My ostomy

My big surgery in December was prompted by a tumor growing in my rectum and threatening to block the passage of stool. When the doctor removed the tumor he had to remove the rest of my rectum too. The rectum normally sits between the end of the colon and the anus, acting as a warehouse for poop.

With the rectum removed I was left with a short anal stump and the loose end of the colon was redirected to a hole in my abdominal wall (called a stoma). There the stool exits and is collected in a plastic bag taped to my belly. Without a rectum or anus to limit movement through the stoma, gas and stool exit whenever the colon becomes active. That can happen at any time of day or night but is most likely after starting to eat.


My ostomy bag is a two-piece Hollister New Image system. It has an adhesive flange which I tape to my belly and a hole in the center for the stoma to protrude through. On top of that flange I place a special opaque plastic bag to collect stool. It has a charcoal filter to let gasses vent without odor and a clipped opening to allow collected stool to be emptied into a toilet. I replace the bag every two days for freshness and change the flange about once a week to clean the skin underneath and restore adhesion.


My stoma is up to two inches long, depending on whether my colon is in a relaxed or contracted state. It sits upon a crowned region of my belly due to the rearrangement of intestines beneath. So the whole appliance, with the crown, stoma, bag, and contents included protrudes two or three inches compared to the other side of my belly.


I check on the bare stoma when I change a bag or remove the flange and clean the whole area. It's a soft, pink tube that weeps moisture and bleeds easily if touched. It does not have nerves to feel touch but does give a sensation of pressure as stool passes.

It's hard for me to accept having this new body part and associated medical appliance constantly on my body. I'm not eager to go shirtless in front of anybody – no more beaches, pools, or bare backed work in the sun. The lack of control, feeling, and muffling means that I can let out a big fart sound at any time without warning – quiet meeting rooms make me anxious. The appliance takes more time to dry or change after a shower, so it's impossible to jump in for a quick shower.

The protrusion of the stoma makes me uncomfortable trying to lay on my belly in bed. It's not that the stoma hurts from the weight, but I worry that it will be harmed or get stuck trying to pass something out. Likewise, sexual relations are more inhibited. First, I don't feel very sexy with this big bandage-looking thing on my belly. Second, the flap of the bag hangs down right into the area where business gets done. I haven't found a comfortable way to fasten it out of the way. And third, the stoma and any contents of the bag make it uncomfortable to lie belly to belly with another person.

The biggest discouragement to me now is that: the ostomy interferes with intimacy and affection. The second biggest annoyance is with clothing. Now, in the winter, I can cover up the appearance of the appliance with layers of heavy clothes. But still it sometimes looks like I have something hidden under my shirt or that I have a strikingly large beer belly in comparison to my otherwise thin frame. This problem is likely to get worse as the weather warms.

My strategy for now is to get more comfortable with my own body and worry less about how it appears. But I am a person who likes to dress sharp in public, so having half my wardrobe not function and appearing less fit than I am is embarrassing.

I don't want to complain too much. Having the ostomy saves me from the poor function I had before the surgery: unpredictable bowel movements up to twenty times a day, pain, and an impending blockage. I feel lucky that I haven't had to endure worse medical augmentation. And I look forward to taking advantage of the greater freedom for travel and activities.

Pain scale

Whenever I'm at a doctor's office or hospital, the nurses and doctors ask me to rate my pain on a scale of 0 to 10. Apparently pain is a common symptom among cancer patients. Over the years I have experienced different kinds and degrees of pain across the spectrum. And with that experience I have developed a guide to keep my assessment consistent from week to week.

Pain scale

0: No pain.

1 or 2: Noticeable pain. Not enough to be bothersome, but enough to be aware that some part of my body is unhappy.

3 or 4: Distracting pain. It draws attention away from normal tasks and causes discomfort. It is not unbearable, but I would prefer to treat it if possible.

5 or 6: Constant pain. I am continually aware of the pain and unable to concentrate on anything else without great effort.

7 or 8: Writhing pain. Pain that makes me moan, yelp, grimace, and contort.

9 or 10: Blinding pain. Unendurable pain, greater than what I could imagine under normal circumstances.


During most of my treatment the pain has fortunately been in the 0 to 2 range. I have had frequent excursions into the 3 or 4 range with problems such as proctitis or healing after surgeries. When the source of that pain is unknown it can be useful for finding a new problem, but if the source is known then I prefer to medicate to a level where I can function normally.

The tumor that broke my pelvis caused pain in the 5 to 6 range. The radiation to treat it caused rectal pain shooting as high as 8, which made me wonder whether the cure was worse than the disease. After a few months it improved into the range of 1 to 4 which I medicated when necessary.

