I was diagnosed about two years ago now and have had my life turned upside down. I was in my freshman year of college and it came on and has been horrible. Some people I have told about it have had no idea what this disease was. Since it is relatively common 1~600 I thought I would answer some questions about it while I am bored.
I am 20 years old and have a autoimmune disease called Crohn’s disease, it has ruined my life. AMA
r/AMA
Comments
How did you find out?
As someone with UC, I feel you. Was also diagnosed in college! Most people don’t understand, so I just wanted to say I understand your struggle.
How are you coping and doing mentally?
Do you use cannabis?
What are the worst things in everyday life about having this disease?
Sorry to hear. I’m in college and been diagnosed with MS. Any autoimmune condition really sucks. Stay strong 💪🏽
i have a friend who’se lived with it and said it got a lot better when he started getting serious about his food (no gluten etc) and microdosing acid to rebalance immune system
Are you taking any immunotherapy medication? Did you go to a specialist?
There are medications out there, although fairly expensive, but there are also good copay assistance options. Make sure you have health plan that does not have a very high deductible but that covers these types of treatments.
What are some things that friends and family can do or at least understand to help someone with Crohn’s?
Try and get your meds sorted and it will start to stabilise
I’ve had it for about 20 years and at first it was difficult, apart from 2 or 3 bad bouts I’ve led a fairly normal existence with it
Still eat what I want within reason and play sport, going out unplanned can be a chore if it’s not under control
It looks bad when it’s at its worse, my last colonoscopy was really as clear as I can remember it
No questions – I have crohns, IBD, and now fibromyalgia. I didn’t know that once you get diagnosed with one autoimmune disease your chances of additional go up tremendously. Stay well and thinking of you.
My partner was diagnosed with Crohn’s when they were 16 and had a bad flare up similar age to you in their second year of university.
They were hospitalised for quite a while and had to have an ileostomy and then had a reversal a year later. Some people hate stomas and some people find them really liberating. I don’t think they liked theirs.
They’ve been in remission for ten years now. They still experience toilet urgency and are limited in what they can eat, but no vomiting, minimal pain and their pooing tends to only be a lot in the morning. It does get better once you find the right treatment to get control of it!
Idk what drugs are available in the US, but they take azathioprine as their immunosuppressant and it works really well touchwood.
But yeah the trauma of the illness and how it changes your life and how people treated them also needed a lot of therapy (and still does to this day). Are you getting any mental health support? Feel like that’s often neglected
How do you stay positive despite the challenges Crohn’s disease presents?