Could use some encouragement about treatment
Hi 23F here, got diagnosed in April with inflammation of the terminal ileum. I’ve had to stay in the hospital 3 times this year and the past nearly 2 months have been hell. Worst pain of my entire life but I typically don’t have diarrhea like I used to, I have pretty infrequent bowel movements and I have a lot of pressure and bloatedness that I assume is from inflammation and I can’t really relieve. I’ve been on steroids for almost 2 months and am tapering down now and I’ve had a lot of bad side effects like the mental fog and all that.
I’m on my 3rd week of Rinvoq and I’m still dealing with constant pain everyday, electrolyte drinks and Tylenol help but I’m so exhausted having to deal with this. I’m depressed and worried about how low the success rates are for immunosuppressants, from what I’ve seen they’re like 30-50% and then only 20% maintain remission.
Eating is a big coping mechanism for me and is the highlight of my life and it’s disheartening I can’t indulge in it like I used to. I just want to be able to live like other people and I’m just scared I’m never going to be able to go into remission.
I’ve completely cut out smoking and I’m eating safe things like rice and chicken but I’m still having pain everyday and it just feels like I’m never gonna live a normal life again. If someone could give me some encouragement or advice or support I would really appreciate it.