Recently Diagnosed with Crohn's at 20

2 min read

I was diagnosed with Crohn's disease two months ago (March 3rd) after an unexpected ER and hospital visit.

It all felt very fast and I never imagined I would receive a diagnosis like this. My grandmother has Crohn's (she has an ostomy bag) so I had heard of it growing up, but I had no idea it could be hereditary or even what it really was. I've also struggled with fatigue for many years, but thought it was because I was a teenager. I remember suddenly losing a lot of weight around 8th grade, and I've never really been able to gain weight since then. Now that I’ve thought about it, I realize there were other symptoms as well. I definitely regret not acknowledging the stuff my body was trying to tell me until it got to this point.

My diagnosis has me feeling anxious

I still haven't been treated which has caused me to be pretty anxious. My calprotectin levels are 4,700 according to the test I did about a month ago. However, other than the mild ongoing pain and pretty bad fatigue, I feel normal. I'm hoping to start Entyvio in the next two weeks.

Luckily I'm not in school this semester for reasons unrelated to Crohn's disease, so this is the perfect time for all of this to happen. I’m actually transferring to a new college, so it will be interesting trying to make new friends, navigate the campus, and deal with this new medical stuff at the same time. I plan on using the accommodations my school offers, so hopefully my professors will be understanding.

My symptoms make sense now

I just feel so anxious that I could be sent to the ER at any moment, and it’s all I can think about. My mental health has taken a pretty bad hit due to this, and I don't know anyone around my age dealing with this. This diagnosis is a bit of a relief though, because I thought everyone was this tired but I’m just terrible at handling it haha

I’m curious if anyone’s in a similar situation or has ever experienced something similar, also does treatment really work? Am I actually going to see a difference? I feel like I’ve had symptoms for so long that it’s normal for me. I’m curious to see what kind of person I’d be if I lost even half of this fatigue lol

Thank you for reading :)

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Vern Laine Moderator & Contributor
Hi @grastow. I too was diagnosed at 20 and I feel your pain, I totally understand. For me I was diagnosed in 1988 so treatments at the time were limited. Nowadays with biologics, the chances for remission and living a relatively flare-free life are high. My symptoms were sudden, drastic and painful. One day I was me and the next I was in severe pain. I eventually lost a total of 60 pounds at my worst. Biologics in my opinion are a "godsend". I was on Remicade for 8 years until my body became immune to it. I was on Humira injections for a couple of years and am now on a Humira biosimilar called Hadlima. It's been great compared to all the other meds I've been on for the past 3 decades. I have totally seen a difference. I have an ostomy now because of perianal disease, but I totally can relate to your experiences. Let us know how you get on. Vern - Crohns/IBD Team Member
foolishness Member
Hi @grastow. Thanks for sharing. I was diagnosed with UC in April after a lengthy hospital visit. I think I got lucky with the timing as well, having just graduated from undergrad. I started taking Prednisone in the hospital, and began Humira four weeks ago. I took my last dose of the steroid yesterday after a slow taper. Here's to hoping everything goes alright from now on 😀 Outside of a flare, I think fatigue is one of the most difficult things to navigate. I'm glad you got some clarity regarding your symptoms! I have kind of a reversed situation, where energy wasn't really an issue before (aside from a lack of motivation due to depression). Nowadays it can hit pretty hard. I'm still trying to figure out what's normal and what's not. I'm hoping that exercising when I can will help increase my overall capacity for movement, haha. I don't know if it'll work, but it's fun when I'm out and about. I hope that your energy levels improve and that you have fun exploring new hobbies when you have the chance. It can definitely be tough navigating mental health after a diagnosis like this. 
1. Traci Musick-Shaffer Moderator & Contributor
 <inline-mention username="foolishness" user-id="4792019"/> Oh, good! I'm so glad to read your update! I hope you continue progressing. Each body needs time to adjust to treatment. I hope you are having a pain-free day. Hugs to you! --Traci, UC-IBD Team Member
2. Sahara Fleetwood-Beresford Moderator & Contributor
 <inline-mention username="foolishness" user-id="4792019"/> wishing you all the best of luck! I find exercise helps overall, particularly because it helps me sleep, and not having enough sleep can contribute to flares. - Sahara (team member)
Max IBDoingbetter Member
Check out my story on mental health in young adults with crohn's. I was diagnosed at 19 (I'm 21 now) and I have a similar story. College can be very difficult. It was a very lonely time for me. However, I just graduated, so it is possible. Don't mess around with the mental health stuff, get it treated. I didn't for a long time and had suicidal thoughts. It's not worth it. It's a big adjustment, but use the resources around you.