Short Bowel Syndrome
People like Marek Lichota prove that it's possible to lead an extensively normal life even after experiencing stomach and intestinal failure. Due to the chronic illness Crohn's disease, Marek had to have a majority of his bowel surgically removed. Despite his so-called short bowel syndrome, however, Marek became a father again after the operation. Moreover, he works, plays sports and even travels to faraway destinations.
"The route to normalcy is not always easy, and requires patience. A lot depends on the progress and intensive support provided by a nutritional specialist," Marek says. Dr. Michael Adolph, anesthesiologist and nutritional physician, explains what makes the difference.
Dr. Adolph, what are the stages a short bowel syndrome patient goes through after their operation?
There are a total of three phases that the patient goes through after their operation. In medicine, we refer to them as hypersecretion, adaptation and stabilization.
The first phase of hypersecretion is characterized by a high rate of fluid loss and diarrhea. During this period, intravenous hydration and parenteral nutrition is absolutely required, because it's the only way to compensate for the losses. The fluid and nutritional therapy is continually carefully modified throughout the process so that the remaining bowel can heal and adapt to the altered situation.
Over a period of up to 2 years, there are usually significant improvements in fluid and nutrient uptake. This means that the artificial nutrition administered through the veins can be slowly reduced. How well this proceeds depends on the type and extent of the remaining small intestine and the nutritional therapy that has been performed, among other things.
Once this phase of adaptation is completed, it is followed by an extended period we refer to as the stabilization phase. The patient begins to gradually consume food normally. Nevertheless, we must monitor this closely, because even if the patient is sufficiently supplied with macronutrients (fat, carbohydrates, protein), it is important that they can also take in sufficient minerals and micronutrients (trace elements and vitamins).
If I'm understanding you correctly, very intensive medical support is required at the start. Does that remain the case?
That applies particularly to the phase of intravenous hydration and parenteral nutrition. In this early phase, the patient requires close medical support and, of course, expert medical nutritional advice from a nutritional team. Marek is fortunate not to have a stoma. If a patient has a ostomy system, however, which is sometimes the case, the attentive support of stoma specialists is also required.
Of course, the patient will learn to deal with their stoma and the problems of so-called short bowel syndrome, gradually becoming independent over time. Nevertheless, they will need medical support for an extended period, also at home. In the case of in-home parenteral nutrition, trustworthy collaboration with a home care company is essential. This is managed in the hospital before discharge by discharge management. Hospitals are legally obligated to do this as of October 1, 2017!
Once the stabilization phase has been reached, what should short bowel syndrome patients look out for?
In this phase, special attention must be paid to vitamin and trace elements, in addition to the supplying of macronutrients through food. For example, in the case of removal of the last section of small intestine (terminal illeum), intramuscular administration of vitamin B12 can be necessary. The uptake of liposoluble vitamins (ADEK) is also problematic; intramuscular administration can also be required here. Minerals such as zinc, iron, magnesium must often be substituted in higher dosages.
Can you provide any tips?
There are lots of tips, most of them relating to the right fluid intake and supply of minerals. The right selection of food can help to prevent a lack of electrolytes, trace elements and vitamins. The patient should always receive customized consultation and support. Special cooking courses offered for patients after major surgical interventions can also be helpful. I think it's important to give patients a feeling of security, through the personal attention of doctors, stoma specialists, nutritional teams and home care companies. That's the only way patients will learn to handle this completely new situation, like Marek, and to master their own future!
Associate Professor Dr. Michael Adolph
Associate Professor Dr. Michael Adolph is a nutritional physician. He has made significant contributions toward establishing artificial nutrition in Germany. The anesthesiologist and intensive care practitioner established a permanent nutritional team at the University Hospital Tübingen. In his free time, he passes on his experience in cooking courses for people who have had major abdominal surgery. The cooking courses are held with Munich's star chef, Alfons Schuhbeck. Adolph is an active Board Member of the German Society for Nutritional Medicine.