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.
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.