As she lay dying, Jan Malcolm made her husband promise.
'Tommy, we've got to tell people,' she said. 'If I live through this, we need to warn everyone so that no one else has to suffer like this. If I die, you must warn everyone so they will be aware of what to do to avoid this.'
The last words T.F. 'Tom' Malcolm heard from his wife of 47 years were, 'You were right.'
Being right is not much consolation. But Tom Malcolm intends to keep his promise. He doesn't want to throw stones at the doctors or OSF Saint Francis Medical Center. He thinks they did a fine job.
'I'm doing this out of love. I'm not doing this out of hate,' he says. 'I'm not going to plan on suing them. I'm going to plan on educating them.'
The one-time Caterpillar Inc. researcher from Washington believes that if they knew more about the latest research on the rapidly mutating superbug that killed Jan, she would still be alive. He prays that by the end of his story you'll know more about Clostridium difficile - 'C. diff' - and a possible way to stop it.
'She didn't have to die,' Tom says.
A month ago today, Jan Malcolm seemed to be making a spectacular recovery from gastric bypass surgery. Her efforts to lose weight over the past couple of years hadn't gotten very far, so she'd opted for a procedure that would reduce the size of her stomach and slash the amount of food she could eat. At 240 pounds, extra weight had placed a lot of stress on her 67-year-old body, and she wanted it gone.
Jan had problems with colitis for the past several years. On Valentine's Day 2006, a section of her colon had to be removed. At Tom's insistence, she followed up after surgery by taking probiotic supplements called acidophilus to rebuild her system after antibiotics.
'To make a long story short, they kill a lot of the good bacteria and a lot of the bad bacteria,' he says. 'Only the super-bad survive, and there's nothing to fight them. … The good bacteria must be replaced.'
According to Tom, she healed beautifully from that surgery, and her doctor was impressed with the results. So when she went back for the gastric bypass a few weeks ago, Tom wanted her to take supplements again. This surgeon said supplements were not necessary, probably because there are strict limits on what you can eat after gastric bypass. (Neither doctor chose to comment about this story.) And Jan had promised to follow those restrictions as part of her preparation for the surgery.
At first, it seemed everything was fine. Although she had not yet had a bowel movement, Jan felt pretty good when she got home two days after surgery.
During follow-up care, she hopped on a treadmill to show how well she was doing. She was having black stools, but that seemed normal – until they didn't stop. Five days after surgery, she started to have trouble keeping anything down. By the next day, she had diarrhea and was vomiting. Tom says the illness was so violent that she was losing pieces of her colon and intestinal tract.
Seven days after surgery, Tom called an ambulance. Jan was too weak and dehydrated to get up, and his shoulders were torn up after helping her to the bathroom so many times during the night.
'ER and surgery intensive care worked very hard to save Janice, but she was too far gone when we got there to survive,' Tom says.
She died Nov. 10. Her death certificate lists cardiac arrest due to sepsis caused by C. difficile and colitis as the cause.
'I wish I had gotten her down and forced the acidophilus down her throat,' says Tom. 'She might still be alive today. She might be PO'd at me for doing it, but I could live with that because she would be alive and able to be PO'd.'
Rather than a funeral, the Malcolms tried to celebrate her life, and mourners were lined for blocks in the procession. They got messages from around the world, because Jan's hobby was genealogy, and she had helped people all over. But Tom did not forget his promise. Even her obituary mentioned C. difficile right up at the top. He used that network in reverse, e-mailing information to everyone he could and wore out his printer making handouts. He attended last week's meeting of a gastric bypass support group to tell the people most affected. And he called here.
'This is an insidious, terrible thing,' he says. 'I don't want anybody to go through this.'
About Clostridium difficile
Over the past few months, the fierce staph infection called MRSA has begun to make a lot of news.
But methicillin resistant Staphylococcus aureus is not the only drug-resistant bug found in hospitals. Clostridium difficile, or 'C. diff,' is less well-known but mutating fast.
