My IBD Journey: Diagnosis Part 1!

My IBD Journey: Diagnosis Part 1!

Hey everyone!

Being completely honest, the last year has been the worst of my life because of my health. You can read some other posts I’ve done on it here and here but I’ve decided I want to and am ready to speak about it properly on this platform now. Mainly for the reason that it is so deeply misunderstood by people who don’t have it. Starting with my diagnosis, I’ll be talking about my journey with Ulcerative Colitis, a form of Inflammatory Bowel Disease (IBD) alongside Crohns. I’m not sure where this little series will go yet and how much information I’m prepared to share about something so scarily personal but I’ll figure it out along the way.

I’ve been so inspired by Hannah Witton recently that I wanted to share my story too. Her YouTube channel is here if you wanna check it out! She suffers with the same disease and has had her bowel removed and a stoma fitted which is something I might also have to have soon. This is due to how widespread the disease is in my bowel, the severity of it and my body not yet responding to any medication. I have always been an “all or nothing” kinda gal so I guess this disease is following in those footsteps… but anyway. I hope you learn something from reading this!

February 2017 started admittedly quite stressfully. I’d just had a car accident at the end of January which was a huge trigger for my anxiety and it was coming up to a year since I dropped out of uni and I still wasn’t any closer to knowing what I wanted my next step to be. I was also really unhappy in my job so I decided to book a week off of work and have some time to myself to chill out. In this week I went to visit one of my best friends in Plymouth for a couple of days and had the absolute best time. We went for rainy and windy walks along the hoe, got hot chocolate and fish and chips and went to pub quiz night. When I came back to Bristol I got my beautiful medusa tattoo piece done and spent a few days with Jake.

On the Sunday before going back to work, I started to experience really bad abdominal pains and no food I tried to eat was agreeing with me so I just assumed I had a bit of a bug. This carried on for around a week until the Saturday after I was up all night in excruciating pain and nothing would make it go away. I was up back and forth to the toilet thinking I was going to be sick and had to have 5 days off of work because I could barely eat anything without it going straight through me or feeling like I was going to throw it back up. It settled enough for me to go back to work but I still had to be extremely careful about what I was eating, I was living on dry and bland food and my boyfriend eventually forced me to go to the doctors and get checked out.

I got told it was stress-caused IBS and advised to start meditation and basically try to chill out. I had blood tests that showed inflammation in my body but my doctor wrote it off as the common cold I was battling, little did they know. For a little while I was trying everything I could to make myself feel better, I found a new job, handed my notice in and signed up for a gym membership near to my new work. I started trying to eat a lot better too and alongside going to the gym I started to feel a lot better mentally but unfortunately my physical health issues kept getting worse. I started passing blood and was in a lot of pain every time I ate, no matter what I ate. I was also being woken up at several points throughout the night desperately needing the toilet, it was like my body was just rejecting food.

Back to the doctors for a second time, I explained all the things I’d done to combat this “IBS” and how these new symptoms had arisen. I was again just told I needed to try harder and prescribed something called “Mebeverine” to take 20 minutes before eating which would apparently relieve my pain. I came out of the appointment and burst into tears as I knew there must’ve been something more severe going on but I didn’t know what, completely unaware of IBD. Still, I continued with this new medication and admittedly it did help the pain I was experiencing but at this point, my body just seemed to give up on me. I started my new job which I was absolutely loving but by this point I was up pretty much every hour throughout the night in pain/running to the toilet/feeling really sick. I was barely eating but still taking 6-8 immodiums every day just to make it through.

I stuck it out for 3 and a half weeks in my new job getting up at 5am 5 days a week with these symptoms and dropped 18 lbs in that time. It got to a point I could barely even keep water in me and I nearly collapsed in work. I called the doctors straight away and demanded an emergency appointment and they fit me in the next day. I was a mess, my face gaunt, my eyes dark and they finally offered me a faecal calprotectin test. I got a call a few days later saying I needed to be urgently referred to a gastroenterologist as my inflammation was sky high. I was scared but relieved as something was FINALLY being done and I thought I would be feeling better soon.

Well that is the first part of my IBD story, you can find part 2 here. Be sure to pop in your email address at the bottom of my page to subscribe for email updates on new posts!

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 absolute world! Thank you.

’Til Next Time,
BTB Xx
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51 Comments

  1. Miranda
    16th March 2018 / 8:30 am

    BIG HUG & LOVE YOU LOTS XXX

    • blacktulipbeauty
      Author
      4th April 2018 / 2:07 pm

      big hug and love you lots too xxx

  2. 16th March 2018 / 6:27 pm

    Oh Alice, last year sounds like it was god damn awful! I can’t believe they told you to MEDITATE!! What the actual fuck?! I lost a stone last year after contracting hepatitis E (not the grim kind you get from needles or anything else unsavoury lol) and my symptoms were really similar, but not to the extent of yours. I can’t imagine having to live like that all this time – a couple of months was bad enough! So proud of you for sharing and can’t wait to read your next post ❤️❤️❤️

    • blacktulipbeauty
      Author
      4th April 2018 / 2:09 pm

      Hahaha I know! Unfortunately it seems to be the norm with this disease, they have a certain list they kind of have to check off before referring you properly! Not the best as you can fall so ill within that time but yeah. It’s not the most fun I’m not going to lie but you just have to deal with it! Thank you Gaby ❤️

  3. 16th March 2018 / 8:04 pm

    Such a brave thing to post but such a horrible thing to go through, hope you’re doing ok x

    • blacktulipbeauty
      Author
      4th April 2018 / 2:10 pm

      Thank you so much for reading, I’m getting there! x

  4. 16th March 2018 / 8:07 pm

    Thank you for being brave and sharing your story. I didn’t know much about IBD and now I feel more informed so thank you for educating me and raising awareness!

