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New Crohns Diagnosis

Fri, February 23, 2024 1:19 AM

Hi,
My name is Alyssa and I was diagnosed with severe Crohns a little more than a week ago. I had been experiencing symptoms ranging from abdominal cramps to mouth sores and skin ulcers. I always thought it was my usual or my norm to get up and throw up every day for the past 2 years as I also have bad anxiety.
Initially, getting this diagnosis, I thought nothing serious of it but as the days went on, it's really starting to sink in. I am in so much pain and will be for the rest of my life. The doctors told me I had major depressive disorder as well. My main trigger isn't essentially food for my Crohns but stress and hello that's my life. I am kind of irritated that I was discharged from the hospital without any mental health resources. Who does that? Gives someone a serious diagnosis like severe Crohns and pretty much has them deal with it themselves. They gave me my first infusion of Avsola in hospital and sent me home with steroids. The side effects of the steroids are no joke and I seriously want to be done taking them. I am due for my next infusion but the doctors keep giving me the run around so I don't even have it scheduled yet. It's been almost 2 weeks and today I am having a really bad flare up. My abdomen has been cramping all day and I just now started having diarrhea every 20 minutes or so. My stomach is upset, I threw up once and my mouth sores are starting to reappear and become tender again. I feel very short of breath and hope my anemia isn't coming back. Not to mention I now have a sore throat and hope that I'm not getting sick with my weakened immune system. I feel like I have no support with what I am going through whatsoever so here I am. Is it normal to have symptoms after having one infusion? Does that mean the infusion isn't working for me? Does the bone and joint pain ever subside? How can I find adequate mental health? Anyway, that's my current story. Looking forward to reading how some of you have dealt with all of this. I am just so tired of feeling guilty and like a burden to my family. There is so much more I want to say but I'll leave it at that.

alyssap24
Joined Feb 22, 2024

Tue, March 05, 2024 3:31 PM

Reply posted for alyssap24.

Alyssa,
I'm so sorry for all you're going through. Steroids are the pits- they work wonders, very short-term for severe IBD, but side effects can be horrid. I see Avsola is a Remicade biosimilar, but Remicade is the oldest IBD biologic, dating back to 1998. It's in the TNF-α inhibitor class, and there are MUCH newer biologics now. Avsola, like most biologics, can take some time to work, so you might want to give it a few months. In any case, ask your doctor(s) about Entyvio, Rinvoq (a daily pill), Skyrizi, and Stelara. I hope you get some relief soon...

MrNews
Joined Mar 5, 2024

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