He came out to the waiting room himself, bypassing the usual call from the receptionist. “Hello, very nice to meet you all,” he greeted my parents and me with a steady handshake, eye contact, smile. Younger surgeon, hopefully in the sweet spot between hand-eye coordination and experience, “come on back,” into his office without an exam, we settled around his desk.

“I’m sorry that you have had such a difficult time with colitis. It has been a tough road for you to this point, yes?”

“Yeah, it’s been a few years now, and we haven’t found a solution.”

“And you are ready to have surgery?”

“Yes, Doctor Mayer said we’ve exhausted our options, and it’s only getting worse.”

“Well, I am very sorry to hear that, but I think you have come to the right place. I spent a long time talking to Dr. Mayer about you, and he thinks you are well-suited for this surgery, and after looking at your imaging, I agree; I think we can have a very successful operation. Your condition is similar to patients who I have been able to help and you actually have an even better outlook than the majority, who are usually older, the average age is early 30s, so your youth is on your side, both in terms of recovery from the surgery and with long-term implications for your body acclimating the pouch.” Malleable clay for the sculptor with the scalpel. “So the first surgery is called a total colectomy, and it is a standard and fairly straightforward procedure. The first thing we do while you are under anesthesia is scope to see the current state of inflammation in your stomach. Then we will use two three incisions, two very small laparoscopic incisions, and one larger incision from which we’ll remove your inflamed colon and attach your stoma. The only part of your colon that will remain is one to two centimeters of rectal mucosa in your rectum, which will allow you to clench your sphincter muscles and retain continence when the J-pouch is hooked up. You have heard about the ileostomy bag, yes?”

“Yes, Dr. Mayer explained, the bag on the front of my stomach, I thought they’re called colostomy?”

“Yes, well since we will have removed your colon, it is not called a colostomy, but an ileostomy, because we will be using your ileum.”

“Ilium?” made their bodies carrion. 

“Yes, the ileum is the last section of your small intestine and it’s called an ileostomy because we are making a stoma at the end, the part intestine that will protrude from your abdomen where the bag will go. It can be intimidating to think about, but it is usually managed very easily, and we have great nurses who will show you how to dress and take care of it.”

“I saw pictures, doesn’t it hurt to have a permanent hole in your stomach?”

“Well at first you’ll have pain killers, but eventually it will heal and should feel entirely numb. You’ll feel much healthier right away, and be able to digest and put on some weight, which is very important. Some patients actually really like having the bag, as they find it gives them the best control of their bowel functions, and there are many patients, especially with Crohn’s, that have to have a permanent ileostomy, or colostomy if it’s made with their colon, and they are able to live their normal lives.” He took out a pad of blank paper and scribbled an anatomic sketch. “So, as I said, you will have a stoma to the right and a little below your navel, and two small cuts in your abdomen here and here for the very small camera and surgical instruments. After we take out the large intestine, we will divert your ileum through this larger incision, to make an end ileostomy, which terminates in your stoma. So, when you wake up, these two smaller incisions will have what is called Jackson-Pratt drains which clear the surgical site of excess fluid, and we will also insert a Foley catheter into your bladder for urination, which will be removed when you are ready to get up and walk to the bathroom again. When you wake up, you will also have PCA pump, that’s patient-controlled analgesia, so you will have a button to press when you feel pain, which will release a drip of pain medication into your IV to help keep you comfortable. You will also have compression stockings wrapped around your legs, which helps to prevent blood clots, most patients find that they are very pleasant, like a massage.”

“How long will the stay in the hospital be?” asked mom.

“Usually about a week if everything goes according to plan, and then we send you home with oral pain medication, which we will want to use as sparingly as possible, and we will arrange a visiting nurse to come see you at your house to make sure that your wounds are healing properly and that you are dressing your stoma correctly. Sound good?”

“Will they come every day?”

“Maybe every other day in the first week, and then you’ll have them on call if you need anything. After the first surgery, you will go home and let your body recover for at least 12 weeks, and then we will do more imaging and if everything looks good, we will be ready for the second surgery, which is called Ileoanal Anastomosis surgery, also known as J-pouch surgery.”

“And when will we know if it will be two or three stages?” asked dad.

“During the second surgery, I will determine whether we can hook up the bottom of the J to the anus, or whether we will need to wait for the body to heal further and then connect them in the third surgery. If we wait for the third surgery, you will still have an ileostomy, but it will be a loop ileostomy as opposed to end ileostomy since we will be using the end of the ileum to create the pouch, so we make a hole up higher in the ileum, and fold it like this to bring it outside of your abdomen. These stomas are a little bit more difficult for patients to manage as they do not protrude as much, but it is usually not a problem.”

