Frequently Asked Questions
There are some topics that come often in our support groups. On this page, we will attempt to give you some research-based answers to these questions. This section of the webpage is in development and will be added to frequently.
Is the prognosis for short bowel syndrome as bad as doctors make it sound?While previously outcomes were poor, care has evolved so that long-term life expectancy is typical, even for patients with little bowel remaining.
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Will I or my child need an intestinal transplant?With new advances in care, fewer transplants are performed each year. The goal is to avoid transplant. However, many transplant teams also provide intestinal rehabilitation and a referral may be a step to better care.
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Is there a recommended diet for short bowel syndrome?There is no one short gut diet. The best diet depends on individual anatomy. There are a few principles that apply to most patients, however.
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Is every fever an emergency when you have a central line?Patients with a central line are told to go to the emergency room every time they have a fever of 100.4° F (38° C). Even when there is a known cause for a fever, such as a virus, it is still important to rule out bloodstream infection and sepsis.
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How do I get help outside business hours without going to the E.R.?Other families are always happy to support you, but when it comes to medical questions, it's key to know how to reach an experienced clinician when you need one. Most hospitals have on-call doctors that are available 24/7.
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Can you have a central line infection without a fever?Bloodstream infection cannot be safely ruled out based on body temperature alone. Other symptoms such as lethargy, confusion, fast heart rate, shortness of breath, pain, nausea, and abnormal blood pressure should also be considered.
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Can oral antibiotics cause dumping, and digestive upset?Although this issue has not been studied, we receive regular anecdotal reports in our Facebook groups of short gut syndrome patients who have problems with dumping, diarrhea, stomach pain, vomiting, and other digestive symptoms following treatment for routine infections with oral antibiotics, notably amoxicillin.
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Is the STEP procedure right for me?When used appropriately, the STEP procedure is an effective surgical treatment option for dilation. However, it needs to be performed at the right time and in the right way, or the risks may outweigh the benefits. A list of signs that STEP might or might not be right for you is included in this article.
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