Dont ask me if i feel good...

[ChrisCrohns]

Because i don't remember how "good" feels. Im 28 now and diagnosed with crohns when i was 21. I have been on remicade for the past 5 years and i can absolutely say i feel better then i did a day before my first infusion. However i still with the symptoms everyday. The past 2 years ive dealt with fistulas and the surgeries to fix them (setons & fistulotomy).

This is my first post on a forum about the way i feel and i have to admit im tired of being sick and tired. I guess im in need of someone who can relate to how i feel because as intelligent as my doctors are about crohns they truly dont know how i feel everyday. To be honest i never know how im going to feel until i wake up that day. I wonder if my "good" days are what it felt like to be normal but i doubt it. Theres always symptoms one way or another everyday.

In 7 years ive met 2 people with crohns that i actually had conversations with. I think its time to meet more people like myself. I dont want to be told anymore "oh your fine" "suck it up".



Chris

 

[scottsma]

Hi Chris and welcome.

Sorry you have to be here, but you ARE in the right place for support,advice ,friendship and a good old moan if you feel the need.We've all been/are where you are,so we understand.I hope today is a "better"day for you.

 

[POTTYTIME!]

Hey chris,

it is hard for most people to be Sympathetic to what they cant see. They dont understand we hurt all the time but not anything that can be seen with the eye. This is the right place for you to get information, chat, or just vent.

I think all the doctors are the same about complaints, they hear it all the time and become tone def. I told my doctor's nurses just yesterday that I know the get tired of me calling but thats what I pay them for.

 

[ChrisCrohns]

Ty for the replies. I just got my infusion this morning and i definitely feel the difference. I swear the walk into the hospital feels like it takes forever till i get to my chair. When i leave i feel like i could run back to my car. The immediate difference is usually in my joints and energy level. Takes some time to feel the relief in my intestines. Glad to be here though!

 

[araceli]

Hello and welcome to the forum. I am glad you are feeling better. How often are you getting an infusion? Have they checked your remicade levels? There is the possibility that remicade is wearing off before your next infusion.

 

[Honey]

Hi there and welcome,
It is natural to be upset when people tell you how well you look and you are going through hell! They cannot feel the pain or the struggle of an illness that affects you daily. I learned to keep quiet with those who were not sympathetic, and tell how I really felt and discuss how I was with my very understanding Consultant. This forum is great for sharing experiences and getting support. So, all the best and let us know how you are
.:rosette1::welcome::rosette1: