Life-changing decisions sometimes disguise themselves. You make a choice that, without you realizing, will set the course of your future.

But then there are the times when there is no masquerade. You face a crossroads where the consequences of your choice are unmistakable. It’s difficult to wrap your head around.

I’ve made plenty of big decisions on my own before of both kinds, but electing to pursue a major surgery on my own will probably be the most important of my life. Granted, I really don’t have much choice at this point. I’ve exhausted most of my options, but even if the current treatment I’m receiving in the hospital is successful, I am going to elect to proceed with surgery.

This whole situation caught many people by surprise, but to those closest to me I don’t think this is a surprise at all. I have been dreading the idea of surgery since my doctor first presented as a solution long ago, and it was always intended as a last resort. He was just trying to be thorough in laying out all the options but so many before me with this disease have had success with other treatments that I didn’t think we would ever actually reach this juncture. One by one as I continued down the list of treatments over the past year my confidants have been aware of my private frustration with my inability to tackle this stupid condition.

I’ve been vague on details long enough to give the weak-stomached a chance to exit, but here goes.

I suffer from an autoimmune disease called ulcerative colitis (UC). It seems to be hereditary but ultimately triggered by environmental factors like stress (researchers still don’t know the exact causes). In any case, the immune system begins attacking your large intestine. The small intestine is completely unaffected by the disease. When it “flares,” it causes chronic diarrhea. Some people get it worse than others, so patients may be classified as mild, moderate, or severe.

Because it’s how my life goes, I’m in the severe category. That means that not only do I have the diarrhea, it has significant blood loss and rapid dehydration associated with it. It also means I don’t respond to the most common treatments.

I’ve only been officially diagnosed since last December, but I think my problems go way back. I have had similar problems for many years going back through high school that, at the time, everyone thought was a sudden lactose intolerance caused by a stomach virus or something. I was never 100% convinced that was correct. I never responded to lactase supplements, and symptoms continued even if I was avoiding dairy entirely. It got better on its own my sophomore year of college, only to reappear during my final semester of college. The urgent care doc honestly didn’t really know what it was either, but for some reason he had the idea to give me steroids. That actually worked, but I always wondered what the heck it was.

I didn’t have to wonder for long since, about a year and a half after the urgent care at school, I suddenly found myself overnight crippled over a toilet to the point I had to set up a folding chair in front of it to lean on and rest my muscles. I still went to work the next day and, that evening, gave a tour of Mission Control to some folks. The whole time I felt loopy and just…out of it. Then I was walking out of Mission Control after the tour and got very dizzy. I crawled on my hands and knees to the elevator. I somehow got to my car and drove myself to the ER where I was treated for severe dehydration. They didn’t really know what to tell me about the diarrhea except that it was obviously related. That’s when I scheduled an appointment with my general practitioner, who suspected UC. He recommended me to a specialist, and I had a colonoscopy to confirm it was, in fact, UC.

After trying a number of different treatments, some requiring various levels of wrestling with my health insurance, and a second ER visit later, I finally seemed to have something that worked. By mid-April, I was finally off of steroids and in complete remission thanks to the miracles of modern pharmacology.

I won’t forget the date this crap started again (pun intended) because it was none other than my birthday. I got home from an event I attended as a present to myself and suddenly found myself in a familiar position in the bathroom. Next thing I know, I’m popping steroids again, fighting off dehydration, etc.

Steroids are intended only as a short-term treatment. Long-term use can lead to conditions like ostopenia, which is a loss of bone density. Unbeknownst to me, I had developed this. Restarting on the steroids did not help. This meant that, when I fell on my roller skates a few weeks later in a fall that I didn’t think was that bad, I fractured my right elbow. I’m a right handed guy, and this was less than a week before another colonoscopy. You do the math.

This time, after regularly meeting with my doctor and trying to tweak the treatment that had magically worked for me before…we realized this was a problem.

At this point, I started learning to live with the symptoms. I was ignoring the pain, wearing adult diapers every day, and keeping a smile on my face at work and acting like nothing was wrong. But for the last week, I had been struggling to keep that smile on my face as the symptoms got worse. I was starting to feel loopy, even perhaps a bit depressed. Should have seen the signs of dehydration coming but I think was consciously ignoring them. Then, the presentation.

NASA just announced a new class of flight directors who are now in the very early stages of their training. As part of their training, I was asked to present about the work my office performs. I was feeling loopy all day leading up to it, but I figured the bullets on the slides would keep me focused enough to get through it. Then, ten minutes before I was to start presenting, my bowels decided to evacuate themselves into my diaper. Great. Go to the bathroom and put on a spare I had on me. As soon as I start walking out of the bathroom, boom. It hits again. I go back and clean things up again, but now I have no other backups. I’m still in pain. My eyes watering uncontrollably. I can barely move. It’s one minute before I’m supposed to be presenting to these important people.