    • blacktulipbeauty
      Author
      4th April 2018 / 2:10 pm

      No problem, thank you so much for taking the time to read it! X

  5. 16th March 2018 / 8:07 pm

    This sounds horrendous!! I have IBS and I find that hard enough to live with, let alone this! ? I hate how doctors just brush you off, especially when you know it’s something serious! I can’t wait to read the next part and I really hope things get better for you ? xx

    Jade | jademarie.co.uk

    • blacktulipbeauty
      Author
      4th April 2018 / 2:12 pm

      Yeah unfortunately it seems to happen a lot as IBS is so common, doctors seem to put everything in this area down to that too! I always knew it was something more than that though, I was in too much pain for it to be IBS! Thank you so much ❤️xx

  6. 16th March 2018 / 8:23 pm

    You are so brave for sharing your story Alice ?. It sounds like it has been such a tough year for you. I’m glad you eventually got the right diagnosis and the doctors took you seriously. I really hope things improve for you lovely ? xx

    Bexa | http://www.hellobexa.com

    • blacktulipbeauty
      Author
      4th April 2018 / 2:12 pm

      Thank you so much ❤️ It really has but I’m still going! Hopefully things will be looking up soon Xx

  7. 16th March 2018 / 8:34 pm

    This sounds like such a frustrating situation to be in, but even though you’re not out of the woods yet it’s so good to hear you finally have an answer. You’re so brave to be sharing your story, experiences and raising awareness.

    Emma x
    emmarollason.com

    • blacktulipbeauty
      Author
      4th April 2018 / 2:13 pm

      It really can be, it was definitely a relief getting diagnosed but also really scary! Thank you so much for reading! X

  8. 16th March 2018 / 8:35 pm

    Well done for sharing. Such an important topic. A friend of mines has IBD too and I know from her journey how awful this condition is. Hugs xx

    • blacktulipbeauty
      Author
      4th April 2018 / 2:14 pm

      Thank you very much! It is definitely underrated, I wish her well Xx

  9. 16th March 2018 / 8:43 pm

    You are so brave for sharing your story! It sounds like you’ve been through hell this last year and I pray it gets better for you! Posting this will raise awareness of this illness as most people won’t know the symptoms! I’ll sponser you when I get paid!
    Liz xx

    • blacktulipbeauty
      Author
      4th April 2018 / 2:15 pm

      Thank you so much Liz, it hasn’t been too fun I’m not going to lie haha! I hope people start to see how serious a condition it is! That’s so kind of you, thank you ❤️ Xx

  10. 16th March 2018 / 8:51 pm

    Well done for sharing it can be really scary. I’m sorry your suffering with, I have a friend who suffers from the same. I’m glad you’ve got a diagnosis though, as it can be worse when you just don’t know what’s wrong with you and you can start to doubt yourself. I hope they can find a way for you to live as pain free as possible and you’ll be able to live a relatively normal life again.

    Natasha// natashaleah.blogspot.co.uk

    • blacktulipbeauty
      Author
      4th April 2018 / 2:16 pm

      Thank you so much! I’m sending my best wishes to your friend. Hopefully it won’t be too long until I am back on track, it feels like it’s been a long time since I’ve felt somewhat normal X

  11. 16th March 2018 / 9:13 pm

    Well done for being so brave to share your story. Really hope you find a way to get better ?

    • blacktulipbeauty
      Author
      4th April 2018 / 2:16 pm

      Thank you very much! And thank you for reading x

  12. 16th March 2018 / 9:44 pm

    I’ve never really heard a lot about this disease so it’s really great of you to share such a personal story, will definitely be keeping an eye out for your future posts and I hope you raise your target!- https://sophiehearts.net x

    • blacktulipbeauty
      Author
      4th April 2018 / 2:17 pm

      Thank you so much, I’m glad this post has educated you a little! X

  13. 16th March 2018 / 10:22 pm

    Thank you for sharing your story I’m looking forward to reading the rest of the series and learning more about IBD as my knowledge is fairly limited.
    Great post ?
    Melanie | http://www.frasersfunhouse.com

    • blacktulipbeauty
      Author
      4th April 2018 / 2:17 pm

      Thank you so much for taking the time to read this post! I appreciate it ❤️ x

  14. 17th March 2018 / 8:10 am

    I really admire you for sharing your story. I too have IBD and people really do not understand it. I wish you the best on this journey and i look forward to coming along x

    • blacktulipbeauty
      Author
      4th April 2018 / 2:18 pm

      It’s a very underrated illness! Wishing you well x

  15. 17th March 2018 / 9:39 am

    Hey, it requires immense courage to share your trauma with others. Thank u for doing that. The problem these days is that it takes a lot of time for the right diagnosis. Hope things improve for u soon ?

