Community Forum

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. 

Reply posted for alyssap24.

Hi Alyssa,
 Sorry to hear about your diagnosis. Know that you can overcome this. My husband was in immunosuppressants for 20 years. Had terrible flareups and reactions and eventually got colon cancer. Well, he is in remission. Completely changed his diet - lots of doctors do not support this. He has not had crohns or cancer for 10 years now. His colonoscopies are totally clear. His medicine is his food. He religiously has ginger juice, turmeric and probiotics everyday.

 Definitely voice concerns to you doc. Every person is different. Definitely research what works for you.. it is almost an allergy of the gut.

Reply posted for alyssap24.

Hi, I'm Aurora. I resonate so much with you. I got diagnosed with Crohn's like 2 weeks ago. I had abdominal pain and I was throwing up too. I don't have a GI disorder but I have a G-Tube to help me eat. I also had a fever. I always have constipation so my parents thought it was just constipation but I thought it was more than that. So my parents gave me a clean out (bunch of mirralax) to help me go poop. It took like 2 days to get down all of the miralax because I was so nauseous. After a couple days, I had blood in my poop. My GI said to go to my local ER. They said they could only find a ruptured ovarian syst on my right overie and they said that it was a stomach bug so they discharged me with a nausea medicine and said to come back if I have a fever. The next day, my GI said to come to UC Davis ER so we went. They admitted me and they did a bunch of tests and the blood test weren't normal. And eventually they diagnosed me with Crohn's Disease. I had my first infusion in the hospital like you. I had my second infusion like a couple of weeks ago. When I went for the second infusion, the blood tests were normal. I really don't want a flare again. 

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...