Crohn's Disease Forum » Your Story » My Crohns: Looking Forward To Happier Days

05-11-2014, 03:12 AM   #1
Triciaoc's Avatar
Join Date: Feb 2014
Location: New York
My Crohns: Looking Forward To Happier Days

Hi there!

I have been diagnosed with crohns for 4 years now and still battling to get it managed. Having been disagnosed my first year of college, I was often admitted at least once a semester and now having graduated a year ago I have been able to put a lot more focus and attention on getting it under control. I spent the first 2 years in denial that I was sick and certainly didn't accept that I was diagnosed with this disease I would have the rest of my life.
Last year around this time I was preparing for senior week of college a time to celebrate and enjoy my last week living in boston before retuning home and sadly it was overcome with a major flare up. I spent the first 2 months after graduation in bed taking antibiotics and steroids all to help the infection get better. After those two months we decided it was time for a heavier drug to be used and I was put on humira. It took a few weeks to really feel a difference but from July to December I could have sworn by Humira, it was so fantastic. Sadly now it seems my body is building a defense against the drug and we have concerns I may have lost the window of opportunity to use the drug. I was sent to the ER Thursday night and spent the evening undergoing the regular CT scans and blood work only to find out a major infection has yet again taken over a portion of my intestines. So here I am, once again on antibiotics and steroids and wide awake for another sleepless night.
I feel as though this disease has begun to define me and who I am and will be for life. At 23, I struggle to see past this phase. Every emotion possible comes to the surface in times like these and I am hoping this forum will shed light on happier days that I can look forward to ahead of me.
05-11-2014, 05:23 AM   #2
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Hello and welcome to the forum!

I'm sorry you've had such a tough few years . What are you and your doctors planning to try next? If humira seemed to work then maybe remicade or cizima would be good options?

I hope the antibiotics and steroids bring you relief soon, we all know how horrible the sleepless nights are.

Good on you for managing to keep going through college, that must have been really difficult so be proud of yourself.
I understand the feeling of the disease taking over, I'm 21 myself and can't remember feeling 100% well now.

It does get better though.. After 5 years, my crohns was put into remission last year and I've had one flare since. It's now my joint issues that are causing me problems, but I am still starting uni in September. So keep your chin up if you can, it might feel now like you'll never get anywhere or achieve what you wanted before diagnosis, but you can over come this. We will all do our best to help you and support you . Keep walking, there's light at the end of the tunnel.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-12-2014, 09:27 PM   #3
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

My Support Groups:
I'm sorry you are struggling again but valley is right and if Humira no longer works a similar drug might.

I know how you feel being young and feeling like the disease is your identity. It's definitely part of us but we are so much more than this. We just need to get past it and control it so we can resume our lives.

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