If you or your child is facing a new diagnosis of short bowel syndrome (SBS) and receiving IV fluids, chances are you have questions. Here, Joe Forrester, MD, a surgeon at Stanford Medicine who cares for patients with short bowel syndrome, addresses some of the most common concerns for patients.
Q: Does the treatment for SBS vary depending on the cause of the condition?
A: To a certain degree, yes, but also no. Ultimately, the problem in SBS is that there isn’t enough intestine to absorb the nutrients that are critical for the body. You don’t have enough small bowel to absorb nutrients. That’s what needs to be treated, no matter what the cause. But if, for example, your SBS was caused by an enterocutaneous fistula – an abnormal tunnel that forms between your intestines and your skin – then that might be treated with surgery. But if it’s from bowel that has been removed, that would be treated with a small bowel transplant or Gattex, which is a synthetic form of a natural gut hormone that helps the gut better absorb nutrients and fluids. We might also use somatropin (Zorbtive), an injectable human growth hormone that helps improve gut absorption and reduce reliance on IV nutrition. GLP-2 drugs are also injectables that help improve gut absorption, such as teduglutide, and newer long-acting GLP-2 analogs like apraglutide and glepaglutide that are in late-stage development. But, at the end of the day, most of the care is what we call supportive care, which is supplementing nutrition with total parenteral nutrition (TPN); using anti-motility agents, which slow down the movement of the gut; and potentially considering something like Gattex.
Q: What does supportive treatment involve?
A: It runs the gamut from additional IV fluids, which would help the patient rehydrate, to TPN, which provides not just fluids but micronutrient support – because the issue with SBS is both a difficulty absorbing fluids and also absorbing nutrients. Often, patients who have short gut, which is another name for SBS, require additional IV nutrition support to meet their caloric needs and micronutrient needs. Supportive treatment can also include octreotide, an injection used to treat severe diarrhea; anti-diarrheals, like loperamide (Imodium) and crofelemer (Mytesi); and antacids known as proton pump inhibitors, such as omeprazole (Prilosec).
Q: Does all of this mean that a person living with SBS is connected to an IV all day every day?
A: That depends on the patient. It depends on how much remnant intestine a patient has; how fast food moves through the intestine; and what area of the intestine is still available. Some patients require daily TPN. Others require it once a week or a couple times a week. It all depends on the patient.
Q: Do people who require IV nutrition have to travel to a clinic to get connected to an IV every time, or can they receive the nutrition at home?
A: It depends on the patient’s resources. Some people have to travel to a clinic to have it done. Some people are able to do it at home. Some of them may require home health nurses to help them with that. It depends on the patient and the health system. Some patients may not be able to hook themselves up to an IV. So they might be more dependent on the health system for that. Or they might not have the insurance coverage to allow for home health nurses.
Q: For people who only require IV nutrition a few days a week, can they eat normally the rest of the time?
A: Yes, often people with SBS can still eat normally. But they might not absorb as much as they need to meet their nutritional requirements, so they need additional IV nutrition.
Q: What are the challenges of treatment?
A: There are a few. The first is associated with the rapid movement of – for lack of a better word – “intestinal stuff” through their GI tract. Some patients with SBS have an ileostomy, where a piece of their intestine has been rerouted to a hole made in their abdomen (belly area) and waste will exit the intestine through this hole and collect in a pouch on the outside of the body. Patients who have an ileostomy may have a very high ileostomy output from drinking sugary liquids or from a GI tract infection, which is a common complication of SBS. You can get dehydrated very quickly from this high output.
The same is true in patients whose small intestine has been connected to their rectum or colon. They can have high-volume diarrhea, which gets worse with sugary liquids or if they get a GI tract infection. When they have a lot of diarrhea, that makes things more difficult for them.
If a patient is dependent on TPN, there are all sorts of complications that can occur from long-term TPN use. Patients can get line-associated blood infections, when bacteria or fungus enter the bloodstream through the catheter. They can get clots caused by the catheter.
There are a lot of challenges. It’s not an easy path to walk. My heart goes out to people who are dealing with short bowel syndrome.
Q: Do you have to follow a special diet when you have SBS?
A: Yes, that’s another one of the challenges. Frequently, people with SBS have strict dietary requirements, whether it’s making sure they get enough fiber or avoiding high-osmotic liquids, like sugary drinks.
Q: What are anti-motility agents, and why do people with SBS need to take them?
A: When the intestine is shorter, things are moving through faster. There are a couple of different oral medications that can be used to help slow the transit through the GI tract, which gives the intestines more time to absorb fluids for hydration and nutrients.
Q: Does SBS progress or get worse over time?
A: It doesn’t necessarily get worse, unless maybe you have to have more bowel removed or had some other injury that further reduced the amount of small intestine you have. But there are many long-term complications associated with SBS that can complicate care. Besides those mentioned earlier, such as infections, diarrhea, and high-volume ileostomy output, you can also develop liver problems with long-term TPN.
Q: Can you live a normal life with SBS?
A: I think it’s a spectrum. I have patients who have gone back to living normal, healthy lives, and no one would know they have short gut syndrome. I have other patients who are on medical disability for life because of the challenges associated with it. The problem is that, at some point in life, for all of us, there will be medical complications that arise and have an impact on day-to-day life. I think those things may be more common in people with short gut. But, yes, people can go on to live pretty normal lives, depending on how much intestine they have.
Q: How do people face the emotional challenges of living with short gut syndrome?
A: Because it’s a chronic medical condition, the psychosocial behavioral response varies so much from person to person – just as we all have different responses to stressful events. I’ve seen patients who adapt very well, from an emotional standpoint, to living with this chronic condition. And I’ve seen patients who have a much harder time. Those who adapt more quickly and accept early the increased responsibility that comes with living with short gut syndrome tend to do better overall long-term.
