Surgery, velsipity, and skyrizi/tremfya questions (mostly about surgery)
For those who had surgery by choice, how did you know it was time? I am flaring up again on Rinvoq & Entyvio and now added budesonide pills. It is really impacting my quality of life, but my labs do look like it's a mild or at least mild-moderate flare. I only really have responses to high doses of meds (like Rinvoq 45mg) and even that only lasts a few months/less than a year. But I also do have a couple more med options, I'm just not sure how likely it is that those will give me what I need since I don't usually have a lot of luck with biologics. I haven't been hospitalized in a couple years, but I don't feel like I'm at all getting the quality of life I want. I'm a bit nervous to leave the house because I keep having to run to the bathroom, and I'm having trouble controlling my pain levels even with all my as needed meds. I almost went to the ER yesterday but things are a bit better today. I'm also in college right now and I'm really afraid of how I'll be able to manage a full-time job when I graduate if I continue to flare, and I will need to get a part-time job soon anyway.
How did people choose between J-pouch and ostomy? I think I'd prefer an ostomy, but I would love to hear more thoughts.
How do you bring this up to doctors who may not understand the quality of life piece?
How do you manage things like leaks and surgery recovery? Those are both my biggest fears about surgery.
Do blockages actually happen much and do you prevent/manage those?
What do you generally wish you had known when you were considering surgery?
I am hoping to increase the frequency of Entyvio, but if that does not help I'm also going to look into skyrizi, tremfya, or velsipity. I think those are all I have left at this point. I would also love to hear if anyone's had experiences with those meds.
Anyway, that was a lot, but I am just really wanting to feel better and understand my options.
p.s. for those going on Rinvoq, it is an incredible med that took me from being in the hospital to traveling and having fun so it is still a great med, just not quite enough for me.