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First few months with diagnosis

Hi all. I was diagnosed in February with crohns and I've been reading this forum ever since. It's been a huge help, so first I wanted to say thanks! I was diagnosed after about a year and a half of mild symptoms (diarrhea, weight fluctuations, etc) but after about two months of severe symptoms (erythema nodosum, joint swelling, constant diarrhea, vomiting, severe anemia, losing 40 pounds, fistula). I was admitted to the hospital for 9 days to get the symptoms under control, and was able to go home after I got my first remicade infusion. I'm also taking imuran and I'm on a predisone taper (down to 15 mg now).

It's crazy how fast the remicade worked for me. When I was admitted to the hospital I was doubled over in pain and struggled even to get up and go to the bathroom (except when the adrenaline from thinking I wasn't going to make it to the toilet kicked in, but the pain kicked in once I got there). They had me on a steady rotation of oxy, Norco, and dilaudid and even with all of that I still had pain sometimes. But within a day of getting remi I was able to stomach food and the pain lessened, and within a week I was only taking one oxy at night.

I'm still doing great compared to where I was. I'm walking daily and over the complete weakness and exhaustion I had. I've gained back 15 pounds and haven't had any diarrhea. But I'm 2 days away from my next infusion and I've started having more pain. It only seems to come on at night and it's not very severe but it has happened for the last three nights and I'm worried. I'm a natural born worrier though so I've been worried since the remicade worked that it will stop working just as quickly. Maybe after my infusion it will go away again? I guess the pain is still pretty fresh in my mind and I can't stop thinking it's going to come back.

Other than the constant worry I'm doing okay with the diagnosis. I'm 21 and a student, so I had to take this semester off of school, but I'll go back to classes over the summer as long as everything continues to go well. I have to say I'll miss being home and taken care of by my mom all the time (bless all parents who take care of us kids with this disease).

I guess I'm just looking for some reassurance and I've been thinking about posting on the forum for awhile!
 
Welcome. I think, for me , everytime it came close to another infusion symptoms would show back up for me. I hope that is what is happening with you
 
Welcome. For many of us, anxiety can exacerbate symptoms, so I encourage you to find ways to alleviate the constant worrying - First, express your worries to your doctor. Other than that - Maybe meditation, journaling, walking, yoga or other exercise as your body is up for it, talking to a friend or counselor, reading and posting here (or honestly, taking breaks from being here)...whatever is healthy and right for you.
I am a worrier myself, so I totally understand, and this is something I have to continue to work on. I hope you find some resources that work for you to help you find more peace.
And yes so many thanks to the amazing parents and caregivers!! Hope you are feeling better and able to be back in school soon!
 
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