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Life with Crohns: My struggles


Sun, December 01, 2013 10:31 PM

Hey I'm Nick and im 21. Got diagnosed a few months back though i've been problems for 2 years now. I know I'm blessed that I have a more moderate form of Crohns but I need help.

The biggest annoyance is this chronic stomach pain. It feels like my intestines are being squeezed and twisted, and sometimes it gives me sharp pains. It's been pretty constant for the last year and half, affecting almost all my days. I can't figure out what is causing this, tho I KNOW when I get anxious it hurts alot more.

I have this bad pattern. When it starts hurtng more than usual  I say to myself "calm down calm down don't be anxious"....but I can't control my behavior and I can't control this pain. I know I need to let go and accept it because it is not so bad that it keeps me up at night. But its hard man. Sometimes I feel like the pain is a pack of wolves chasing me down, and I'm running out of breath.To escape the pain I fill my mind with thoughts, I start living less in the moment and this has led me to brief stretches of extreme sadness. Sometimes I wish I didn't downplay my crohns so much; I'm just young and I want nothing to slow me down.

Does anyone feel these things? Does anyone have any suggestions for the stomach pain? I love that this website exists. Share your story with me too :)

-Nick 

FPO njay023
Joined Nov 21, 2013

Thu, February 13, 2014 10:29 AM

 Reply posted for njay023.

The guilt is getting to me. I can't work anymore. Crohns, fibromyalgia, pancreatitis, liver disease, venous insufficiency, osteoarthritis. So I'm home all day. I try to keep the house clean and cook, but there are days I can't get out of bed. My husband works full time. My daughter goes to high school and has a part time job. And my son goes to high school. My husband tells me all the time that the kids need to help around the house. That they take for granted that I will take care of everything. But my guilt won't let me ask for help. I feel like I should be able to do these things. That I' must just be lazy. That I need to force myself to do it. But when I take extra pain meds so I can get things done, then I can't move for a week after and the mess piles up all over again. I don't feel I have the right to ask for help.  

FPO vicki b
Joined Feb 13, 2014

Wed, January 22, 2014 11:22 PM

 Reply posted for njay023.

Nick,
i was diagnosed with Crohn's at the age of 18, my second semester of college. The pain was horrific, but I got to a great gastroenterologist really quickly. My cousin had been diagnosed 6 months before me which helped speed things up for me. First tell your doctor everything even the emotional part. I always wrote down my questions so I wouldn't forget. It took me awhile to really accept I was so young and this disease was added to how busy I was and trying to explain to friends, eating out, not feeling up to doing things all really sucked. Being stubborn helps and fighting back helps you get through it, but at the same time give yourself a break give yourself time to be angry and frustrated but find an outlet for that, if you are up to it something as simple as walking around a track or some sport you enjoy. Give yourself a break from thinking about it find things that relax you. Weird I know but I use to imagine a feather slowly drifting starting at my feet and going toy toes just a relaxing technique. Above all know you are not alone there are support groups and plenty of people that will talk to you my email is shelian@ymail.com. Surround yourself with positive people those that refuse to understand forget them. The sooner you quit 
Worrying about what others will think or how they will react the better. I am now 45 it's been 27 years since diagnosed, had 2 daughters and 2 surgeries and been married 22 years. Life does go on and Crohns does change you but you can work around it. I wish you luck and pray your pain becomes more manageable. We all accept that we have Crohns in different ways and timetables, it took me awhile to accept things I was so angry and I still get frustrated but I get through.  Email anytime. 
Shelia




FPO shelian
Joined Jan 22, 2014

Thu, January 02, 2014 9:21 PM

 Reply posted for njay023.

Hi Nick, I completely understand what you are going thru and can relate 100%. I got diagnosed with Crohns 3 years ago and am in my mid-twenties trying to survive grad school. The cramping pain has crippled my life numerous times- exercising, going out with friends, spontaneous trips, school, etc. But I think you hit the nail on the head when you said that it is more mental than physical. Once we have this pain so many times, it really gets into the mind and it's hard to shake. I feel a little cramping pain (especially when I'm out in public) and my mind goes crazy and I panic, and the pain gets much worse.

Over the years I've managed to work on the psychological control of pain. There is a brain-gut connection and you can control it! Try repeating a mantra to yourself. I like to say "In this moment, I AM OK." Sure, I've had bad episodes in the past, but if I tell myself that in the present moment I am ok, and repeat the mantra I can usually calm myself down and the pain subsides. Also try focusing on the moment- be present where you are. Listen to the sounds around you, then identify them. Identify any smells, and notice your body (are you clenching your jaw? are your shoulders tense?). Use all your senses and try to calm yourself. I promise you with practice this will get easier and the pain will lessen. It takes time and a strong mind, but you can do it! :)

Take care,
Tina

FPO mishmish
Joined Jan 2, 2014

Wed, December 04, 2013 7:48 PM

 Reply posted for njay023.

dude i used to face same situation! horrible! :(...but i am positive about my disease and I will fight against it:)

FPO shashankreddy5
Joined Dec 4, 2013

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