Well, they say misery loves company so I hope my post doesn't make you feel worse.
I want to let you know you are not alone. I, too, have to deal with fire-butt, and people who have no clue how debilitating this is (including my gastro.. I guess some people with fistulas don't have any pain).. but ..
I have 3 fistulas. One, I have had for over 7 years. They have setons draining the pus, mucus, and blood. There is no more poo as I had a colostomy, after the remicade and humira failed to close them. Notwithstanding this, the copious discharge still feels like it is eating my skin. Some days I am so sore I can barely move. This is no way to live..
ANd I get "helpful" comments all the time, like "you sure don't look sick!". great thanks, so am I a liar, or lazy or what??
Don't stop eating. Do you have D? If you need a break, have a couple imodium to simmer things down for an hour or 2.
When things get bad (like every night) I take some painkillers and hop in the tub (with epsom salts). When I'm in the tub is the only time it doesn't hurt.
If you are itching like crazy at night, get a script
for hydroxyzine. It has helped a bit.
I wish my story wasn't so depressing,, but you might get luckier than me. I hope so. If you ever need to vent to someon e who knows , and is there with you right now, just pm me and I'mm give you my email addy.
33 years old, dx with Crohn's in 1998. Currently on :
Clofazimine 100mg daily,
Rifampin 600mg daily, and Clarithromycin 2 tabs daily
and Cipralex 10mg/day for anxiety.
Hydroxyzine, percocet, Ativan as needed.
5g pharmaceutical grade Omega 3's, 1000IU's Vitamin D3 daily
2 Perianal fistulas, and 1 more suspected. Crohn's only at end of colon, cecum. Remi, Asacol, Salofalk, Imuran, Humira did nada. Built immunity to long-term Cipro use, which also induced panic attacks.