My life is Crohns
Tue, February 06, 2018 10:59 AM
Hi, i have had crohns since i was 12 and i am now 28. its always been a struggle and hard at times. this is the first time i have ever been on a site like this. crohns has been running my life for the 16 years and its been hard, between the hospital, test, blood work, IV's and hospital stay. i am very lucky that i have a amazing partner in my life and he is very supportive but sometimes i don't think he understands me. my family been there but they don't believe me sometimes when i say i am having a bad day. i just want to meet someone who knows what i am feeling and going though. i have never meet someone that has crohns, it would be nice to talk to someone who is like me.
thanks for listening
Vanessa
Joined Feb 6, 2018
Tue, April 17, 2018 6:28 AM
Reply posted for swagenman.
Vanessa,
This is literally my story. This is also the first time I've been on this site. We have some things in common. I was diagnosed with crohn's disease at 13 and I am now 31. I recently had an ER trip that turned into a disaster. I have not been able to leave my house or get out of bed in over a month. I miss life, going out, especially being able to exercise as I am too weak to even walk. I feel you on so many levels and I am desperately in need of people who have crohn's that I can talk to. Honestly, do you just want to talk? Can we even just message? I feel so isolated alone and confused with this disease as well. Anyway, if you ever want support, to vent or someone to talk to I'm here. You can message me. I'd love to talk.
Kat
NorthbergenKat Joined Apr 17, 2018
Thu, April 12, 2018 7:43 PM
Reply posted for Zepolv07.
Hi everyone, this is my first time on a support site like this too! I am getting emotional to know I'm not alone.
I was diagnosed in March 2008 at 20 years old. Bless you for fighting this since you were 12! It is frustrating because we don't look sick. I find I struggle with fatigue. If I go to a social outing for example it seems to take everything I have. Do you feel like that ever?
It breaks my heart because I don't want to hurt my loved ones or let them down, but i usually don't have it to give. I am able to work a full time job, but by Wednesday I am running of steam(my Wednesday Wall I call it). Claw thru, crash and sleep most of Saturday, and by Sunday afternoon (after a morning nap) I've got some fire.
I'm very interested if anyone else feels like this?
Joined Apr 12, 2018
Sat, March 31, 2018 4:03 PM
Reply posted for Zepolv07.
Vanessa,
You are my soul sister! I was also diagnosed when I was 12 and am 28 now. Everyday is a new adventure for us and we only know that since we live with it. People in our lives can only sympathize with us by what we are telling them what we are feeling or going through but they do not truly understand unless they are living in our shoes.
It sounds like you have an amazing support system but I understand 100 percent about how they don't listen to us sometimes. I am going through a flare up and my dad didn't get how I could go to work all day and not go out to dinner with him. I didn't have the energy to explain to him my reasons but when I felt better I did.
If you need someone to talk to, you can always reach out to me! This is the first time I have reached our to a site as well, I have only recently just done so because my mom moved to another state and she's the one who has always been by my side.
We're all here for you girl!
-Lulu
lpugh89Joined Mar 28, 2018
Tue, February 27, 2018 2:12 PM
Reply posted for Zepolv07.
You aren't alone, Vanessa. We invisible disease-havers need to stick together!
Joined Feb 27, 2018
Wed, February 07, 2018 9:33 AM
Reply posted for Zepolv07.
You came to the right place. You’ll will see people with all different degrees of Crohn’s. You have my sympathy getting it at such a young age. I got ulcerative colitis at around age 42. Nothing helped and I eventually had a proctocollectomy. Thought my problems were over, then I got Crohn’s. Its not as bad as the UC was but still awful. Was on Remicade for two years but it did nothing. Now trying Entyvio, I hope it works. Good luck to you.
charbsJoined Oct 31, 2016