Bowel obstructions

I haven't been eating well. On New Year's Eve I bought a bunch of snacks to eat while we waited for midnight, but after a couple slices of pizza around 7 o'clock I was full and my appetite didn't return in time to enjoy all the munchies.

A few days later I had terrible abdominal cramps. I've had them a few times in the past several years and found they were caused by intestinal blockages. What happens is that some stool in my colon gets too dry and hard, digested food backs up behind it and the cramps are failed attempts by the intestines to push it all out. Those episodes were solved with saline enemas, so I tried that again, got things moving, and felt better.

But a few days later it happened again. I'm afraid that it's harmful to do frequent enemas (and it's tricky to do enemas without a rectum), but I administered another one and cleared the problem again.

The obstructions kept repeating. Now I didn't have feelings of constipation, just bloating, intestinal gurgling, and nausea. Rather than ending with a stubborn bowel movement, these episodes ended with vomiting.

Such problems are common with patients like me. Abdominal surgery, chemotherapy, and radiation can all lead to scars and inflammation that prevent the intestines from moving normally and resulting in obstructions. My doctors recommended managing the problems through diet – low fiber, low residue, stool softeners, avoiding bulky foods like raw vegetables or nuts.

Yet the obstructions continued. I went to the emergency room, and after a CT scan they diagnosed me with a small bowel obstruction. They put in a nasalgastric (NG) tube to suck out the stomach contents so the bowels could rest for a few days. During five days in the hospital, they transitioned me back to soft foods and sent me home. Then just a day later I obstructed again.

I was getting desperate since I was losing weight rapidly and wasn't accomplishing anything in my life except struggling to eat, feeling sick, lying on the couch, watching TV, and waiting to get better. So I contacted the abdominal cancer specialists who did my big surgery in December 2008 to see if they had any solution.

They were reluctant to operate since they said it's very risky to operate on someone with such an extensive history of treatment as me. If the root cause is scars from previous surgeries, then another surgery is as likely to cause new problems as to fix existing ones. And the doses of radiation since my previous surgery could change the tissues and prevent them from healing properly.

But I couldn't simply continue failing to eat and losing weight, so they admitted me to their hospital to prepare for surgery. I went on a clear liquid diet plus Ensure (a nutritional supplement drink) while we did some gentle bowel preparations over the course of a few days. We also tried putting me on total parenteral (TPN) intravenous nutrition for three nights. During that week I didn't obstruct again, so the surgeons decided it was better to send me home on a diet of Ensure and go searching for an effective chemotherapy. From their perspective, if I could live without surgery it was better not to risk it.

So I continued that diet at home (without TPN) yet continued to lose weight. I added some simple foods like crackers and low-residue cereals which certainly helped stimulate my appetite. But then I began having episodes of obstruction again and continued to lose weight.

My radiation oncologist doubted that these obstructions were symptoms of his radiation treatment, so the prime suspect has become cancer itself. I met with a team of doctors at NIH about enrolling in clinical trials, but most of their drugs are oral so my inability to eat reliably makes me a poor candidate.

December 2009

April 2010

In April my medical oncologist finally decided that we had to do something other than let me continue to starve and wither, so we started chemotherapy with continuous intravenous 5-FU.

So far I've received two weeks of chemo and tolerated it okay, but I'm continuing to suffer obstructions and lose weight. I fear that we'll have to take more drastic steps to get nutrition if this continues. We might set up for home TPN, receiving intravenous feedings at night. But that sounds like a lot of work and inconvenience, making me even more homebound and preventing me from engaging in the travels that are so important to my happiness.

Currently I'm trying the medication Reglan to try getting my intestines to push in the right direction and allow me to get enough nutrition the old-fashioned way.

I want to eat.

Those fiendish cells

The protein called carcinoembryonic antigen (CEA) speaks volumes about my battles with cancer. I wrote about it twice before:

Cancer quantified (2007)
Resurgence (2008)

Today I have an update tracking the concentration of that protein in my body over the past five years.

When chemotherapy stopped holding down the cancer in late 2008, I traveled to Baltimore for a heroic surgery to remove the two big tumors and apply heated chemotherapy drugs to kill any stray cells. My surgeon was pleased that he was able to remove the tumors without too much destruction, but there was one area at the back of my pelvis where he worried that some cancer cells might still be hiding.

So our plan was to let me recover from surgery and then follow up with chemotherapy or radiation to clear out that trouble area. The big drop in CEA in January 2009 shows that the surgery was effective in reducing the tumor load and a CT scan in February looked good (for a person who has been reassembled a couple times already).

In the following months my CEA climbed back up to the limits of normal (5 nanograms per milliliter), solidly abnormal (over 10 ng/mL), and now stratospheric (633 ng/mL). Scans in May showed a tumor at the back of my pelvis eroding my tailbone and another sitting on the pubic bone in front of my bladder.

I've spent the last few weeks scurrying to figure out the current situation and choose the best plan of attack. The leading contender right now is radiation, first to the tailbone and then to the pubic bone. I'm hoping that those areas are the only ones with cancer and that the radiation will be at least as effective as it was on my pelvic mass in 2007.

