Talk to your doctor
Talk to your doctor to optimize your daily living with short bowel syndrome
There are many ways that a medical team can help a patient who has a short length of intestine, or no intestine at all. Dedicated medical centers see many patients living with short bowel syndrome. Dr. Mercer from University of Nebraska Medical Center says: “The more patients you see, the more you do, and the more you learn. The more you learn, the better you can manage the different problems.“
You and your family are the most important members of the multi-disciplinary team
Larger intestinal failure centers are designed to manage patients with complex issues. They have large expertise teams, consisting of e.g. surgeons, gastroenterologists, hepatologists, nurses, physician assistants, coordinators, nutritionists, social workers, pharmacists, and radiologists. However, the most important member of the team is the patient and their family. If they are not part of the team, the team will not be moving in the same direction. Dr. Iyer, Mount Sinai Hospital, describes the importance of such a collaboration: “We should have common goals, we should be able to agree, to disagree. How can we, as a team, help this patient come close to a normal life with all the constraints that this terrible disease might impose?”
Parenteral nutrition is a lifesaving therapy for patients with intestinal failure
You should think of the parenteral nutrition as a burger, fries and a salad which is all placed into an intravenous bag. Eating normal food, you get carbohydrates, protein, fat, calories for energy, macronutrients, micronutrients such as vitamins, minerals, salts. All of those elements are there in a parenteral nutrition bag in addition to the water we need.
What are your hopes for the future
A patient may worry whether they can go back to work, go to college, go to school. The medical team should try very hard to get their patient back to all of those things to the extent possible. Dr. Iyer, Mount Sinai Hospital explains: “We have patients who're back at school on parenteral nutrition, patients attending college or working full-time: full lives that are not defined simply by intestinal failure and parenteral nutrition.”
The overall medical goal is to optimize the patient’s health. The medical team’s intention is to minimize parenteral nutrition to the extent possible for the individual patient. They will try to reduce the time on parenteral nutrition that the patient needs to as short as possible, so that the patient can have more freedom to go about their day without having to be hooked up to an intravenous bag or to a pump.