What is it like to have Clostridium Difficile?
I live in New Zealand. Unfortunately my country is not immune from superbugs either as I found out. I actually caught and survived CD and it has been one of the worst experiences in my life. Perhaps my worst disaster and it could happen to you!
When I was diagnosed with CD I had no idea what on earth it was. I learned eventually that CD is gangrene of the stomach and the bug eats you alive from the inside out like canker in an apple. Being eaten alive is no fun. LIt feels like thousands of ants munching away.
In 2003 I was admitted to The North Shore Hospital with suspected giardia, a parasite caught from either the water supply or my cat but that is another story.
A barrage of tests followed, mostly for bowel cancer which I knew I did not have as I knew I had an infection and for ten days I was in isolation. I was dangerously ill with constant diarrhea, vomiting and weight loss. I went from 10 stone to 8 and a half in three weeks.
I was packed full of anti biotics of different kinds, pre meds with benzodiazepin, another horror story and a sleeping pill. After a colonoscopy the preparation for which on a raw and bleeding stomach was indescribable To this day I do not know how I forced myself to do it. Torture was not the word. I was sent home and told I now had Irritable Bowel syndrome (IBS) and it would clear up.
It didn't. I got worse. My GP and private surgeon tried more antibiotics for helicobactor which was extremely unpleasant but I lost more weight and my stomach was even worse. Diagnosis was not improved because my husband had just died of a rare blood disease and consequently both my medics decided I was suffering from depression and grief. My own GP, when I asked for a stool test refused and prescribed Lorazepam to "help me eat" omitting to tell me it was a minor tranquilizer to which I am allergic.
The pain in my stomach was now indescribable. It was just like something eating you alive from the inside out. I could hardly walk, eat or drink but I looked just fine. Losing the weight made me look fit and healthy but I knew I was dying. I took myself back to The North Shore Hospital A&E.
Convincing the doctor I was ill took 17 hours, a dietician and a clinical psychologist. The doctor wanted to send me home. I live alone. A kind dietician bought me some Complan and a straw and told me to sip it otherwise I should be force fed. To her I owe my life. If I had not known her through my husband I should be dead.
This time although I had major diarrhea and vomiting I was not isolated but put in a general ward and left to it. I think the staff felt I was malingering and wanted attention as my husband had died and they decided to make my stay so unpleasant I should never ever come back! I just knew I was dying as the cramps and diarrhea got worse and worse. I lost even more weight. I had to insist on being weighed. I was given a lamb curry to eat! I was given Imodium which with CD can make matters and recovery far worse! Not one of the staff recognised that I was in Benzodiazepine Withdrawal, not even the psychiatrist who I was made to see.
Four days later with no sleep as my room had two pneumonia patients on ventilators I decided to go home. I was not allowed to go to a nursing home, this was forbidden and I should have to look after myself but I felt at least I could die with a bit of dignity. Another friend moved heaven and earth to get me an admission.
The young houseman told me seriously "that to get better I had to go home" so papers signed bags packed and just as I was about to leave when the young doctor said they had found out what was wrong with me. I had Clostridium Difficile. CD. He said he was embarrassed at my treatment.
I had never heard of Clostridium Difficile. Five years ago no one had. He made it sound like a minor infection which could be cured with a drug called Vancomycin. He gave me a prescription and sent me on my way to the local nursing home without a word about it being a vicious infectious bug.
I started to wonder about CD when the hospital dispensary told me that there was not enough Vancomycin in Auckland to treat me and they would have to contact hospitals in Wellington and Christchurch to make up the number of pills. I had no idea that Vancomycin is the drug of last resort and that at any moment CD could eat through my stomach wall and kill me! At the time Vancomycin was in short supply as George Bush was being targeted by the drug companies to enforce copyright. The drug companies stopped making it for a year. I even begged a friend in USA to send me some to save my life. Something to which I should not normally stoop but fear of one's life makes us act in unusual ways. She could not send it but luckily some was found otherwise I should be dead.
I was very ill but I slowly recovered. Vancomycin is not a nice drug and reacts with the other drugs in my system so my nervous system was badly compromised but I still did not realize what CD was.
Only five months later I found out. CD is the polite official name for the family of bugs commonly known as gangrene! CD sounds better than a gangrene of the stomach. Gangrene sound really bad, a killer in fact which it is. CD kills and it kills in a particularly nasty way. No one wants to be eaten alive.
I was an obvious target for this bug. I am over 50, I had been in hospital, I had been given lots of antibiotics, I have an impaired immune system an yet at that time not one of my doctors thought about this infection. They thought I was making it up because they could not see what was happening to my innards. At the time nobody cared. I tried to warn the authorities but to no avail. I was again "making a fuss" about nothing!
On my second visit to hospital I was a walking infectious bomb. I must have infected everything I touched. The public waiting room, the public toilets, my room mates, I wonder if my ward was sterilized and cleaned? I hope so. The nursing home had never heard of CD either otherwise I should not have been allowed in to infect all the inmates. Fortunately I went home the next day
It is very infectious. Bleach and soap and water seems the only safe way to get rid of the bug on surfaces and hands.
I am now terrified of hospitals. It has taken five years to almost recover, the first three were hell.
Nobody should go through this so be warned!
© janette heffernan mmviii