Cyclosporine is the last resort or bye bye colon (update)

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.

 

With your current health I don't believe you would be a candidate for a 1-stage surgery and possibly not a 2-step either. However, no matter whether you get a 2 or 3 step surgery you are immediately going to feel better once that colon is gone! I think your case is ideal for making a decision for surgery, you just aren't responding to meds and have no quality of life. Hang in there, the next year will be difficult but it will be made easier because you will be healthy.

Sue

Sorry to read that you've had complications, including c-diff, but thank you for updating us. It sounds like the doctors have a reasonable plan for getting you back in fighting shape. Good luck for discharge to home & best wishes for you to regain strength ASAP. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Your liver will thank you too.

Keep us posted on your progress going forward...it will be quite interesting comparing your experiences vs. Paul who's also on the forum and just had his done.

God bless and God's speed! : )

Thanks for all of your support and experiences with the surgery and people you know who have had it. I can't wait for the day I can wake up and feel well again. Things are not improving as planned and it is looking like this is gonna be a three step surgery and more emergent one but I see the light at the end of the tunnel and that can't come fast enough. You have all kept my spirits and hopes up when I have felt the despair of the gut with the bathroom runs. I don't know where I would be without this forum!!

I went to the same doctor as Keith and was hospitalized for 12 days. I agree with him that a second opinion might be warranted. That was 11 years ago and I have had only minor flare-ups since then. I also contracted C-diff. Without the culture, I would have sworn it was a flare-up. So, wait and see how you are once the C-diff is gone. I was treated with Vancomycin for C-diff.

I wish you luck.

M