Living with Crohn's Disease: My Journey and Recovery

I am 24, I was diagnosed with Crohn's Disease at 19. I was on various different medications, which didn't work. Then they put me on infliximab, which helped for about a year, then that stopped working. I was getting worse, losing weight, not eating or moving. (now 22) Then I went to the ER at the local hospital. They gave me a colostomy at first. They also gave me a blood transplant as my blood was low, this made me upset, as I had never had one before and I was very upset about what I was going through. After a while, they let me go home. But whilst at home, I fainted in the shower, and I felt very sad and was always crying and at one point wanted to die. The stoma was getting worse as well, it was infected and had white gunk coming from it. I went to the hospital again, they looked around inside whilst I was under, they said to my parents, if I didn't have an ileostomy that I would die. So my parents agreed. And when I woke up, I was in a lot of pain. And I had a line in my neck (which is still scarred). Which they use to check on my blood. I had a huge scar on my belly, and a scar a bit above where they used to put food in. I was eventually putting on weight, getting my color back and then they let me go home.



Now a couple of years on (now 24) I am normal and healthy and have gained lots of weight since I started at 6 stone, now am around 9 stone.

Hi LeaLea25, how are you doing? Happy Valentine's Day to you!
I read your blog and I can relate to you 110%. You are a newbie to Crohn's. I have been fighting it for 25+ years, and to be honest with you, I wish I had the chance to have my surgery within the first five years of being diagnosed. It would have saved me 20 years of needless suffering! When you first get the news you have Crohn's, the doctors basically hit you with different kinds of meds to see what will help you, and what does not. In that trial and error period, you go through all kinds of emotional drama. One minute you're fine, the next you're bawling your eyes out, the next you're ripping phone books in half! Been there, done that, got the T-shirt. It's part of the process of finding out what will work at keeping the Crohn's in remission. In a way, it sounds like you may have lucked out in the fact that they did the surgery, and it sounds like they have everything under control. Yes, you got the scar and all, but you are feeling healthy and strong and that's awesome! :) As I am writing this to you, I'm recovering from my surgery, wishing I would have done it a long time ago. My strongest word of advice I can pass on to you is you've got to keep your stress levels under control. There is always going to be stress in your life; it's when it dominates you to the point that it is all you think about... let it go. Walk away from that problem, talk to someone about it but get it under control. I used to stress out about things as well, a waste of time, and the damage to my health... not worth it. My escape is music. I write, play, and record my own music. It took my mind off the things that upset me, it gave me a way to channel that stress into something creative. I listen to classical music as well: Vivaldi, Handel, Bach, Widor. I push everything out of my mind. I don't think about my day and how that patient pissed me off. I close all that out so it's just the music I hear and nothing else. And I will sit there and breathe and just let go to the music. I know I'm running long here, sorry about that, but I'm speaking from experience. The sooner you learn to control your stress, the longer and better quality of life you will have! :) That's what it's all about. Best wishes...DG44