Exhausted anemic lack of nutrition, life-adjacent, can’t take the subway anymore. Dropped off again at Mt Sinai doctor offices, ding up the elevator, check-insurance desk, same waiting room so many times. Eyes shut…

Nurse came to get me from the waiting room, weighed me in at 135 and took my vitals with a smile, must be hard to stay positive seeing sad sick people all day. I sat on the examination table, mom came in, put her bag down, and took out her note tablet and pen, scene repeated ad nauseum. Doctor Mayer walked in.

“Hey, how are we doing today?”

“I’m okay, I think a little more energy than last week.”

“Mmm, I’m glad to hear that, but we’ve got to find a solution for you, 135 is way too low.”

Cursory examination laid back cricklecrack on the table, light prods on the stomach he knows uncomfortable by my reaction, core contraction. “Left lower quadrant fairly tender,” he said to himself. “How many BMs per day?” 

“About a dozen.”

 Checks respiratory with stethoscope and flashlight in ears and Ahhhhh… 

“Looks like the thrush has gone away.”

“Yeah, I can taste again.”

“But I don’t like these sores in the corners of your mouth…”

 Mom handed me chapstick as he looked at my information on the computer, statistically speaking, “Based on your numbers, the cyclosporine helped a little bit, but your condition continues to be refractory unfortunately, your iron levels are down, as well as your albumin.”

“My what?”

“Albumin in your intestine, it’s a protein. Not a good sign. And your blood platelet count is going up, which is indicative of more inflammation, which means that the cyclosporine is slowly losing its effectiveness.”

“Why don’t you think it’s working?” asked mom. 

“I’m not sure. The drug binds to the protein cyclophilin, which then deactivates T cells from attacking your system, and it seems to be doing that to an extent, but it might not be enough to turn around the severity of lesion development. So, I hate to say it, but we’re running out of cards to play here. As we discussed previously, we could give Humira another shot, but my concern is that your body has built up too many antibodies for it to be effective, and you’ve been sick for so long. In my opinion, our best option at this point is to surgically remove your large intestine and try for a J-pouch. I didn’t want it to come to this, really thought we could get you under control with medication, but sometimes it’s just not enough.”

“What about the fistula? You said it was indicative of Crohn’s and that meant that the surgery might not work, so it kind of feels like a last resort.” I asked.

“Well, yes fistulas are more common with Crohn’s disease but can appear in cases of ulcerative colitis as well, and the majority of your symptoms present as colitis. The main determining factor is that despite your protracted periods of inflammation, your small intestine has been healthy the whole time, and specifically your ileum, the last section of your small intestine that is used to create the J-pouch, so I still think you are a good candidate. We would have you go for an MRI before the surgery to confirm that your ileum is still clear.” 

“But the diagnosis could still turn out to be Crohn’s disease and then the surgery wouldn’t work?” asked mom.

“Well, Crohn’s disease patients often have surgeries to get rid of problem areas, and getting rid of your colon would improve the prognosis for future complications.” Doesn’t want to say more time waiting sick higher chance inflammation turns cancer. “So the first surgery could become compulsory at some point regardless of diagnosis. Also, you should know that you would feel much better right away, you’d regain weight and energy within a couple weeks and feel a lot closer to your normal self. Your small intestine would be rerouted to the front of your stomach where you’d have the ileostomy bag, have you seen one of those?” Don’t think I could play contact sports, cut through my core.

“Yeah, one of my roommates in the hospital had one.” 

“They’re a little strange at first but very manageable, you could even go to college with one if you had to. But on the off chance that it is Crohn’s then your ileum could potentially develop inflammation down the line, and we would deal with that if it arises. We typically do not perform the surgery on Crohn’s patients because they develop inflammation in the pouch, and then there are no improvements on their condition, so the pouch fails and they have less intestine to work with at that point.” 

“So what would be the course of action if the pouch fails?”

“Then you would most likely have a permanent ileostomy and we would treat flares with medication.” Physiology altered, plastic bag for a colon. “But like I said, you do not have any history of inflammation in your small intestine, so there’s a good chance that the surgery will give you a better long-term outlook. It will let you avoid lifelong dependence on steroids and powerful immune compromisers.” 

“So I wouldn’t have to take medications if the surgery goes well?”

“That’s right, if things go as we expect, the surgery can be essentially curative, which is why I think it’s a good option for you at this point. One caveat is that often patients develop what’s called pouchitis, inflammation of the pouch, but that gets treated with a course of antibiotics, which clears it up within a week. But other than that, you would be healthy and medication-free, and that is the most likely outcome for you.”  

Hard sell on the surgery, but no guaranteed refund.

“Could the pouchitis turn out to be Crohn’s?” I asked.

“Well, the first incidence we would assume to be pouchitis, as it’s fairly common in ulcerative colitis patients with J-pouches, but if the antibiotics don’t work, or there is frequent flare recurrence, we would perform an endoscopy and biopsies to diagnose, and then take steps from there. But some cases of Crohn’s never end up affecting the small intestine.”

“How many surgeries will there be?” asked mom.

“The J-pouch surgery is completed in two or three steps, your surgeon will decide the best course for you. Since you’re young and otherwise healthy, I think it can probably be done in two steps, but you’ll be able to get more detailed information from the surgeon, have you looked into our gastro surgeons here at Mt. Sinai?”

“Not yet, we’ll have to check to see if they’re all covered under our insurance.”

“Okay, our colorectal surgeons are some of the best in the world, and when you get more information about the process it should feel less daunting.”

“Okay, will do, thanks.”

“Hang in there, we’ll get you feeling well and back to school eventually. Keep in touch, see you soon.”

Shake hands, cool moist palm.

“Are you doing alright?” I asked, “I heard your receptionist say you’re only coming in twice a week and not taking new patients.” 

“I’m alright, I do have some medical issues of my own to deal with, but I’ve got it under control. Don’t worry.”

“Okay, hope you feel better.”

“Thanks, I’ll be fine. Next time I see you I wanna see meat on your bones, okay? Whatever sounds good. If that means a grilled cheese with bacon, then go for it. Any kind of calories you can handle are good.”

“Ha, okay, you hear that mom?” 

“Won’t the grease be bad on his stomach?” 

“It should be okay. We want a little bit of protective fat for him, it’ll help.” 

“Okay, if you say so.”

“Thanks Dr. Mayer.” 

He shook our hands again and closed his office door.

– – –