Recently diagnosed

[crohnie2]

I have been recently diagnosed w/Crohn's disease. I have been put on a couple medications (and shots in near future), which I've been having many side effects to. Side effects include dizziness, fatigue, nausea, vomitting, back pain. Still feel very sick (after work usually sick for 3 hours each night). I have such bad stomach pains at night that sometimes I cannot sleep. I have other complications, including painful fistulas (which seem to be getting worse) and inflammation of the skin. What makes this all really frustrating/stressful is that my employer is very difficult to work with, when it comes to taking time off work for medical reasons. Also what I find to be really hard about this disease, is that it is very hard/akward to talk to people about. Most people don't even know what it is. I'd just like to see how you all deal with this, and if there is any hope?!

 

[My Butt Hurts]

There IS hope, C2. I have been in and out of remission since diagnosis, but most of that time has been close to remission (minus one reeeeally bad flare). It's a lot of trial and error, getting the right meds and stuff. Honestly, one of the best things you can do right now is use this forum to educate yourself, read other people's stories, and ask questions that you may have. This is an awesome place for information and advice.
What are you on now? What shots ae you about to start?
Welcome to the forum!

 

[crohnie2]

The shot is Humira. Not real excited about having to give myself shots though! Have you had experience with any of these shots? How long did it take before you started feeling somewhat better?

 

[Peaches]

:welcome: Crohnie2!! There is a thread here you could join - it is called the Humira club - it should answer a lot of your questions. I think the hardest part is getting the loading dose - then it gets better. Here is the link:

http://www.crohnsforum.com/showthread.php?t=6500&highlight=humira+club

This is an antiTNF biologic agent and people can have really good response to it. I use Remicade, which is mouse derived - but Humira is human derived - so less likely for allergic reactions (which is good for....you). Hopefully you'll have a great response to it. Maybe ask your doc if you could get your shots via nurse visits the first few times until you can get comfy doing it yourself. If you live with someone - maybe they could give them to you. My husband gave me mine (when I was on methotrexate) and I have given him flu shots in the past. Good luck and we are glad you have found us - let us know if you have any more questions!

 

[shazamataz]

Welcome C2! You've come to the right place. It can all be very scary and frustrating and everyone here understands!

 

[uab grad student]

Welcome C2! I am also on Humira... about to give myself my 2nd dose (two shots) tonight. They usually start you off with 4 shots, then taper down to 2 shots in 2 weeks, then one shot every other week. The injections aren't so bad, actually, in my opinion.

As for telling others what you are going through, I was very matter-of-fact with my coworkers and boss--I told them I was diagnosed with Crohn's and now that I am starting treatment hopefully this will have a minimal interference with my work. I think if you try to be positive when you tell them it makes all the difference--if your boss is open to it, maybe working from home some days would allow you to get your work done more efficiently since you could do it near the restroom, etc. I know eventually I am going to need surgery, but I didn't share that with anyone at my work... I'll deal with that situation when it comes.

Best of luck and again, welcome to the forum. These people are great!

 

[crazycanuck]

Hey C2 good luck with your Crohn's. This is an awesome place for info and I hope your into remission soon. Don't hesitate to ask any question no matter how big or stupid you may think it is.

Oh and I take my hat off to anybody who can inject themselves. I am so needlephobic I passed out from my last IV needle! HAHA! anyways goodluck with Humira and I hope that works well for you and hopefully sooner than later.

 

[RachLG]

Welcome Cronie2! I am new too - to the forum and to a dx of crohn's. I certainly know what you mean when you say most people don't even know what the disease is...I just told a friend about it over the phone and after explaining the whole thing, she asked "it's called 'chromes'" - I got the feeling she hadn't been listening to the explanation, but rather picturing a disease where you slowly become chrome plated

 

[imisspopcorn]

:welcome: Crohnie2

 

[Steve]

Crohnie2 - hang in there. I have also been reciently diagnosed and although i don't post much, i have been doing a lot of reading - dont be like me
You've come to the right place for support.
My recommendation to you right now is to make sure you are happy and confortable with your doctor. Having one that you can talk to and is responsibe to your calls and needs, is whats been helping me so much over the past few months.

 

[CrohnsHobo]

Welcome Chronie! Hope your can get some relief soon.