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TRIP REPORT: SAINT JOHN (No, not the island). Part 1.

My wife was diagnosed with ulcerative colitis (UC) about 11 years ago. We’ve been married for 12, so you can see this has been a major presence in our lives. She would have a major flare about every two years. Flares early on started out responding to steroids really well. But with each flare, getting her back to remission was more and more difficult.  It was no longer a bump in the road. Now, it was a half-year ordeal. 

We became used to a life of uncertainty. “When will the next flare hit?” This was often a thought, but rarely spoken. It’s hard not to be superstitious. But I wouldn’t talk about superstition either. Cognitively I know my thoughts won’t make a flare happen, but “why tempt fate.” We also became used to planning vacations that would have little or no penalty if you had to cancel them. Because you don’t know. (This flare required cancelation of three planned trips).

This last flare started in February. Humira had failed. When she started this medication two years ago, it worked beautifully. It was expensive; thank God for good health insurance. The cost was about $60,000 a year. In two years time, this widely prescribed med somehow now carried a cost of about $75,000. Drug companies care more about their money than people or society. That’s a rant I won’t start. But it did stop working. 

Every step of the way, navigating through a flare takes time. It took about 6 weeks to decide there was no salvaging Humira, as add-on medications had failed to regain remission. It was time to stop Humira, and move on. She really only had two options. She chose Entyvio. An intravenous infusion. It’s fairly new. Conventional wisdom says, you have to give it 12 weeks to deem it a failure if the response isn’t seen. So, to keep you alive, you have to be on steroids. Prednisone, it’s hard on the body. She was on this for four straight months. No fun at all, and hard on the body, so you taper it down. When she would taper, Entyvio should be carrying her on to a better state of health, causing symptoms to continue to improve. But when she tapered, she got much worse. There is a new study that looks at the lab fecal calprotectin levels, a marker of colonic inflammation, after two weeks of Entyvio and it predicts who will get to remission and who won’t respond by week 12. Unfortunately, this was brand new information and the study was much to small to make clinical decisions with yet, but it did suggest Entyvio will not get her into remission no matter how long you had her on it. But when the next option is a permanent two stage surgery, you must know for sure. So she kept marching onward into battle. Suffering. Life on hold. Crapping blood and mucus 20 to 30 times a day with only a moment’s notice. Prisoner to your house. Slowing down time to a painful depressing crawl. 

Total colectomy is a curative surgery for UC, but it’s a big step. It’s a long process. There is a very small risk things could not go right and you’d end up with an end ileostomy for life. But she was finally at a place that there were really no good options left. The surgery date was set, 7/19/2019, for a laparoscopic total proctocolectomy with ileal pouch anal anastomosis with temporary loop ileostomy. Now, all we had to do was not get let the UC get so fulminant that she wouldn’t need an urgent open surgery.

Several days after stepping down her prednisone to 30mg, still a pretty serious dose, she began having fevers and it was clear the symptoms were accelerating. We had to get her admitted for increase IV steroids, antibiotics and IV fluids. It was only a three day hospital stay, but it was really key to making it to her surgery date. It helped tremendously. Things were really pretty manageable the last two weeks. Which really jacks with your mind. “Does she still need surgery? It’s getting better!” But the reality is, the medications aren’t getting her into remission, they’re holding her from deterioration. And there is no way to stay on prednisone and Cipro/Flagyl antibiotics for life.

As I write this, it feels sort of “matter of fact.” But I remember the experience. It was anything but matter of fact. It was agony. AGONY! A complete mind battle. The thought of my wife being wheeled off to have a major organ removed and to poop into a bag that sticks to her abdominal wall just didn’t seem real. It couldn’t seem real. This isn’t something that happens to people I know! It just can’t be! How did we get here?! What if something goes wrong?! Is there another way?! GOD HELP!!


I had to just stop. Shut my mind down. Force myself to not think about anything beyond the very second I am currently in… or I’d just start feeling completely overwhelmed. “I can’t unravel! I have to keep it together so that she can keep herself together too.”

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