I am not conscious of experiencing a 9 or 10, but I think I did in the hours and days following major surgeries. Strong drugs or trauma have erased those memories.

Sense of touch

I lost some feeling in my hands and feet due to the various chemotherapy drugs I've taken over the past five years. I also lost my fingerprints thanks to Xeloda, which irritates the palms and soles in a reaction called hand-foot syndrome.

When I went to Disney World in 2007 I found that the entry gates use fingerprint scanners to ensure that the person using an electronic ticket is the same one who registered it. The scanner choked when I tried to register and an attendant had to override it. I bet that enough of the population has similar issues that it's in their training manual. I suppose it also means that people like me are a headache for anyone else trying to use fingerprints for identification.

Some of the numbness is nerve damage, particularly from the platinum-based drugs. The nerves do slowly heal, so I am getting some feeling back. In fact, now that I've been off of systemic chemo for four months I have enough feeling to realize that I lost more than I appreciated. Except for a period after a massive dose in 2005, the numbness hasn't been enough to interfere with tasks like holding a pen or buttoning a shirt. It's just been a dullness of sensation.


Today I learned that there's another explanation. According to research published in Science, fingerprints enhance the sense of touch. The ridges vibrate as they encounter bumps on a surface and transmit stronger signals to the nerve endings. So part of my numbness to texture is not just the nerve damage but the lack of fingerprints. I wonder if they, too, will regrow over time.

Holiday missed

One of the downsides of my big surgery is that it had to be done in December. I delayed it a week or two so that I could enjoy Thanksgiving with my family and some early Christmas activities. For the past few years of cancer treatment I have tried to schedule a break for Christmas so that I could enjoy the festivities and time with family.


But I didn't think it would be wise to delay this surgery any longer. And from my surgeon's description the tumor in my rectum was on the verge of becoming life-threatening any day. So I sucked it up and focused on surviving the surgery, sacrificing what is regularly the happiest time of the year for family, friends, and me.

Now that my body is finding it's new normal, the holidays are over and the first full week of January marks a return to sober routines of work and non-festive cold weather. It's all a little more depressing without fresh memories of a fun Christmas break.

At least there is one more holiday to celebrate. Since I was little my family celebrated Epiphany, or Little Christmas, on January 6th with a nice meal and a small gift exchange. I will try to enjoy that again this year in the company of my girlfriend and companions.

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.

A big day

I'm coming up on one of those days that's common in the life of a cancer patient: a Big Day. On Monday I'll check into Mercy Hospital in Baltimore and on Tuesday Dr. Armando Sardi will attempt to remove my chemotherapy-resistant tumors and fry any stray cancer cells with a heated chemotherapy flush.

He told me to expect an average hospital stay of two weeks for this procedure and three months for full recovery. But I know from my big surgery in 2005 that complications could prolong that by at least a factor of three.

I don't know exactly what shape my body will be in after the surgery. I'll probably have a new colostomy. I might have a urinary ostomy. The previously irradiated section of pelvic bone will be removed if it's still harboring malignancy. The doctor might find that there's too much disease to treat when he opens me up and just leave it be. Or all could go wonderfully well and this could finally clear me of the cancer I've been wrestling with for more than four years.


How do you prepare for a day of such uncertainty? I spent extra time with family at Thanksgiving and celebrated some parts of Christmas early since I won't be able to travel to be with them. I have already finished wrapping presents for my girlfriend and my mother who will be in town with me. For my scientific consulting business I have made arrangements to work from home during recovery and put projects in motion to continue in my absence.

But it's hard to predict just what will happen beyond Monday. It's like driving on a strange road in thick fog. There are other times in life when we all experience such uncertainty: the first day of school, the first day of college, the first day at a new job or the first day in the military. Those are days like this where there's a known unknown, an experience which we'll look back at someday and appreciate what changed at that moment. Another big day.

The face of cancer – 2 years

Two years ago I began taking daily photographs of myself to track how my appearance changes as I battle with cancer. During that time I started a different chemotherapy, treated a bone tumor with radiation, knocked the cancer back into remission, finished chemotherapy, diagnosed a recurrence, started another chemotherapy, and found that these drugs that helped before are no longer stopping the cancer's growth.

I previously posted time-lapse movies of these self portraits at the 6 month and 9 month marks. Now I present two years of self portraits as a high resolution download or as a streaming video.



The early months were marred by the severe acne and hair loss from the previous ineffective chemotherapy. Since then I think my appearance has continued to improve even through the latest months of recurrence and unsuccessful return to other drugs.

The best plan of attack now is a big surgery to go after the tumors directly. So I am preparing myself through eating, exercise, relaxation, and planning for months of recovery. The break from chemotherapy at this time might show in the extra twinkle of energy and clarity I feel.