I am a mess!

[Jimena]

I just soooo hate this stupid Crohns.

I had temp colostomy surgery in july 31th. Everything went well for about 4 weeks and then i got serious pains around my stoma and went to hospital and got diagnosed peristomal pyoderma gangrenosum, lucky me. Also they found out in surgery, that i have 50cm my ileum inflammed too. They started prednison, high dose and i am on it still now. Pyoderma got slowly better and i don't have cavities anymore and no pain around my stoma. BUT, after i slowly got down my prednison i am in flare right now.

I got pains on my right hand side on my tummy, very sharp pains and it feel on my side too. Very tired all the time (i have been back to work for three weeks now. Full time) and lower back pains and bloody mucus from my loop stomas "other" hole (what leads to rectum, so that bloody mucus is coming from rectum), and few times i have quite much blood coming out from my bum.

I use imurel, Humira (80mg every two weeks) and prednison dose is 10mg now. I hate prednison, i am NOT going to up my dose anymore. I have colonoscopy 12th december and then i have meeting with my GI and surgeon and we think what should we do next, if my terminal ileum is still inflammed i am going to ask resection. But could they do resection and i still have my colostomy? If my rectum is still inflammed too and they want to remove it do i got ileostomy then? This really suck. I am so tired of being sick and i had these nasty procedures and still nothing comes better.

With stoma, everything is fine. I like it and i don't want it reversed just yet cos i am really scared that everything will be even worse after that.

 

[Emma A]

How long have you got crohns?

 

[Jimena]

I was diagnosed 2002, so 11 years now. My first flare was when i was 6 years old, and doctors were thinking back then that i might have crohns and i was going to have scopes but my mom switched my diet to glutein free and my symptoms was gone so i never got those scopes.

I have been using Humira since 2007.

 

[Emma A]

wow, so pretty much along time and how did you find out you had it after that did you get another flare up? im changing my diet to gluten free now too, does it help or are you still eating wheat?

are you in a lot of pain now with your flare up? sorry about questions i just joined and have never spoken to anyone about my crohns or anyone with crohns for that matter.
i havent slept for days, my back is killing me too and my belly feels so bloated its really hurting my back!

i had blood coming out too, as you said alot! but that was a while ago and i havent had it since but the sharp pains are killing me! i agree with you on the steroids i was on a really high dose and when they started to ween me off them i had a flare up straight after when i was on a smaller dose, they also made me grow facial hair and gain weight and my face blew up :rof::lol:

i dont know what humira is? im on Pentasa 4000mg a day, i have crohns since last february so i'm only diagnosed a year and half and im 23 but i seriously hate crohns, its just horrible so i feel for you!!