I had been becoming a more regular poster and Humira fan, and then fell apart mid-summer and have been offline until recently, so a quick update:
Was feeling great and close to remission on weekly Humira and tapering Prednisone to 7.5/5mg. Got down to 5 mg, and went back into full flare mode, right in the middle of a family trip to Hawaii. Back home, spent the month of Aug basically bedridden, trying to avoid the hospital. Saw my GI and also my IBD specialist/consultant, and my options were Tsabri or surgery. Had a colonoscopy which showed that my rectum and other areas of my colon had healed (during my Humira treatment), but that the ulcerated areas on the left side had actually deepened and worsened dramatically. Go figure. I have been having extreme pain, which is not a regular symptom for me, and my GI said it is due to the severity of the ulcerations and inflammation.
When I was too weak to walk or get up from the toilet unassisted, was hospitalized for 2 weeks and stabilized on high dose solumedrol/prednisone and cyclosporine, along with lots of pain meds. The cyclosporine reportedly made me ineligible for Tsabri, according to my specialist. So the decision for surgery was made, and I am actually relieved. I was scared about the Tsabri, and was leaning towards surgery, b/c I am tired of being so miserably sick, but was having a hard time pulling the trigger. The time in the hospital allowed me to realize that I want the surgery and am at peace with it. Aside from my occasional freak-outs about it, which I think is normal.
I have been sick for 2 and a half years, with no real remission, have failed every med I've tried, and have been prednisone dependent for over a year. The prednisone is killing my body as much as my crohnsy colon is. I'm ready for a change, as drastic as it is, and my medical team has all agreed that a surgical solution is my best and most realistic one.
So got out of the hospital, have been getting stronger at home, fingers crossed am still stable on pred and cyclosporine, as well as percocet, and interviewed surgeons. Picked my surgeon, had all kinds of tests (Upper endoscopy, small bowel series, pillcam) which confirmed my Crohns is limited to my colon at present, and surgery is scheduled for 10/10. The surgeons all agreed my colon continues to be very inflamed and needs to come out NOW. It will be a 2 part surgery, laproscopic if all goes well.
Sorry for the novel! It's good to be back.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Entocort, and Remicade
On Humira since 1/08 with promising results, but can't get below 5mg Prednisone
4/9/08 Humira dose increased to 40mg/weekly
Now alternating 7.5 mg/5 mg pred