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Dec 6, 2011
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Hello All

My name is Ryan and I was diagnosed with Crohn's almost five years ago at the age of 27. After a remission period of about a year and a half, I flared up again in summer 2008. While in the process of receiving treatment, my grandmother passed away and the stress involved put me over the edge. About a week later in Oct. 2008, I left work in more pain than usual and went to the ER. After the worst ER experience imagineable that totalled 18 hours, I was admitted and told that I had developed an abcess in my small bowel. So they treated me with all the usual suspects, put me on a pik line for food and meds, and had me there for 13 days before being released.

About three weeks later I was back in, this time over the Thanksgiving holiday, when the abcess returned after all my antibiotics were used. They inserted a tube to drain the abcess and it was another 10 days I was there. This time they told me I would need a resection that they tried to schedule for Christmas time. After fighting with the doctors about spending another holiday in the hosptial, it got pushed back to late January of 2009. The surgery and recovery went well. I started humira that April and everything was good until about a year and a half ago. Since then I have been having arthritic symptoms, constant diahrreah, fatigue, weight loss and dehydration.

I'm still taking humira but I don't feel it's working 100 percent and I'm growing more and more depressed because of a combination of the symptoms and what it has cost me over the years personally and professionally. Being single and living alone makes the depression worse at times, but what has bothered me the most is how this condition has essentially cost me any chance of advancement at work. From being out for four or five months straight to the everyday Crohn's related problems, to the difficulties of maintaining focus and function, my place at work feels permanently set for me at the bottom. Since being denied all advancement opportunities I was being lined up for, my bills continue to rise, my stress continues to rise, my income feels as if its decreasing and I may have to move back home with my parents. Of course there's no jobs out there and I don't want to risk losing my benefits bu I used to try to look at only positives as much as possible, but over the past few years I've been innundated with negatives without anything to feel happy about.

They way things have been, I feel as if I've missed out on a lot that I won't be able to get back. Worrying about your health is stressful enough with Crohn's but when it takes over your life and restricts your personal and professional growth, it makes every day that much harder. I had always believed when people said 'your time will come' but now, I don't believe much of anything.
 
Hey Ryan and welcome
I'm so sorry that you are going through this. Crohn's can be a difficult at the best of times but when we feel like all the situations in our life are snowballing it can take the strongest person down. I have CD over 20years and i can fully relate to all those feelings but I equally have to tell you that good things have happened too, things that I never thought were going to happen for me. I lost job opportunities only to have something more suited come up later, I lost relationships to find that the person I was dating was selfish and nowhere near understanding of my needs to finding a partner who's there for me, I've lost people who I thought were my friends to end up with the best friend I ever had.
I think that maybe moving home (for a while) is not such a bad idea, sometimes we just need to reset ourselves, rest, get looked after, talk to family and to others who know what we go through.
All I'm trying to say is, that we spend so much time worrying about everything else that we forget to worry about us, we forget to let ourselves off the hook and enjoy life.
Your time will come!!!

Take care honey.
Gwen xxx
 
Hi Ryan and welcome to the forum. I am really sorry that you are having such a bad time of it. What have the docs said about your symptoms? Is Humira the first thing you have been put on? What other medications if any have been tried? I can understand what you mean about your personal life - when I first met my husband I was doing really well and looked great, I always worried how things would go if I had a flare and he realized that me and the loo became best buddies. Crohns is not a 'clean' disease that smells like roses. Luckily he understood and has been wonderful for the last 8 years, I guess I'm saying that there is alwas a chance that you can meet somene just as great. When it comes towork it sounds like descrimintation as you can't help it that you have an illness, however in todays climate no one really cares about this as if you don't like it they can tell you to naff of as there are plent of people ready to take your place. It's a horrible situation to be in, all I can say is that I hope that the right medication will be found for you and things will start to get better.
 
I was say that it could always be worse. I have my own little pity parties every once and a while and wonder why me and why this and why now and this isn't fair and I just want to be normal.. but then I think of my mom who had leukemia, the doctors gave her a year to live. She was ready to give up until she saw a boy coming to visit his grandma at the hospital she was in and he was graduating that day and she decided she wanted to see me and my younger brother graduate. With her determination and the right medication she has been in remission for almost 14 years. So truthfully even on the worst of days it could always be worse. At least you have a family that is willing to help and be there for you.. as hard as that is it is true you need to do whatever you can to look after yourself before you can think about anything else.
I know not much of anything we can say will help just know that we have all been there and I wish you the best of luck because life is really good and unfortunately you were dealt with crohns but everything happens for a reason and maybe you could handle it better than someone else!!
Anyway i will quit rambling but take care of yourself... be selfish! And try as hard as you can to stay positive!!!

xxxx
 
Thank you for your kind words. I've been on pentasa, prednisone, and a few other antibiotics over the years in addition to humira. But the doctor's are trying to see if bumping my humira dose up from every other week to every week. Its working somewhat. As for work, they see how me aggravated and mopey but it doesn't seem to matter why just that I'm like that. I spent most of the last year jockeying for potential positions, all to blind eyes. But I need my insurance and can't complain or take risks. I'm worried that once I lose it, I won't get covered again because of preexisting condition. I spend too much time worrying about that because without it, a hospital visit is going to put me into it for tens or hundreds of thousands of dollars.

I know you in the UK have your issues with the NHS, but you should be thankful that getting sick won't put you into bankruptcy court.
 
Thanks Jamie. You're right, its just difficult to explain to people the issues you face with this, especially to people who don't understand the condition or just a simplified version of it.
 
I hear you, losing cover is not something you need right now. I hear it's crazy money for health for you guys. We pay here in Ireland also although not anywhere near as much but it can cause a terrible stress. I'm a stay at home mum and I worry every time a bill comes in as my hubby is already paying for everything.
I will be praying for some good luck for you, they are just nasty people in your job and they don't know a good worker when they see one.
Gwen xxx
 

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