I posted once before to introduce myself, have since added a signature with info as I see others doing and wanted to ask some more questions. Previously I was asking for advice on what to do as I had 2 fistulotomy's within 6months of each other and my surgeon was offering me the 2 options, cut or live with it while warning of the risk of incontinence as a result.
People advised me to get myself into the GI and IBD programs at Chapel Hill UNC, which I have done and I now have options and a fantastic Doctor (Long) and surgeon (Sadiq) helping me through this. They've done a colonoscopy, endoscopy and thoroughly checked whats going on. Turned out I had a large necrotic inflammation in my ileum, they thought they were going to have to resection, but I've dodged that bullet.
I've been getting vaccinated for pretty much everything, turned out I had some TB in my system and I've moved on to a course of meds for that while getting antibiotics to ensure the fistulas dont recur and steroids to improve the ileum. I'm moving on to my first Remicade infusion on Dec16th and, well I'm scared.
I'm reading up on the positives and negatives online, educating myself is equal parts terrifying and empowering and meanwhile with all the meds i am on I am a zombie atm, feels like its the TB meds that are really kicking me, lots of nausea, developed thrush, more reflux, insomnia, chills, pains etc. Not severe reactions, but wide spread and I have a 4month course to get through.
I was just looking for folks who have already moved on to Remicade to share their experiences, how much did it improve of inhibit their life? My doctors are talking about dramatic improvements to my crohns, arthritis and perianal disease all at once, they say the type of disease I have is such that it will respond incredibly well to the Remicade and I will feel like a new person rather than a zombie.
I'm reading about the sideffects though and wondering how it will affect my professional life, I get concerned about people passing on their illness to me , how will that work once I am on the Remicade. I've been more anxious and unstable during this last 6months, firstly in wonderment and fear at what might be going on with my body and now in wonderment of how much my life might be further restricted, the notion that I've gone from moderate to severe, that my doctors initially sat me down and told me basically that I've had a good run of it until now, but things have progressed.... well its a lot to deal with.
I've had my xanax and lamictal dose doubled and thats claming me, but its only more information that will calm me more so I hope folk can share.