Hi All,
I've posted here in the past as LC but for some reason I can't access my old profile. Anyway, I've been battling a flared up fistula for the last 3 years and after lots of scopes, dilations, antibiotics, and an abscessed seton stitch, it looks like a probably diagnosis of some sort of Crohns in my j-pouch. For the first time since I've had my pouch (18 years!), my GI doctor saw small ulcers in my pouch although I don't have any in my small intestine (yay????). We are waiting on pathology. My pouch has progressively been getting more finicky since the birth of my daughter 3 years ago. I don't know if pregnancy/post-pregnancy did something to my immune system but its absolute shit. Anyway, the specialist I saw at the UMD (Maryland) IBD clinic thinks its likely I have some sort of Crohns and said that I need to be on an anti-TNFalpha.
I am not at all pleased with this but feel stuck because I clearly need to do something about the fistula. All of my recent pouch issues can be traced back to the fistula being inflamed but I don't know if its a cause or an effect. It is also slowly destroying my marriage- the grumpiness associated with having an inflamed butt, the ick of being on nasty antibiotics, the lack of sex from having an infection right next to my vagina, the time to sitz bath almost every day... My husband is completely done with my health issues (and bitchiness over them) and is threatening to outright leave me or force me into an open marriage he can at least have sex with someone...
My doctors indicated that its a life long commitment to taking anti-TNFalpha drugs. I don't want to be immunosuppressed for the next 50+ years of my life (I am 33). Has anyone used Remicade or Humira for a fistula or J pouch ulcers? I am curious how you responded to it and if you decided to stay on it? Have you had serious complications from the medication? I have a 3 year old and I do get a lot of mild respiratory diseases from her. I also work in a field where I was planning to work with human pathogens. My plan was to work in vaccine/drug development but I would need to be able to pass a physical to do this (and receive live vaccines). I have a MS in immunology and microbiology, about to receive a PhD, and I have papers in this field... I feel like the rest of my life is going to revolve around having huge amounts of money/insurance to cover the drugs, cancer screenings, panic about fevers, being around for infusions, and avoiding infectious disease/being stuck at a desk. Anyway, thoughts about how you dealt with these drugs would be appreciated.