Posted 4/29/2011 4:32 AM (GMT -7)
Sigma Chi, welcome to the list. As others say, you are doing amazingly well.... don't feel pressured to be that way every day, though. You've been through a lot, and some of the "negative" emotions are often part of the healing too. So, if you get angry or sad or scared or whatever, that doesn't take away from how great you're doing.
My story, shorter version: I was diagnosed with UC in 2004, after several years of thinking I just got diarrhea when I was stressed and it was no big deal. I only had a flex sig at the diagnosis, because my blood pressure was low. When I later had a colonoscopy, they said no, it looked more like Crohn's. My diagnosis has flipped back and forth ever since, and they're still not sure.
I went through most of the drugs. At first I took asacol, which pretty much did nothing, and prednisone when I'd flare. Then I became resistant to the pred, and was hospitalized for 2 and a half weeks. Like blueheron, remicade sprung me from the hospital, but it worked better for me than it did for her. I wasn't all the way in remission, usually had blood in my stool, but I got a pretty good year from remicade, and then it stopped working. Another hospitalization, but this time the IV steroids worked. Tried humira and cimzia, scary drugs that didn't work much. I've also been on others.
Just kept getting worse, but I adapted to it, a strength and a weakness. In November of last year I started getting boils, (mostly) all over my butt, it was awful, they were incredibly painful and hard to dress. Biopsies "confirmed" a cutaneous Crohn's diagnosis, a rare complication. Then my eyes went crazy, incredibly painful and light sensitive, I was wearing sunglasses indoors and still shielding my face. First I got diagnosed with conjunctivitis but it didn't get better, and I went back and it was marginal keratitis, something the opthamologist said he'd never seen in 30 years in someone w/IBD, but that it was probably related, as it's an inflamatory condition.
Then I went in for a routine visit w/my gi doc, and I was feeling awful that day, very low energy. He took my temp, and it was 104.... put me in the hospital again, ten days this time, and that was my most terrifying hospitalization. I was on cimzia, a powerful immunosuppressant, that says it has fatal infections as a possible side effect, and well, that might be what they'd look like. Plus I was so, so sick with the "shake and bake" high fever thing, being really cold and shivering and then a bit later needing ice packs cause I was so hot.
I still resisted surgery. One of the docs gave me a slide show tour of my colonoscopies, showing me how much worse things had been getting. My gi doc said the problem was that you couldn't see your colon.... that if a piano fell on my leg and it was totally mangled, you wouldn't expect that rest and some dietary changes would fix it. The docs were all clear that prednisone was not a long term option, and that otherwise I was either looking at tysabri (which has caused fatal brain infections and only has a 1/3 chance of working anyways) or a clinical trial.
I was jacked up on pred when I got out of the hospital, and after some rest, feeling pretty good. Then I found out that my work had arranged for me to be out until after spring break (I teach), and I'd never missed so much teaching before. I thought that I'd rather keep my job than my colon. Also, I just felt like no way, no more of these horrible drugs. All of a sudden I was very clear that surgery was the way, and I've stayed clear throughout.
I was able to schedule surgery in two weeks, did a very fast taper to get down to 20 mg of prednisone. At this point, my diagnosis was still Crohn's, and my doc recommended proctocolectomy with permanent ileo (take out rectum, anus, colon, and as I later learned, appendix too, it's attached). Surgeon pressed me on whether to leave possibility of a J pouch in the future, but it seemed unlikely, and I just didn't want more surgeries/hospitalizations.
The surgery went well. It was laparoscopic, so my belly wounds healed quickly (just 4 things with maybe 3 stitches in each). I got an abscess in the butt wound a week after I got out of the hospital, another high fever, and another four days in the hospital. In the CT for the abscess, they found a blood clot in my hepatic vein, so I got 6 months of coumadin.
The butt wound is healing very slowly, and that's been hard. My heavy steroid use and being older than you are factors. I see my surgeon next week, wondering how long it needs to stay open and draining.
On the pathology report from my colon, turns out there was no evidence of Crohn's, it looked more like UC. So, I'm back to not knowing what I have.... it would be much better if it were UC.
Even though I'm not fully recovered yet, so many things are so much easier than with IBD.... my days are not ruled by urgency. I have gained weight. My energy is still a bit depleted, but I'm optimistic.
I did see a picture of my colon, and it looked awful, helped confirm my decision to have surgery (although I found out later that the black spots on it were injuries from the surgery itself, they weren't there when it was in me).
I can't really say that I wish I had surgery earlier, but I can see where in the long run, there are advantages to having things work out as they did for you.
Hope things continue to go well for you, and that you get back soon to the things you've missed.
OK, my shorter version isn't that short.....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery