fantastically honest post ❤️ What you have been through and continue to go through everyday sounds awful but it’s lovely to see you not only help spread awareness but also raise money for such a great cause.
    Thank you for sharing your story

    Melanie |

  12. Perrine says:

    I’m sorry to hear this, but I’m happy for you that you can finally put a name on your symptoms and can start getting better. You seem like a strong person, I hope you can get better soon and help others 🙂


  13. Gabrielle says:

    Oh Alice, all I want to do is come find you and give you a big old hug!! Actually loled at your response to the doctor too ? it’s great you can find light in the shit times – it can make it a lot easier to get through! I’d love to hear more about the impact on your mental health – I’ve been dealing with a lot of anxiety issues since I came out of remission from my epilepsy last year and although my physical symptoms have been okayish since then, it’s messed with my head massively!
    Great post lovely and you keep on soldiering on! ❤️❤️??

  14. MJ says:

    I’m sorry that you have had to go through this. The fact that you are able to share this story just tells me how brave you are and how you are willing to help others too and educate some of us who don’t know much about it. I hope this year is a better one for you lovely and that your body starts to respond well to the treatments. I can definitely say that l have learnt something today so for that, thankyou. All the best and thank you for sharing!

    MJ Xx

  15. Debrah McCabe says:

    I’m so sorry to hear that at such a young age, you have to start dealing with this. Terrible drag for such a young person!

  16. Julia says:

    This is a horrible horrible disease. I admire you so much for the honesty you write about and the courage you have to share your story. Sending you lots of positive vibes.

    Julia xx

  17. Haley says:

    Inspiring Alice. Throughout the whole series you constantly reaffirm positives. Your attitude to this very debilitating and painful illness is an absolute credit to you.

    We all dream of miracles and I sincerely hope yours comes soon, to get treatment correct that suit your needs and thus allows you some ‘normality’ to go about everyday life without pain or fear of needing the bathroom.

    Big love beautiful lady and thank you for taking the time to educate us on your world.


  18. Kelly says:

    Im sorry to hear about your IBD! I love your positive outlook with it all! I have IBS and find it a pain to manage and get so stressed sometimes!!


  19. Gemma says:

    I admire your honesty and bravery a lot! It’s horrible going through something like this, I could never imagine it myself but to see you sharing your story, I’m sure this will help someone else out there! Your positive outlook on this is great and I really wish you the best for the future.

    Gemma |

  20. You are soo strong Alice and it’s amazing that you’re trying to be as positive as you can be! I have so much respect for you and I do hope you receive the help that you need, and fast! I know I’ve already said it, but you are so brave for sharing your story online with us all. I know it will have helped others in a similar situation to you, to know that they’re not alone – which is also helpful for you as you know that you’re not alone either xo

    Char |

  21. Meg says:

    I’m so proud of you for sharing your experience <3

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