I got out of there not long after and was only a few minutes late. I made it through the presentation, but I’m not going to say that was the best presentation I ever gave. I hurried home where I basically passed out on my couch. I woke up late the next day, Friday, still on the couch, and rushed into work. I only had a few things to address before going to a previously-scheduled doctor appointment.

I get to my specialist’s office and he asks how things are going. I told him about my week and how things are getting worse but, all in all, I’m holding up. His eyes just get really big. The point of this appointment was to see how our current treatment attempt was going and discuss other variations we could make. Instead, though, he looks me in the eye.

“Look, man, I’m gonna be honest. I don’t even want to talk about these other options anymore. You are already at the highest dosages of all these strong medicines, and merely swapping them out for full dosages of other strong medicines is not going to make a big difference. You’re only getting worse and we’re running out of time. I honestly didn’t think any of this last round was going to work but I wanted to exhaust as many options as we could. I want you to consider surgery, and I want you to consider it right now. As in before you walk out of this office I want to admit you to the hospital.”

Going into the appointment, I figured something like this would happen because I knew things were only getting worse and I was thinking further medication was pointless. I had already made peace with the fact that we were probably going to talk about surgery before I got to his office. What I did not expect was the sudden urgency of the matter.

He still has a couple patients before the end of his day, so he leaves me to see them and will come back to talk to me after he’s done with the rest of his patients for the day. That’s when I start trying to call people in my family and I can’t get in touch with any of them. I call my bosses to let them know what’s going on because I was actually supposed to come in and work the overnight shift that night. And that I would probably need to postpone my final sim that I had been building up to for weeks. And that I would probably need to cancel my upcoming work trip to Alabama. Medical issues never come up when it’s convenient.

I finally get in touch with my family and tell them the plan. My mom and sister book flights to come down but my mom informs me that if she comes down here to take care of me she will likely lose her job. I tell her she really doesn’t need to do that then; if just my sister can come, that’s fine, but I now have enough good friends and coworkers here that have offered to help take care of me if they can’t make it. They decide to trek anyways.

I go back to see my doctor, and he takes me back to his office in the back. He tells me he wants me to get a second opinion, and that he has a friend in another practice he trusts. He calls in the favor on his cell phone. He also calls in a favor with a surgeon that, as it turns out, used to teach this very procedure to prospective colorectal surgeons at Baylor. They fax the hospital and I am sent home to get dinner and pack a bag for a few days.

I fell asleep on my couch and wake up to a phone call just before midnight from the hospital saying they have a room. I rush over and get checked in. They start IVs immediately and I fall asleep shortly after.

I wake up today and, one by one, each of the doctors come in. My specialist, then the surgeon, then the hospital attending doc, and finally the second opinion specialist.

My specialist lays out his gameplan for the weekend and week. He reiterates that he thinks this is the best plan to help me get back to health sooner and restore my quality of life.

The surgeon comes in and lays out what he thinks. From his perspective, we’ve exhausted all the useful medicinal options and we’re just prolonging the inevitable. There are many risks of complication if I wait until I’m unhealthy or unstable to do the surgery. That’s why my specialist told him he wants to do it now–because he thinks I’m still in a stable situation and mostly healthy but the clock is ticking as the symptoms only get worse.

The surgery he thinks would be best for me is a three-step Ileal Pouch-Anal Anastomosis (IPAA). The first procedure is a complete proctocolectomy (removing the rectum and large intestine entirely) and then creating a temporary ileostomy. The latter is where part of the small intestine will protrude out of my abdomen and empty into a pouch. The second procedure will construct a small “pouch” out of the end of my small intestine and connect it to the anus. The third operation removes the temporary ileostomy and reconnects all the pieces so that my small intestine can empty into the toilet somewhat like a normal human. Without the large intestine, I will lack some ability to absorb electrolytes and water. Otherwise, though, one can still live fairly normally without a colon.

The hospital doc is still playing catch-up since he wasn’t part of the conversation yesterday. I tell him my story, and he’s wanting to confirm my current state and ensure I’m healthy and stable for possible surgery. He’s also the one focusing on getting me currently rehydrated and nourished.

The second specialist listens to the whole story from the ground up to try to offer a complete outsider assessment of the situation. He says he agrees with the others, but his focus is on cancer prevention. If I don’t get surgery, I’m just going to be living for a long time with a sick colon maintained with sub-optimal treatments for my disease progression. The longer the disease actively persists, your chances of colon cancer increase exponentially. So from his perspective, not getting surgery is prolonging the inevitable and I will have very high likelihood of colon cancer.

If I wasn’t convinced before then…

My specialist circles back and I tell him I want to do the surgery, regardless of the outcome of the IV treatments I’m getting right now. He says the surgeon told him he might be available on Tuesday or Thursday. He’s debating doing another colonoscopy on Monday.

In the meantime, I wait here, IV pumping away, leaving me to ponder how I got here in the first place. It’s a lot to process emotionally in such a short time. However, hopefully all of this will soon spell the end of my battle with a chronic disease.