I think of myself as a seasoned veteran in the inflammatory bowel disease (IBD) game, as I’ve been living with ulcerative colitis (UC) for almost 10 years and have spent much of my life connecting with this community and advocating for it. I am well-educated on IBD issues, especially those that involve ostomy and J-pouch surgeries, and I pride myself on teaching others about IBD.
So imagine my surprise when I got my first small bowel obstruction (SBO) last month, ended up in the hospital, and realized I really didn’t know anything about this fairly common complication of Crohn's disease (in fact, it’s the most common complication of Crohn’s disease, according to the Crohn’s and Colitis Foundation). And what I did know about SBOs wasn’t necessarily correct. But no more. Now I have first-hand experience to back up my knowledge, and I’m ready to share it with others in the hopes that they won’t be as unprepared as I was.
Here’s what you need to know about SBOs.
Myth #1: Small bowel obstruction is a blockage, and that means there is food stuck in the intestine.
Truth: This one is kind of true, but not the whole story. In the past, when I used the term “blockage” to talk about obstructions, I always pictured a giant piece of food lodged in the intestine, refusing to budge. And while food can definitely be a cause of a blockage, it may not be the root cause, according to the Mayo Clinic.
In my experience, swelling in my small intestine ended up being the main cause. The swelling got so bad over time that digested food began to back up, causing the eventual blockage. The cause of the swelling is unknown, but my doctor said there was nothing I did, or didn’t do, that caused it.
Myth #2: You can almost always solve a blockage at home.
Truth: I was under the assumption that with the magic of a heating pad, some warm tea, and manually pushing on your belly to help kick your intestines into gear, you could solve many if not all blockages at home. It’s honestly so embarrassing to say that now.
I tried all those things when I woke up with severe pain, and none of them helped, and in fact, drinking the tea made it worse because I was completely blocked. If you have a partial obstruction or the beginning of an obstruction, using the above-mentioned tricks may still work for you, but they’re certainly not a cure-all.
After my SBO, I asked the doctor: If this happens to me again, do I need to come into the hospital? He said yes, that my pain will be better managed at the hospital and that it may take less time to get the blockage moving with the help of a nasogastric tube (NG). Bottom line: Any time a patient has severe pain, nausea and vomiting, they need to go to the hospital immediately.
A true small bowel obstruction is a surgical emergency often times requiring immediate surgery once diagnosed with a CT scan. For only those who are not considered an ideal surgical candidate or in "possible SBO" reported on imaging or partial SBO, conservative management may be recommended, namely NG tube decompression, gut rest, and Nothing by Mouth status (NPO).
Myth #3: The symptoms of a bowel obstruction are always pain and the inability to poop or pass gas.
Truth: It’s true that the inability to poop or pass gas are very common symptoms of SBOs, according to the Mayo Clinic, and they should not be ignored. For me, though, it was different: I didn’t have those symptoms until it was too late. I woke up at 2:30 a.m. with intense abdominal pain, and it wasn’t until then that I realized I was unable to pass anything. But when I thought about later, I realized my body had been giving me some tiny hints that something was wrong before that, but I just hadn’t known what to look for.
Symptoms of an SBO can also include unexpected heartburn (which I did have, even though I hadn’t eaten anything that would usually have caused heartburn). Another symptom is, for lack of a better term, really disgusting burps—at least in my experience. I’m talkin’ like very stinky, frequent burps. My husband made a joke to me that night that my burps were particularly gross, which is unusual for me—but again, it didn’t seem like anything to be concerned about. The heartburn and burping were baby symptoms of the growing problem in my stomach, and now that I know of those symptoms, I’ll be much quicker to act to prevent the full blockage next time.
Myth #4: Surgery is reserved for only worst-case scenarios (like total obstructions, not partial ones).
Truth: This is simply not true. More than half of all SBOs will resolve with conservative measures, such as NG tube decompression and gut rest. After my CT scan in the ER, I was told that it wasn’t a certainty that I’d need surgery but that they were admitting me onto the surgery floor just in case. In fact, the prospect of surgery didn’t to go away until I had already been there for a few days—but at no time did my medical team make it sound like my blockage was unusually serious or threatening.
Turns out, surgery is reserved for when nothing seems to be improving, but it’s not necessarily dependent on the severity of your blockage, per Harvard Health. So: If you have a partial obstruction, but a nasogastric (NG) tube and bowel rest are not helping to improve it, surgery may still be on the table. If you have a complete obstruction, but after a few days it starts to break up or move, surgery will likely not be necessary (as was the case for me).
Myth #5: NG tubes aren’t that bad.
Truth: Can I be frank? NG tubes are the worst thing ever in the history of ever (at least in my experience). In all my years of IBD living, I’ve somehow managed to evade the dreaded NG tube, so everything I knew I had learned secondhand. An NG tube, according to Harvard Health, is a flexible, lubricated tube that’s inserted into your nostril and then goes down your throat and into your stomach for the purpose of decompressing the stomach and part of the small intestines that gets dilated in front of the blockage so there is less pressure tightening the area of blockage. It also happens to suck out anything that is lingering in there due to the blockage. It helps to remove pressure and makes less work for your body.
I’ve heard my friends say how awful an NG tube feels, but most things in the hospital are awful, so I didn’t think it was anything worse than the norm. I was wrong. Maybe I’m speaking for myself, but the NG tube was one of the worst medical experiences I’ve ever had. It was painful, uncomfortable, and really, really annoying. There can definitely be value in having an NG tube in these situations, but I sincerely hope to avoid them from here on into forever.
The Bottom Line
Despite being part of the IBD community for many years and being very connected to other patients, there are apparently still things I don’t know about IBD. I’ll admit there’s part of me that feels stupid and even shameful about this, because I’m worried that I may have minimized the experiences of other people in the past because of not knowing.
So take this as a friendly reminder to every patient and advocate out there: Our experiences are not always that of our community. That’s why we need to remember to be open to continually learning about our own conditions all the time.