What should I expect after CRS surgery with HIPEC?
If you receive a diagnosis of cancer of the appendix with or without pmp then you might undergo a procedure which is known as cryo-reductive surgery or CRS. This involves a thorough exploration of your abdomen for removal of tumor, mucin, intestine or solid organs such as your spleen or gall bladder. HIPEC may be recommended as an adjunct to the CRS. HIPEC involves perfusion of your abdomen with chemotherapy dissolved in a solution which is heated to 107 degrees F.
As with any abdominal procedure you can expect to experience post-operative pain. The pain medication you will receive will be unique to the institution where you had your surgery. In the hospital, you will initially have intravenous and/or spinal drugs, but over time you will transition to oral medications. Use your pain medication to make yourself comfortable and to enable you to move and walk with minimal discomfort. Try to use only as much as you need and remember that you want to be able to think clearly and get up and about.
Getting out of bed as soon as you can, walking, and deep breathing help to prevent atelectasis, (collapsing of the lung) as well as pneumonia and blood clots. With walking you can hasten the return of gastro-intestinal function. Generally when you awake from the anesthesia you will have a naso-gastric tube in one of your nostrils and fed into your stomach. This tube is put into place when you are under anesthesia. This tube helps handle the fluids of your intestinal tract until the return of its peristalsis or movement. With activity you can hasten the return of your bowel function.
This process will be marked by passing gas from your rectum or having liquid stools. Even without eating you can have liquid bowel movements. The timing of the return of bowel function depends on the amount of surgery done during the CRS and most particularly on the degree of intestine removal. When your gastro-intestinal tract starts to work, the naso-gastric tube is removed and you will be started on liquids. As you tolerate the liquids, your diet will be advanced to soft foods.
Walking also helps your circulation (particularly the veins of your legs) and helps to prevent blood clot formation. As well, you will receive blood thinners and special stockings. A pulmonary embolus, or clot to your lung, is serious and life threatening. Thus, I would encourage you to start walking or at least getting out of bed as soon as your physician says you may do so. Start with getting out of bed and sitting in a chair with your legs elevated but not crossed, to avoid clots from forming in your leg veins. When sitting is comfortable for you and with permission of your physician, start walking the halls. Start with assistance and very short excursions. As you feel better, increase both the distance and the number of walks per day. The more walking you do, the sooner you may be discharged.
When you undergo HIPEC you have had chemotherapy. Your abdomen is bathed in large volumes of solution heated to 107 degrees F. Since your abdomen has undergone trauma both from the CRS and from HIPEC, eating is a particularly difficult problem. Your medical team may be encouraging you to eat but you will find it difficult to do so. Initially very small amounts of bland food should be your diet. If you try to eat large quantities of food you might develop abdominal pain located primarily in your upper and mid-abdomen. You may feel as if you need to vomit. A reasonable starting diet, both in the hospital and continued at home, consists of oatmeal, eggs and toast, A light dinner should consist of small amounts of a protein and some steamed vegetables. Small and frequent meals work best. Drink fluids to maintain hydration. If you overeat and feel discomfort (this may also occur even if you are watchful), you must stop eating. Do not lie down flat because after HIPEC your gut does not empty normally and reflux or heartburn is common. Reflux is the movement of fluid from your stomach up to your esophagus, the fluid is going in the wrong direction. As you feel more comfortable, you can add more and varied food to your diet in a gradual manner. With these dietary restrictions, you will inevitably lose weight. While everyone on your medical team will encourage you to eat more and more in order to maintain your weight and to help in the healing process, this is very difficult to do. Expect significant weight loss. A weight loss of at least ten to twenty pounds is common. Each person has to figure out what foods are tolerable. A word of warning: do not introduce new foods when you are not near a bathroom facility. Over time, measured in months, you will stabilize and be able to maintain your new baseline weight. It takes a long time to resume eating normally as you did before surgery and to start gaining weight. Weeks to months is the usual time period. If you try to rush to eating larger meals, it might set you back. Even a year or so after surgery, you may find that eating more than your usual intake causes abdominal distress.
After any operation, weakness and fatigue are also common. However after HIPEC you probably will feel exhausted. Even if you are in good shape from having exercised prior to your surgery you will feel that you cannot do anything physical. You may sleep more than usual. It is important to resume activities but that must be done very slowly. A five minute walk on a flat surface is a good start. Once you feel that this is easy for you, increase the walk to twice a day or ten minutes. Do not try to do more than you comfortably can in an attempt to “get back to normal,” because that is counter productive. With HIPEC and even minimal CRS ,weakness and being easily fatigued is a reality. Do not push yourself too hard. Time is a great healer. How quickly you resume your work is truly dependent on how much CRS has been done. It takes a longer time to recover if intestinal work has been part of your procedure. If complications occur it will take a much longer time for you to return to full activities. Give yourself at least two months before you try to go back to work or resume full responsibilities in your home.
The physical after-effects are also accompanied by psychological effects. You have had an enormous operation. You may feel poorly and cannot fathom that you will ever get back to your “old self”. As well, the reality that you have cancer and that this is now a new life-long problem is a new reality. You may face further surgery or a round of intravenous chemotherapy. Sadness and depression can understandably occur. You must deal with your mental health because it can affect your physical recovery. There is nothing wrong with admitting that these issues exist. It is appropriate and advisable to seek appropriate help/counseling.
As discussed above, the issue of pain management is quite important. When you are discharged from the hospital, you may receive numerous pain medications. I caution you, the more prescription pain medicine you take, the harder it is to get back to your old self. At home the decisions about medication are up to you and you alone. In the hospital the frequency and dose of your pain medications are carefully regulated. These medications can affect your mental status and can contribute to sadness or depression. Moreover, starting on opiates and remaining on them for a lengthy time can lead to addiction. Each of us has a different perception of pain. However, after some two weeks post-op, the level of pain in part should be able to be handled by over- the- counter medicine. If you have significant pain after two to three weeks, consult your physician since other factors might be present to cause this continued level of pain. Remember opiates dull your mind and affect your body’s ability to function. Appropriate use of pain medications is extremely important to a faster recovery.
Please tailor your recovery to what suits you best. This explanation and these guidelines are meant only as suggestions. I hope they are helpful to you. However most of us who have had this surgery would agree with the descriptions of how you might feel after CRS surgery with HIPEC. Recovery from CRS and HIPEC may be difficult, but it is important to strive for a full recovery and a “normal” life. I wish you well.
Arthur Rettig is a retired pediatric surgeon and PMP patient himself. Despite his medical background, when first diagnosed with adenocarcinoma of the appendix, he didn’t know where to turn. Arthur was glad to have found PMP Pals on the web.
If you have questions you’d like to ask Arthur, send them to firstname.lastname@example.org. PMP Pals has HOPE for YOU!