“So is the second surgery more difficult from a recovery standpoint?” asked dad.

“We will most likely make a larger incision between the naval and pelvis during the second surgery to create the J-pouch, however if during the second surgery I decide to leave the ileostomy, then it will not be a difficult recovery. When we do hook up the J-pouch, whether it is the second or third surgery, it’s a little more complicated as you will basically have a new intestinal tract that will have to wake up and start to function, and so there are more variables, which often makes it a more difficult recovery. A lot will depend on how the second surgery goes. You will come visit me here after recovering from the first surgery for a post-op appointment, and we will go over the details then. Do you have any more questions?”

“What are the success rates for these surgeries?” asked mom.

“The statistics vary widely with some saying that 75% of pouches are successful, and also some that are 90% or higher. And then it depends on what we mean by success for these surgeries. Mostly we want our patients to be healthier and happier with the pouch than their colon, and for it to work for the rest of their lives, though some pouches can develop complications five, ten, even twenty years down the road, and rarely some patients have to go back to their ileostomy. For my part, I have never had any pouches fail, knock on wood,” he rapped his desk three times, “and here at Mt. Sinai we are on the upper end of all of the success rate metrics. These surgeries are also increasing their success rates every year as modern technology is allowing us to minimize risk and complications and make reproducible results.”

“What are the complications that we should watch out for?” asked dad.

“Well, with any surgery that uses anesthesia there is always a chance for pulmonary edema where too much fluid can accumulate in the lungs, which can cause severe complications and in the worst cases death,” fear death by water, “but in a planned surgery the risk is very low, approximately 1 in 100,000. You will have to sign a waiver that acknowledges you are aware of the associated risks of going under general anesthesia.”

Sign off on acceptance of mortality.

“What about complications in my stomach?”

“There are a wide range of complications from severe to uncomfortable, the likelihood that you will have any particular complication is very low, but the road usually has a couple bumps, so it is likely that you will experience some form of complication, though hopefully they will be minor.”

“What are the severe complications that arise?” I asked.

He looked at me as if gauging how much I actually want to know, then continued carefully, “For the first surgery we will want to make sure that all wounds heal properly and do not get infected, and that you are able to get back on your feet without blood clots forming in your legs or lungs, sometimes we prescribe blood thinner if this is a possibility. After the surgery, you will get an incentive spirometer which helps to gauge your lung function and ability to take deep breath, and your nurses will help you take walks to keep blood clots from forming. In the first days you will have a transparent ileostomy bag so that nurses can look for any problems, like a blockage, so they will look to see signs of gas coming through after the surgery since your stomach will have been emptied with the bowel prep, which you are familiar with from colonoscopies, yes?”

Noxious taste seared into sensorial memory… “Yes. What about the second surgery?”

“Like I said, there are more possible complications with the second surgery, as it is more invasive, and there is some history of damage to nearby organs working in the pelvic area, which for some men has caused them to lose sexual function, but this is very rare, and much less likely with modern surgical techniques.” Possible impotence, snipped fissureking. “But again, after the first surgery I will be well acquainted with the ins and outs of your stomach, and will be able to tell you better what we should be watching out for as we move forward. Sound good?”

I nodded uneasy, playing down the dangers, trying not to stress me out.

“Any more questions?”

“How often do patients lose sexual function?”

“It’s very uncommon and even less reported in males, maybe 3%, but, again that has never happened to me,” three more raps, superstitious? “If you want to, some men go to a sperm bank and have it frozen for later use, but I do not think you need to do that.”

Prevent genetic passdown anyways?

“Is it less common in the three-step surgery?” asked dad.

“The data is hard to evaluate in that case, because three-step surgeries are usually for patients who are more seriously ill, which makes them more likely to have all kinds of complications. But also two surgeries usually means less potential complications than three.”

“I see,” said dad.

Disconnected, “Will anything come out of my butt when my intestines are rerouted out of my stomach?”

“Yes, you can expect for some watery bloody mucus will come out, but not very often, nothing to worry about unless it looks very bloody. Of course, I will be available by phone after the surgery, so you will just give us a call if anything unusual arises.”

“Okay.”

“Do you have any other questions?”

Mom, dad and I looked at each other. “If we have any more, we’ll be in touch.”

“So, you will make three appointments with our receptionist: first is the MRI so I can get the most updated visuals; then you need to make one with an ET nurse to show you how to measure and dress your stoma with the ileostomy materials, and they will mark your stomach with the stoma location; and then the surgery the next few days. Okay?”

“Okay, great.”

“And call us if you have any questions whatsoever.”

“Sounds good.”

“Well it is very nice to meet you, and you came to the right place. We’re going to fix you up, okay?”

“That’s good to hear,” I said with a smile and shook his hand again, steady.

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