My story

Hey Yall,

My name is Shawn. I first started having symptoms of Crohn's in May of 2005 I had ate a bad chicken nugget and got food poisioning. I think I was around eighteen. I went to the doctor who blew me off and sent me home. That was the first time I had fecal incontinece just because the amount I was going. About September-October of 2005 I started having bloody stools for almost a month I finally got a doctor to understand and they scoped me. They came back in November saying it was Crohn's.

It has been very hard I lost 60 pounds in almost the first year. I weigh myself daily to make sure I'm not dropping weight. I went from 210 to 149. I'm back at 170. I have been on Remicade I can't take it I had an anaphylactic reaction to this in the clinic. My arm start hurting then swelled up and went up to my neck and started having problems breathing.

After that its been a touch and go type deal I tried methotrexate which suppressed me so much I was in the hospital with the flu (Had the flu shot) with double lobe pneumonia in septic shock. So I do a lot of burst therapy but I am getting worked up for Imuran now.

Funny thing is I'm a registered nurse I work in the cardiovascular intensive care and have taken care of a lot of Crohn's patients that have died due to infection. I am almost a nurse practitioner!! But even with this extensive background in the medical field I feel very alone and somedays it's hard just to get out of bed. No one really understands it and you get an "oh I'm sorry". I thought I would share and open up alittle to see if this could help. I welcome questions/comments and I know I'm a bad speller sorry!!!

Hello Shawn, welcome to the forum. I'm sorry to see you've had to deal with so much.

How are you doing at the moment? Any new symptoms or medications?

We can all understand how alone and helpless this condition makes you feel, and have almost all got fed up of the "I'm sorry" or "oh poor you, that's terrible" responses. It's perfectly normal to feel like that and it's ok. You aren't alone though, there are lots of people here who are going through similar things to you and know exactly what it can be like. Whenever you feel overwhelmed or scared, whenever you get bad days or you discover something new, or even if you just need a rant or maybe even somewhere to share the good days, we will be here. We always try to help and support each other the best that we can and you can be as open with us as you feel comfortable.

Hi shawnaus17 and welcome to the forum! Sorry for the late reply.

Has there been any update since you posted? I'm sorry that you had an allergic reaction to Remicade, that must have been terrifying. Have Humira and Cimzia been mentioned or tried? May I ask what dose of Methotrexate they started you on? I started taking it fairly recently and everyone on the forum has told me that its such a low dose yet for me I'm very sensitive to medications so that's why they started out on a low dose (.4ml then down to .3, then .2 and now back up to .3ml and may go up again in the future) with the intention of going higher in the future.

Keep us posted on how you're doing.