    • blacktulipbeauty
      Author
      4th April 2018 / 2:19 pm

      Thank you for your kind words and for reading! X

  16. Gemma
    17th March 2018 / 12:07 pm

    I love your courage here, thank-you for speaking out. After following Greg James’ journey recently, we need to be more informed about things so we can be understanding and helpful. The major problem is that it takes forever for a diagnosis, also I never knew you knew of Plymouth! I used to live there up until last year, it’s such a lovely place. Thank-you for writing about this and would love to see where this series takes you.

    Gemma | https://anoceanglimmer.wordpress.com/

    • blacktulipbeauty
      Author
      4th April 2018 / 2:22 pm

      Thank you for reading! Definitely, knowledge is power as they say. Yes haha Plymouth is a beautiful place, I know quite a few areas in the Southwest as my Grandma has lived down there for years!

  17. 17th March 2018 / 2:44 pm

    I can’t believe how long it took them to actually take things seriously! I’m so glad you’ve started this series, it’s nice to learn more about your journey and things in more detail. Side note, your time in Plymouth sounded bloody lovely! Fingers crossed that soon you’ll be able to feel much better and go on lots more amazing adventures, I’m so proud of your constant strength x

    Alice | http://www.accordingtoalicex.com

    • blacktulipbeauty
      Author
      4th April 2018 / 2:23 pm

      I know, unfortunately it is like that with nearly everyone and mine was actually a really quick diagnosis! Thank you so much for reading, I appreciate your support so much ❤️ you’ve been such a great pal X

  18. 18th March 2018 / 2:26 pm

    You are amazing for sharing this lovely! I am still so nervous to talk about my illness but I think I should share as reading this has helped me feel less alone! I really really hope you get better soon and they work out the best possible treatment for you! I will always be here to support you and I cant tell you have much I appreciate you sharing this!

    Emily xx

    http://www.isobellejane.com

    • blacktulipbeauty
      Author
      4th April 2018 / 2:26 pm

      Thank you so much! Only share it if you feel comfortable to, it felt a bit like a weight was lifted when I shared this as I felt it eliminated a lot of judgement/mystery/questions behind me not working/progressing like people my age. I appreciate your kind words and support so so much! ❤️ xx

  19. 20th March 2018 / 2:40 pm

    You are such a brave woman! I’m so sorry you’ve had to go through this. But it’s so important to speak about it and I think you’re doing a great job raising awareness. Keep your head up, everything will work out in the end.

    Julia xx
    theglassofclass.com

    • blacktulipbeauty
      Author
      4th April 2018 / 2:27 pm

      That is such a lovely thing to say, thank you! I believe it is important too, the illness doesn’t get the attention or funding it needs and it’s so underrated. I do hope so! Xx

  20. 26th March 2018 / 1:48 pm

    It’s soo incredibly brave of you to open up and share your story with us – I’m so sorry it took such a long time for you to find out exactly what was wrong, I can only imagine the severe pain you’ve been and are living with on a daily basis. My heart completely goes out to you and I really hope you receive all the treatment and support that you need! You’re doing the walk on my birthday and I’ll be thinking of you on that day – I will also hop on over to your page and donate. Sending lots of virtual love and hugs your way Alice xo

    Char | http://www.charslittleblog.co.uk

    • blacktulipbeauty
      Author
      4th April 2018 / 2:29 pm

      Thank you Char, it was a while but I know a hell of a lot of people waited way longer than I did! I appreciate your lovely words and support so much! Aww that’s lovely! I hope you have a brilliant birthday and thank you SO much for your donation! ❤️ Xx

  21. 28th March 2018 / 4:37 pm

    Wow, you are so brave! It sounds horrendous but you are a fighter so don’t let it get you down! Here if you ever need anyone to chat too or moan too haha xx

    Francesca | Francesca Alice ?

    • blacktulipbeauty
      Author
      4th April 2018 / 2:29 pm

      Thank you very much for reading! It’s not the best but life goes on. I appreciate that so much! ❤️ Xx

  22. Anu
    30th April 2018 / 10:12 pm

    I’m so sorry that you’ve had to go through this! I’m so glad that you’ve decided to share your story and make it into a series on the blog as people need to be aware of these illnesses and I’m sure your posts will help others! Xx

    Anu | Based On blog

  23. 12th July 2018 / 8:56 am

    My mum has recently been diagnosed with ulcerative colitis and I’m trying to learn about it as much as I can. I’m sorry about what you’ve been through – I have seen how mentally draining it can be waiting for the right diagnosis / medication etc, and I’m so happy that you have stuck through it, come out strong and you are writing openly about your experience! Sending love ?

    Beka | http://www.bekadaisies.com

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