Now that I am out of the hospital and recuperating, I’d like to summarize the experience and perhaps give tips to others who might be facing the same surgery.
Hospital Stay
I have never had such an extensive surgery before. I had a pain epidural in my back, a nasogastric (NG) tube in my nose, an IV in my arm and a catheter in my bladder – basically tubes in every direction. I had heard horror stories about the NG tube from other patients so I knew that would not be pleasant. I was lucky enough to have it inserted while I was under anesthesia so I avoided that pain. The tube itself was not painful, just very annoying as it stuck out of my nose and it was difficult to move my head. It caused a lot of mucus to accumulate in my throat and chest and every time the nurse flushed it, I felt the water in the back of my throat. I was thrilled when they removed it on day 3. The catheter was not terribly painful, it was just awkward if I wanted to get up and walk because I had to hang the bag on the IV pole before I would walk anywhere. That was removed on day 4. I was a bit afraid of the epidural because I didn’t really know what to expect but that turned out to be the best thing I had for pain control. It worked perfectly to numb any pain so that I didn’t feel anything in my gut area. I didn’t need any additional pain medication since it was working so well. I didn’t want them to take it out but on day 5 they did because I could not go home with an epidural.
After the surgery, my potassium level was low so they were giving it to me via IV to elevate it. This was the most painful part of my stay in the hospital. Potassium, when given intravenously, can cause large amounts of stinging. I found it unbearably painful, more so than the big abdominal surgery. The nurses had various levels of experience with trying to mitigate this pain – some would dilute it with saline and increase the time that it would drip into me, others really didn’t know what to do about the pain. I was thrilled when I finally passed gas on day 4 so I could take the potassium by pill instead of IV.
My pain levels were never very high, even after the epidural was removed. I’m not sure if I have a high pain tolerance level or if Dr. Clancy did a very good job of avoiding a painful outcome – probably a combination of both. I don’t have a good tolerance for most narcotic painkillers so they sent me home with a prescription for tramadol, which is one of the less potent pain drugs. I have not really had any pain so I am taking only Tylenol at this point.
Post-Surgery Diet Issues
I had spent some time with a nutritionist at Dana Farber before the surgery and she gave me all kinds of information on low fiber diets and sample mini-meals. I started with some small items of solid food on day 5 and was having diarrhea within 10 minutes after eating it. This went on for two days and Dr. Clancy was concerned about releasing me when I was having such a high volume of diarrhea. Meanwhile, I was going crazy walking the halls all day and was ready to get out of the hospital! I was complaining about this on one of the carcinoid message boards and got the best advice ever from a patient in Georgia. I had not heard this from any doctor or any nutritionist or any patient until Monday as I was lamenting the possibility of another day in the hospital.
So, here is what to do to avoid diarrhea immediately after eating: Do not drink for 15 minutes before you eat and for 30-45 minutes afterward. I immediately started doing this and my breakfast stayed down for 2+ hours before I had diarrhea again! I’ve been doing this since Monday and have not had much of the dumping, except when I tried half a banana. I’ll just put that down on my “foods that don’t work” list.
So, 8 days out from surgery, I’m doing pretty well with little pain, a low fiber diet, still having diarrhea but mostly under control. I’m hoping it gets a little better each day.