'C. diff is a spore-form organism,' says Kelly Dowhower Karpa, a Ph.D. and assistant professor in the pharmacology department at Pennsylvania State University who has studied the problem.
She says it can lie dormant in the body until conditions are favorable, which is one of the reasons it can be so tricky. Antibiotics may not remove those spores. Once those conditions are favorable, they start to grow and produce toxins that result in diarrhea, nausea and pain. And they're getting trickier.
'The organism definitely has mutated, has changed,' Karpa says.
While C. diff used to produce two kinds of toxins, now some strains produce three. And some strains have adapted so that 16 to 23 times more of the original toxins are produced than in the old strain.
'You're finding the organism produces another toxin, and it's producing more of the toxins than before,' she says.
Like MRSA, C. diff is beginning to be seen in the outside community but is still primarily found in medical settings.
'C. diff is an issue in all hospitals,' says OSF Saint Francis Medical Center spokesman Chris Lofgren.
When it comes to prevention, many of the same guidelines apply to both bacteria, he says. Bottom line: Take precautions. From the beginning of a hospital stay, let people know you expect to be protected. Get a private room if at all possible. Insist on hand-washing, fresh gloves and sanitized medical instruments. Make sure any open wounds you might have are covered with bandages from a sterile, sealed package.
'You really need to be proactive, ask questions and watch,' Lofgren says, adding that can also be a role for family or friends. 'Go to the doctor's appointments with the patient. Listen. Learn. Ask questions. Be an advocate for the patient.'
That's what Tom Malcolm tried to do for his wife, Janice. After she died of C. diff on Nov. 10, he shifted to advocating for others to fulfill her last request. He'd agree with all the advice for prevention, with one major addition: probiotics. Antibiotics take out most of the good and bad bacteria in the intestinal system, leaving the very bad bacteria such as C. diff virtually unchecked. Probiotics such as acidopholus put the good bacteria back.
'It can't hurt you,' Malcolm says. 'It can only help you.'
His wife's surgeon did not think that was necessary and did not choose to comment on this story. Lofgren noted that patients should always check with their own physicians first. Karpa said she was not familiar with the case and did not want to create a controversy where none need exist - but would explain more about the growing possibilities of probiotics.
'I'm happy to raise awareness,' she says.
Her son had C. diff when he was 2 years old. After months of antibiotics and treatments and seclusion - she had to quit working, and the only place the family went together was the doctor's office – he became part of a Johns Hopkins study on probiotics.
'Within 10 days, he was back to normal,' she says.
Karpa has since written a book called 'Bacteria for Breakfast' that compiles a lot of the information in this newly emerging treatment.
'Probiotics have amazing health benefits,' she says. 'When you understand how the gut works, the intestines and the immune system are so interrelated.'
In the case of C. diff, the toxins produced by the good bacteria are a plus for the body because they attack that bad ones. Generally speaking, good bacteria also make the intestines more acidic, and C. diff doesn't grow under acidic conditions. And good bacteria can crowd out the bad, a situation she usually compares to Penn State football.
'If 200,000 people show up, the stadium only holds 100,000 people. There aren't going to be enough hot dogs for everyone,' she says. The same thing applies to bacteria in your intestinal tract. 'By default, some of the bad guys are going to get crowded out.'
If nothing else, it can't hurt to ask.
What is Clostridium difficile?
What is it? A bacterium that causes diarrhea and more serious intestinal conditions such as colitis. It can cause sepsis and death.
What are symptoms? Watery diarrhea (at least three bowel movements a day for two or more days), fever, loss of appetite, nausea, abdominal pain.
Who gets it? The elderly and people who have illnesses or conditions that require prolonged use of antibiotics.
How is it spread? Bacteria are found in the feces. You can become infected by touching contaminated items or surfaces, then touching your mouth or mucous membranes. Health-care workers can spread it through hand contact.
Where can I learn more? This information came from the Centers for Disease Control and Prevention at www.cdc.gov. You also can check www.mayoclinic.com or www.cdiffsupport.com.