So, the cyclosporine got me down to 10 trips to the bathroom which was much improved from 27. I had been on that plus, zofran for naseau, protonix for reflux, probiotics, adavan for anxiety and naseau, prednisone (30) MG, folic acid, magnesium, potassium, IV fluids, 2 pints of blood needed to be transfused, bentyl for cramping, dapson (another anti inflammatory), and 1 shot of methotrexate. This is all after being in the hospital for 3 weeks and counting. So, things started to look like I was headed into remission. 48 hours ago I was ready to spring the joint feeling better than I had in Months. Then it was time to disconnect the Cyclosporine. 48 hours later I am back to the bathroom 16 times so far in a 21 hour period, throwing up, naseau is back. So, Cyclosporine did not save my colon but now I am back on it to bridge the time it will take from me to be transferred to a hospital with state of the art facilities to remove the colon entirely. I am not sure if it will be a 1 or 2 stage surgery. I hear that most docs do it in 2 phases 1) remove the colon and attach an ostmy. 2) Weeks later reconstructive surgery to connect small bowl and J pouch to the exit door.
I have read many sucess stories on this forum and the thought of surgery scares the crap out of me, the result is being disease free. I don't know what life will be like without a colon. But I am hopeful once recoverd that I can say I am well and healthy once again. I've got 2 young kids at home. We missed X-mas and New Years together with me being in the hospital. They could not come becuase I caught C-diff on top of the flare. We UC people are at such greater risk for this. Immune suppressed, hospitalized, being on anti-biotics, digestive flares. Geez, talk about not gettting a break. Since it causes all the same symptoms as UC you never know if your disease is getting better or worse and from what. Well, I have to test negative before any colorectal surgeon would even consider operating. I hope it comes back negative and we can move forward with the cure.
Diagnosed with UC since 1999
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Bentyl for cramping