A bit hopeless and very sad

Hello everyone!

Pardon my English, it is not my first language, but I don’t know what else to do. I’ve had colitis since I was 13 and right now I am 22, turning 23 in June. My colitis has been kind of mild to moderate with it’s ups and downs, but since autumn 2023 I have had more flare ups than ever and they usually cause me lower abdominal pain, diarrhea, nausea and bloating. Lately my overall gut health has been worse, I have upper abdominal pain as well and I feel most of the time like I need to vomit, but never do. I bloat, I need to use bathroom more frequently. Why am I telling this? I got my stool and blood tests done a few weeks ago, last colonoscopy in September and the doctors said despite the small inflammation, everything looks fine and blood work is the best I have had in years. So my question - why do I feel so shit if everything is supposedly nice and exceptional? In addition to this, my gastroenterologist booked me another visit in the end of May for gastroscopy and colonoscopy to figure out, what is going on, she said “Maybe you have Crohn’s, but who knows?” I have been using mesalamine tablets all my colitis life, nothing else.

I have many questions and since I come from a small place, I have no support system, no one who understands the pain and the fears I have regarding this disease.

Does anyone have any experience with misdiagnosis or thinking having colitis, but actually has Crohn’s? Is it worse? Also - are other, stronger drugs actually worse and more damaging? I think mesalamine is kind of the mildest drug out there for colitis and I am scared to use anything else. I am a big fan of eastern and herbal medicine, so if anyone has any recommendations I am really open to this as well in addition to western medicine and pharmaceuticals.

Sorry for the long text. I feel like I am really alone in this although I have an amazing family and boyfriend, but they will never understand the pain of having IBD while you are supposed to be young, healthy and social young adult enjoying her 20s.

Thanks for any help and thoughts, this group has given me a lot of food for thought and helped me realise that I am not so alone in this.