There are other options to consider too: Taking the chemotherapy drug Xeloda during radiation to increase its effectiveness. Trying another chemotherapy drug like Vectibix (which is related to the drug Erbitux which brought me much suffering and little benefit). Or entering a clinical trial to try re-engineering my immune system to attack the CEA-laced cancer cells.

The rapid rise in CEA and the sudden worsening of pain is spurring me to move quickly. I was looking forward to summer travel, more time with family, and gainful employment; but those plans are postponed now. The next stage of treatment – six weeks of radiation – is scheduled to start in five days.

Wii Fit

Having been through major surgery before, I knew how hard recovery would be after my big abdominal procedure in December. It's amazing how quickly the muscles atrophy during a week or two in a hospital bed. And the body turns to burning muscle when your digestive system is out of commission for a while.

So I prepared this time by getting Wii Fit. It's a step board with sensors and a game disc that leads you on a variety of exercises. There's yoga, strength training, aerobics, and balance games. My favorites have been hula hoop, step dance aerobics, and ski slalom.

I've never been a regular exerciser, partly because I get bored with the purposeless repetition. Wii Fit helped motivate me by teaching me new exercises, rewarding me with unlocked features, and letting me track my weight and fitness over time.

There's also a social aspect. Before my surgery I tried out the games with my family. We each made our own avatar and competed at the games, setting records for time and quality. Then after surgery when I exercised alone the game put my family and friends in the scene to help motivate me. (That's a few of them with me in the picture above.)

I do think the game helped me recover faster, especially since it was the middle of winter and hard to get outside for long walks. The exercise was plenty to raise my heart rate and strain my muscles. It might also be effective for weight loss, though that was the opposite of my goal post-surgery.

Unfortunately I haven't stuck with Wii Fit like I probably should. Once I was well enough to get out of the house I preferred to go to work or do household chores rather than spend my limited energy on exercise. But now my energy has improved so that I'm trying to keep up with both regular activities and exercise.

Bearded man

I'm out of the hospital after my big surgery. It went well – the surgeon found only the two known tumors to be removed. The one in my rectum had grown to the size of a lemon and was very near complete obstruction, so I'm lucky that I didn't need a half-assed emergency surgery in the weeks leading up to the one we planned.

The rest of my abdomen looked clean, so they took out the tumors, applied heated chemotherapy, and sewed me back together. My rectum was lost to the tumor, so now I have a permanent colostomy. The tumor was also attached to my bladder but fortunately the surgeon was able to separate them and save my urinary tract.

I've been back home for a week, enjoying the peace and privacy that lack during any hospitalization. I skipped shaving in protest, as an energy-saving measure, and out of curiosity for how I'd look with two weeks' growth. My energy and appetite are slowly improving; my brain is still a bowl of mush.

Surgery

I had surgery to remove the tumor from my colon on August 17, 2004. The surgeon said it was likely that the remainder of my colon could be reattached and function normally, but there was a chance that instead I would have to wear a bag to replace the function of my rectum. Eww, I thought, but I felt confident that the surgery would go smoothly and I wouldn't have such a fate.

I was scheduled to go into the operating room in the morning, but due to delays with other patients I didn't get out of the waiting area until late afternoon. I was feeling pretty weak since I hadn't eaten solid foods in two days and had nothing at all since midnight. It was so late that after I was taken to the preparation area there were no more nurses or attendants around. Eventually my surgeon came looking for me and had me moved to the operating room. Things were not going smoothly.

The next thing I remember was waking with terrible pain in my abdomen. I heard my mom talking to the nurses and pressing them to give me more pain medication. Eventually they gave enough to take the edge off -- apparently many common pain killers don't work well on me and I need unusually high doses to get relief. The anesthesiologist had also managed to knock the crown off my front tooth while removing the breathing tube. Again, things were not going smoothly.

Once I was more comfortable my mom asked if she could go back to the hotel since she was very tired. It was around 10pm by now, but it seemed strange that she wouldn't stick around for a little while. I suspected that the news from the surgery was bad and she was having a hard time hiding her reaction from me.

I don't remember whether I got the news that night or in the morning. The surgeon removed the primary tumor but it had already ruptured the intestinal wall and spread dozens of quarter-sized tumors throughout my abdomen. He said tumors like that were beyond his power to remove. My only hopes were chemotherapy and a radical new surgery being tried at the National Institutes of Health.

He had also been unable to reattach the good part of my colon back to my rectum. So the end of my colon was now routed out near my belly button and emptying into a plastic bag. I was not ready to deal with that. The hospital sent an ostomy nurse to teach me how to care for the site but I couldn't watch. Fortunately my mom was there and learned enough to guide me after I was sent home.

My recovery was painful but rapid. Dealing with the ostomy was icky, tricky, and embarrassing. But two weeks later I was able to tour around DC and get drinks at the Sculpture Garden with my sister. Then I flew to Michigan for a couple more weeks of recovery before starting chemotherapy.