Stelara will probably be my next biologic if Entyvio doesn't work out. I'm hoping the Entyvio works, because it is the first drug I've been on where I have had no unpleasant side effects. It seems to be helping in my gut, it has gotten much less tender and my BMs have greatly improved, it's just this whole fistula/abscess thing is hard to get ahead of with a slow-acting drug, I think.
Unfortunatley flagyl/cipro make me incredibly nauseous. Not quite vomitting, but just the worst upset stomach, constantly. After a week, I felt just absolutely terrible. I can kinda do it if I have an anti-nausea prescript
ion, but after awhile that doesn't even help. The first few weeks I bore with it, the next time I was put on it I asked for anti-nausea, and the third time, my surgeon prescribed me something else instead. Surgically laying
open the abscesses and letting them heal has so far worked the best in relieving the infection and bringing healing. Where that was done, I have no abscess anymore, but I seem to have some small pockets of infection just "below" those spots, towards where the anterior internal
opening is. It feels less swollen than two days ago. I see the surgeon for my follow-up visit on Monday, and my GI the week following.
I have very supportive family and friends. I don't know what I would do without them, especially when things are bad. I used to feel really really down about
my health, self esteem, feeling like a burden/useless because I couldn't do as much as a healthy person, etc.. I started therapy in December 2018 and am a lot better now. I had to pay out of pocket for awhile until I got insurance that would cover it, but it was worth it to me. It has helped me take back my capacity to be so upbeat about
things and to find many ways that I can still enjoy my life, even with the constant reminders that I am ill. My therapist called me "very resilient".
Thank you for welcoming me, y'all seem like really nice people. It's nice to meet you! I'm glad that you have either been lucky enough to avoid a fistula/had great success in healing it. That's great! I hope your other symptoms aren't too bad. . . I have managed to get rid of my joint pain the last few years with VitB12 and diet changes. The Entyvio has helped with tenderness, BMs, and occasional mouth sores. My only symptoms seem to be the fistula and the abscesses. I have found a whole reference thread on abscesses/fistulas that I am going to check out, and will be around posting. I will post an update about
my health plan in the next week or so