Dotting My I’s

Surgery is scheduled for June 27 — about 3 weeks from now. During this tortuous stew period, I’m doing my due diligence (or confirmatory discovery, if you’re a litigator). I’ve spoke with several J Pouchers my surgeon referred me to. It is extremely helpful to get a firsthand perspective on the surgeries and recovery. On the whole, they all had an positive experiences (which I suppose is to be expected from surgeon referrals). That said, they did not escape without some complications. One had a blockage after the first surgery and had to return to the hospital. Another had complications after the second surgery resulting in a much longer hospital stay than is typical. Another has not slept through the night since his surgery because his pouch simply doesn’t have the needed capacity. But all are doing great now and would definitely make the same decision. The eat what they want (more or less), they travel without fear, they work, they go to movies, they go on vacation, they live  their lives.

I’ve also been tracking “Collegiate Colitis” as she blogs about her recovery from her surgery in early May. Unfortunately, she’s had a pretty difficult time—with intestinal blockages, extreme pain, and repeated hospitalizations. But she seems to be over the hump now and (hopefully) on her way to recovery. Even as she has struggled with what sounds like a truly dreadful situation, she has inspired me with her positive attitude and optimism. For those who know me, those traits are not necessarily my strong suits. But I’m working on it.

Yesterday, I met with my GI to discuss my situation, all available options (including the crazy ones), and confirm my surgery decision. We talked for an hour,* and it was incredibly helpful and reassuring. We confirmed: (1) my colitis is bad, (2) my colitis does not respond to first-line meds (and hasn’t for awhile), (3) my colitis does not respond to other meds like 6-MP or Remicade, (4) there is no reason to think Humira would work for me where Remicade didn’t (especially because, in my case, Remicade did not stop working due to antibody buildup — I still had extremely high trough levels of the drug, it just wasn’t doing anything), (5) I can’t stay on prednisone forever, (6) I can’t stay in a flare forever, (7) there are no new drugs on the near-term (2-3 year) horizon and no open trials for promising drugs in the pipeline, and (8) the vast majority of people have a positive experience with the surgery and wish they had done it earlier. I’m at peace with my decision.

But I’m still meeting with another GI on Wednesday for yet another opinion…


* My GI at Palo Alto Medical Foundation has been truly fantastic. He never rushes me out of his office. He returns calls. He answers emails. He finds and sends me studies I’m interested in. He answers all of my inane questions. He takes the time to explain things. Repeatedly. He’s exactly what you’d want in a doctor in dealing with a disease like this or contemplating a surgery like this. And he’s accepting new patients…

This entry was posted in Remicade, Ulcerative Colitis, Uncategorized and tagged , , . Bookmark the permalink.

One Response to Dotting My I’s

  1. Pingback: Breathe In, Breathe Out | Know Guts

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