Wednesday, September 25, 2013

One Week Post-Op - Thoughts and Experiences

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.

Wednesday, September 18, 2013

Surgery is Over

The surgery seems to have gone well.  Instead of a hemicolectomy, they left my colon alone but removed two large tumors plus about 100 cm of my small intestine.  The doctor did not remove my gallbladder which is ok with me because I'm not having any trouble with it. Dr. Clancy said that he got 90% of the tumors out which is excellent.

The recovery could take time.  I still have a NG tube and about 4 IV's with different medications in them.  I still have a catheter as well.  They are also giving me  heparin to avoid blood clots and I still have an epidural for pain management.

I've been up and walking around and out of bed in a chair for the better part of the day.  I am quite fatigued though.  I will follow up when there is something new to report and I am feeling a bit better.

Wednesday, September 11, 2013


My surgery is now less than a week away. Next Tuesday morning, I am scheduled for an exploratory gastrointestinal operation. I will find out the exact time next Monday.  I understand that the surgeons will be potentially performing a right hemicolectomy, removing my gallbladder, several large tumors, affected lymph nodes, and part of my small intestine.  I’m not used to having medical procedures where I do not know exactly what is going to happen, so this is causing me quite a lot of anxiety.  I’m concerned about long-term side effects of such a large surgery.  Nonetheless, I have been putting it off for quite a while now, and I am ready to do it, even though I am quite scared. 

I had my pre-op appointment last Friday and came out with a clean bill of health – all systems are go.

I’ve been listening to the mind-body relaxation techniques from the Peggy Huddleston book and CD’s.  They help me relax and refocus my state of mind more positively.  They also put me to sleep sometimes – I guess that’s a good thing because I need to keep myself healthy.

I’m also trying to stay away from too many people so I don’t catch anything before next week. 

Dr. Chan’s office gave me a prescription for Ativan. I have been having trouble sleeping with my anxiety about the surgery.  I have not taken it since we were in Boston last week.  I think just being in Boston reinforces my nervousness.  When I am home in New York, I’m usually pretty busy so I haven’t focused as much on next week. 

I have been speaking with a nurse from Aetna. This is a free service offered by my health care provider.  I’m not sure if it has been that helpful.  Yesterday, she told me that the doctor yet to submit my “case” to Aetna yet.  I didn’t understand exactly what that meant.  Aetna is a PPO, not an HMO, so I was not sure what needed to be done before the surgery.  I tried to get her to tell me how doctors typically submit a “case” but she did not know. The nurse stated that sometimes submissions come after the surgery.  This was all very confusing. I really don't know what, if anything, I should be doing with this information (or lack of it!) so I am not doing anything. 

I also emailed my disability case manager at my company to see if they received my FMLA form from Dr. Clancy’s office but she did not get back to me. What a surprise…hopefully, all is ok or perhaps someone would have told me there is a problem.

In spite of this bureaucratic complexity with the insurance companies, I am doing relatively well. I really can’t wait until this is over with.  I will try to have a family member post how I am doing after surgery and will follow up when I am well enough to type and think again.

Please think of me and send healing thoughts my way next Tuesday!