Question: Must you have an operation to test the effects of Duodopa®?
Answer: No, the effect of the medicine is achieved by it being directly and continually administered to the intestine. This means that you have the possibility to test the effects by placement of a thin tube via the nose into the intestine.
Question: How long time does it take to test the effects?
Answer: The time needed to reach optimal effect is dependent on what combinations of medicines have been previously used. If only L-dopa medicines (Madopar® or Sinemet®) have been used then optimal effect can be obtained within a couple of days. If a dopamine antagonist with a long half-life has been used, however, it can take up to a week to obtain optimal effect since the pump dose must be adjusted upwards in step with the slow decline in effect of the antagonist. The effects of Duodopa® can often be felt already after the first day.
Question: How is the Duodopa® treatment made permanent?
Answer: To make the Duodopa® treatment permanent a PEG operation is performed under local anesthesia. The patient is awake during the entire procedure. Sedatives and muscle relaxants may be administered when required. A gastroscope (“stomach scope”) is inserted into the stomach via the mouth. A lamp at the end of the gastroscope shows through the skin. A small perforation is performed from the outside towards the lamp inside the stomach. The PEG tube is then positioned. One end of the PEG tube has a plate that will be in contact with the stomach wall. The inner tube is inserted in the PEG tube and positioned in the duodenum/small intestine using the gastroscope.
Question: How is the dose set?
Answer: Under a period of one week the Duodopa® effect is tested and the dose set. After a treatment period of a few weeks or months it is possible for the receptors to adapt to constant stimulation and so the dose may even need to be reduced. Another factor is that the patient´s movements are different in the home environment, which may also require some adjustment of the dose afterwards.
Question: Is the PEG operation risky?
Answer: All surgical intervention may involve complications. However, PEG operations have very few complications. There is always some irritation of the peritoneum during the operation, which can cause some discomfort. Very occasionally the operation may cause peritonitis, which may require the period of post-operative care to be extended. The throat, gullet or gastric mucous membrane may be injured by the gastroscopy but this is very uncommon.
Question: How do patients usually feel after the operation?
Answer: Most patients feel all right after the PEG operation but naturally there is some pain associated with the wound. Usually the pain is not severe and it is treated with ordinary painkillers. The pain usually disappears completely after a day or two.
Question: How soon after the operation can you start using Duodopa®?
Answer: You can start using Duodopa® immediately after the PEG operation. It is advisable to begin with a slightly reduced dose to avoid involuntary body movements (dyskinesia). The operation wound will hurt and involuntary movements of the torso should not be allowed to compromise the healing process.
Question: Can you resume normal eating habits after the operation?
Answer: Different surgical clinics have different eating restrictions following a PEG operation. Only liquid food should be ingested the first 24 hours after the operation so that the wound may heal properly. You can start eating normal food from day two after the operation. Fried food is hard to digest and should be avoided.
Question: Is there any risk that harmful substances may leak from the tube and into the body?
Answer: The tube is made from polyurethane and there is no indication that it yields harmful substances into the body
Question: Can the PEG hole give problems?
Answer: The wound heals within a couple of weeks after the operation and a so-called fistula is formed where the tube sits. This means that there is a hole into the stomach.
Gastric juice can leak out in some cases
Action: Protect the skin around the hole by lubricating with a fatty salve
Irritation and redness around the tube hole can occur
Action: See above
Proud flesh can form
Action: Silver nitrate can be used to slow this down
Small local infections can occur
Action: Clean the hole carefully and change the bandage when needed. Allow nursing staff to take a look and obtain a sample for growth and typing for possible treatment with antibiotic agents.
Question: For how long can a tube be used?
Answer: The tubes do not have an expiry date. Experience from patients treated with Duodopa® show that the outer tubes can be carried for several years without change. The inner tube is sometimes changed when its position is adjusted but it too may work for several years. There is very little information in the medical literature about long-term tube usage. The most common tubes are the ones applied for feeding in severe neurological and cancer diseases, where survival times are relatively short.
Question: Can you have a shower or a bath with the tube and pump?
Answer: The pump is not waterproof and must be disconnected before you have a shower or a bath. You have to try out for yourself just how long the pump can be disconnected without stiffness becoming a problem. You may also administer an extra dose just before disconnecting the pump so you can manage longer without infusion. Remember that loss of movement can come suddenly when the pump has been turned off a while. Do not swim too far out or into deep water if bathing outside. It does not matter if the tube gets wet. Take the opportunity to clean the tube hole with soap and water.
Question: Can the tube be removed if you want that?
Answer: Yes, the tube can be removed if Duodopa® therapy is discontinued. The small opening will close instantly and grow together to form a tiny scar.
Question: Can substances other than Duodopa® be administered through the tube?
Answer: No, you should not inject any other substance than Duodopa® via the tube! There is a risk that objects, e.g. small tablet fragments or food particles might block the tube, requiring that the tube is changed. It is certainly possible to infuse particle-free liquids, e.g. nutrition formulas via the tube but in this case, this must be done only in the evening when you anyway stop treatment.
Question: Why does the tube become discolored?
Answer: Discoloration comes from gastric juices that are forced up between the outer and inner tube.
Question: What are the most common problems with the tubing system?
Answer: The most common problem with the PEG tubing system is that the inner tube-end may move from the duodenum and into the stomach. This will render the medication more varying in therapeutic effect, much like with tablets, because the contents of the stomach pass into the duodenum at irregular intervals. Mostly the change in therapeutic effect will make it apparent that the tube has been displaced. Sometimes the tube gets blocked, the pump will alert for high pressure and rinsing with water becomes difficult. The most common explanation is a kink in the tube obstructing the flow. Other explanations may be depositions on the tube wall or outflow obstruction caused by food particles.
Question: How often and why is the tube pulled back into the stomach?
Answer: Whether the tube stays in the correct position or not depends very much on the individual. Some patients have no tube-dislocation problems at all and some have to readjust the tube position several times per year. A study in 1998, in which 28 patients were treated with Duodopa® for a total of 1045 months, counted 162 cases of tube readjustment, or six times in three years for the average patient, i.e. one adjustment every six months. From our experience most of the problems with the tubes show up in the beginning of the treatment. After that it seems like the duodenum gets used to keeping the tube although this is not scientifically established. Why the tube fails to stay in the duodenal position is not completely clear. One reason may be different instances of “reverse” movements of the duodenum. All people look different, even on the inside, and likely all have different prerequisites to having a tube in the alimentary canal. The PEG may also form an extra loop inside the stomach, which may dislocate the tube end.
Question: How often do you have to revisit the hospital?
Answer: Revisiting intervals are different and depend on both hospital and patient. A revisit is advisable a month or two after the operation for early follow-up and dose adjustment. Thereafter it is sufficient to revisit three and six months after the operation. If your condition is good and the dosage is adequate the intervals between revisits may be even longer.
Question: What is the liquid that sometimes trickles out when the tube is open?
Answer: Water used for rinsing in the evening will remain in the tube overnight and may trickle out when the tube is opened. Sometimes the water is mixed with gastric fluid. It is therefore advisable to avoid having skin contact with any liquid that comes out of the tube.
Question: Can the tube sit too far down the intestine?
Answer: No. The aim is to have the tube sit as far down in the small intestine as possible, and the only thing that is important is that the tip sits below the lower pylorus.
