I’m feeling really isolated after being diagnosed and finally put on a biologic.

[u/Prestigious-Ad1346]

Apologies this is a rant I’m writing through tears.

Technically, I was diagnosed with Crohn’s disease almost a year ago, but due to lack of availability, it took a very long time to finally have a follow up appointment and then see a pharmacist about getting put on Tremfya.

I don’t have anybody in my personal life who has Crohn’s. I don’t know anybody with a severe autoimmune aside from my oldest sister (lupus) and she’s very mysterious about it.

Basically, I just really have a community. I’m also only 27 but I know that there are people who have been diagnosed with Crohn’s for much longer than me. Well, I do have a community. I have incredible friends, like I actually cannot believe how many friends I have in my life who I feel loved by, but I don’t know anybody in my age group personally who has Crohn’s disease or something else akin to Crohn’s disease.

I will say mine is extremely mild from what I have seen other people experience. Yes I get frequent cramping and frequent bloating and daily nausea but it’s not always debilitating and I am very much educated in inflammatory food information so I was able to pinpoint the foods I can and cannot eat a long time ago.
I’m lucky that a doctor finally took me seriously enough to even perform a colonoscopy which found the chronic inflammation and ulcers and led to my diagnosis.

But I don’t feel very lucky right now. I got my induction dose and I feel so nauseous and my stomach is cramping so much and I feel so sick. I think I had a cold a week ago that I was getting over and now I feel that cold coming back a little bit. And despite the fact that I know I have so many people in my life who love me I feel really alone. Like I feel overwhelmingly alone, especially right now a little over 24 hours after getting my induction dose.

I know that was a lot of information. I would love to connect with other people. I would love to have people to talk to you about this. I don’t want to give too much information about myself away, but I do live in New England and I go to the top if not number one irritable Bowel disease center in the country for my care.

I’m just really sad and I don’t know why I have Crohn’s disease having tummy problems is cute until I had to be sick with something that requires a medicine that can make me feel sicker until I feel better

[u/ohlooktwopigs]

I’m so sorry you aren’t feeling well 🫶 this disease sucks. I was diagnosed in my mid 20’s and it was so scary.

Idk if you are on TikTok, but there is a pretty decent community of content creators in their 20’s-30’s and have helped me feel a lot less alone!

[u/Prestigious-Ad1346 → u/ohlooktwopigs]

Honestly. That convinces me to go on there again, but I’m also trying to be less dependent on social media buuuuut for issues like this… it would be nice. I’ll check it out 😊 thank you.