Posted 4/30/2010 1:56 PM (GMT -7)
So after having been diagnosed with UC for over a year, I developed arthritis due to colitis. My hands swell up, my feet swell, ankles, sometimes my elbows knees, low back hurts... Doc says the prevailing theory is immune system attacks the joints in a similar, but not identical way rheumatoid arthritis does. (various sources I've come across agree)
Its not too terrible, it hurts some, a little bothersome. It's nothing compared to the UC.
Anyhow, my UC is not well controlled, each medication I try loses its effectiveness after a couple of months. I am now on Imuran, (used to be on sulfasalazine,) and a big dose of Remicade. I've been on the remicade for over a year, it's starting to lose effectiveness too. Also probiotics.
I have recently been put on methotrexate. It's an old cancer drug that is used often these days for rheumatoid arthritis. Anyhow, it is a very dangerous drug. The potential side effects make everything else look like candy. The pharmacy has a note on it when I get it that says "Your doctor has decided to give this to you, only because he/she has exhausted all other options."
Its scary and almost funny to read the paperwork from the pharmacy; ie "call your physician immediately if you experience a coma".
The methotrexate is not helping the arthritis at all, but it's helping the UC, like the doc said it would.
But my docs are great. Nice smart, helpful, accessible. My GI and rheumatologist communicate well, and my rheumatologist knows quite a bit about IBD too.
Anyhow, I am at a point where I am seriously considering a total colectomy.
The main reasons for wanting the colectomy are these:
1 Even when my symptoms of UC are under control, I feel terrible. I have headaches almost constantly, I'm mega exhausted, my hair is falling out, my skin on my fingers is coming off, etc etc. (My doc knows about the skin thing, we are keeping a close eye on that) When I am having UC symptoms, the swelling gets really bad, and it gets to the point where it's very hard to push out even diarrhea. I'm worried about the potential of toxic megacolon.
2 I am worried that these heavy hitter medications that are affecting me badly at age 27 are gonna cause REAL problems after taking them for decades.
Now if I get the colectomy, no more meds, no more colon, no more crazy side effects! YAY! Except... The arthritis... :( My doctors have said that usually the arthritis due to colitis sticks around after a colectomy, sometimes it goes away a little. There is unfortunately only a little research on it. I read on one website, (can't remeber which, and I don't know how reliable the info is) that post colectomy, other issues like arthritis can go away too. But all other sources I've found agree that the arthritis sticks around after a colectomy.
I am currently on mega powered arthritis meds. For people with either arthritis due to colitis or rheumatoid arthritis, they receive, you guessed it, imuran, remicade, methotrexate. Exactly what I'm on. I'm taking those and maybe they are keeping the arthritis at bay...
So I'm worried I'll get the colectomy, and without the drugs I'll get very severe arthritis, and have to go right back onto the drugs I'm hoping to avoid.
My question is, and I know its a long shot: Does anyone here have arthritis due to UC, and have had a colectomy? Or at least can shed some light on the subject? or know someone in my boat?