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I’m still getting used to my new plumbing without a large intestine

Hope you didn’t mind the anatomy lesson.

You might not know this about me, but I have no large intestine. The colorectal surgeon scraped it out during a five-hour (or longer, I don’t really remember) surgery and then I guess they threw it away. I was really hoping to take some pictures with it for Instagram. Maybe do some jump roping with it. But I don’t think that would have happened even had they let me play with it. It seems that it just kind of crumbled, hence the surgeon having to scrape it out rather than just remove it.

For those that don’t know, the large intestine (or colon) is actually shorter than the small intestine. It’s called the “large” intestine due to its diameter as opposed to its length. The small intestine is about 22 feet long and the large intestine is only about 5 feet long. So all I’m missing is that last 5 feet of digestion before it’s goodbye to dinner.

Most of the nutrients from the food we eat is absorbed in the small intestine, so I don’t need to worry about that. The large intestine, in layman’s terms, is basically a poop factory. It takes the “slush” from what the small intestine didn’t use and then extracts the water to create… well, poop. It actually takes much longer to get through the 5 feet of large intestine (about 24 hours) than the 22 feet of small intestine. It’s a slow-moving process of liquid absorption, compaction, and the continued digestion of hard-to-digest foods (like raw vegetables and nuts) as everything makes its way to the rectum. And as anyone who’s eaten corn knows, even after all that time not everything gets broken down.

Hope you didn’t mind the anatomy lesson. I’ve been amazed lately with how little most people, myself included, know about our own bodies. I guess most people don’t want to think about how poop is made. But once that system gets screwed up it’s hard not to wonder about it. Well that, and staring at various charts on various walls waiting for doctors to explain what’s wrong with me before sticking various things into various places just to make sure.

Without a large intestine, the only thing I’m missing out on nutrition-wise is electrolytes. Those largely come from the liquid absorption that takes place in the large intestine. That’s remedied by drinking sports drinks and taking B12 supplements. I also have some hydration drops to put in other drinks.

But more than electrolytes, what I’ve really been missing is raw vegetables and nuts. I can’t really eat those anymore unless I’m willing to risk a blockage or want to endure passing shards of broken nuts. It doesn’t matter how much I chew them either. Without a large intestine, there’s just not enough time to break it down.

Well since I don’t have a large intestine, how do I go to the bathroom? For a while it was with an ostomy. First, I had a colostomy after an emergency surgery to remove a section of bowel. Then, once we figured out my large intestine was beyond repair and the whole thing needed to be removed, I had an ileostomy for a while. Although different, but both operate pretty much the same with a collection bag attached to an opening in the stomach called a stoma.

However, due to the miracles of modern medicine I no longer have any sort of ostomy bag. Instead, I have a j-pouch. That’s the common name for it. The more proper name is an ileoanal reservoir. It’s actually quite amazing how it works.

The first step is removing the entire colon/large intestine. That’s called a total colectomy. Well, I actually had a total proctocolectomy because the doctor also removed my rectum. After that’s done, the surgeon takes your small intestine, folds a small portion of it onto itself, creates a “pouch” near where the rectum used to be, and then attaches the end of the small intestine to the rear exit point. And it can all be done with robots with only 5 or 6 small incisions.

More stories by Robin: 

Fake news? When the media gets it wrong about ostomies 

Overall, the movie White Boy Rick did a fair job in its presentation of ostomies

However, from the previous emergency surgery, I already have a massive incisional hernia from where they cut all the way down from just below my sternum to just above my pelvic region. So for now, I can watch my small intestine move around as it protrudes through the 2-inch gap between my abdominal muscles. Hernia repair is the next surgery.

I’m hoping the hernia surgery goes well, but if not I already know who to call. It’s going to be a mesh repair surgery and there’s a commercial on TV all the time for getting the “right lawyer with the right experience to make sure I get all the benefits I deserve.” But as the surgeon explained to me, hernia mesh repair is one of the most common procedures in the United States and if 1% have an issue (as all surgeries have a risk), that’s still plenty of cases for a lawyer to make a living off of.

The doctor (the same colorectal surgeon) is in no rush to perform the hernia repair even though my belly sticks out like I’m pregnant. My intestinal baby is always kicking around and making loud noises. The doctor said he doesn’t care. Which is good because there’s no reason to hurry. For one, it allows more time to make sure the j-pouch is working, and two, I’ve had a history of lung problems following surgeries, most recently severe pneumonia and a pulmonary embolism (blood clots in the lung).

The hernia repair will be a big surgery since it will require cutting me all the way back open and then pulling the ab muscles together, connecting them with the mesh, and then sewing it all back up. If it were a smaller hernia repair it could be done with a few small incisions. So the surgeon, and me, and my mom have all decided it’s better to wait as long as possible. If they do the hernia repair and then something goes wrong with the j-pouch, then it will mean opening me back up again and being right back where we started.

Back to the lung problems. Those all started when I had a colonoscopy (through the stoma) and got a tear in my bowel that released bacteria into my stomach and lung cavity. What was supposed to be a simple procedure turned into 3 weeks in the hospital with two stomach abscesses, severe bacterial pneumonia, and a collapsed lung. I had a chest tube inserted and had to walk around with a pump the size of an old dual cassette portable stereo. But that was only for 3 or 4 days and wasn’t nearly as bad as the NG tube they stuck up my nose, down my throat, and all the way into my stomach. That was for 3 days too.

That was in May of 2017. I had a total proctocolectomy 4 months later in August and, once again, my colon decided to crumble and release bacteria. So, I got a terrible infection that resulted in terrible pneumonia and was on a slew of antibiotics. (Maybe later I’ll tell you about the insane hallucinations I had. I think it was ciprofloxacin-induced acute psychosis.) This also eventually led to the blood clots in my lungs.

Following that surgery, I had an ileostomy for 6 months. Then the day before Valentine’s Day – more than a year after the initial emergency surgery in December 2016 – the colorectal surgeon (Dr. Khawaja Azimuddin) closed up the stoma and reconnected everything so that I would no longer be pooping in a bag.

The End. Not really. I’m still getting used to the new plumbing. It makes noises all the time. It looks like an alien is moving around inside me. I go to the bathroom 10 times a day (which isn’t bad) and I barely sleep due to gas pains and urges. It gets better though. And it’s amazing that I’m not pooping in a bag anymore. Though I could be again. There’s no guarantee.

Oh yeah. It was ulcerative colitis that ruined my colon. Apparently I’ve had it for a really long time and didn’t know until I started pooping massive amounts of blood and lost almost 2/3 of my blood supply in 5 days and wound up in the hospital for 35 days straight, including emergency surgery on Christmas morning (huge thanks to all the nurses at West Houston Medical Center, anesthesiologists, and Dr. Steven Thomas who performed it that day). The lesson here is that if you start pooping blood and live alone in an apartment, be sure to tell someone.

I guess the saga continues. From December 2016 until today I’ve had more hospital stays and blood transfusions and collapsed lungs and perforated bowels and rectal examinations and blood clots than I could ever have imagined. But I’m still here. So that’s good.