Update from me - C-Diff Colitis

CoolBreeze · 12-30-2011, 01:36 PM

It might be hubris to think anybody wants an update from me, but I do want to warn some people about a disease I had no knowledge of that has made me very ill.

Some will remember that I ended up with liver mets just a few months after finishing herceptin. I live near San Francisco and a major cancer center doing cutting edge treatments, and my oncologist referred me for a liver resection.

I was able to have this because I was very healthy, and because cancer was only in my liver and nowhere else. It is pretty unusual to be offered surgery when you are Stage IV so I felt lucky.

They removed the left lobe of my liver and successfully ablated a spot in my right lobe. That was October 3rd. I was in the hospital 6 days.

I went home to recover, planning to go back to work in December. I began to feel ill a couple weeks before Thanksgiving - vague stomach pains. I had my oncologist do a urine test, thinking I had a bladder infection. I took Azo for it, and just didn't feel well.

I had my family over for Thanksgiving but didn't feel well enough to cook so bought a turkey and ordered sides from Whole Foods. I'd had my first post-surgery chemo a week before and my whites were low so Thanksgiving evening I took a neupogen shot. I always have a bad reaction but this one was awful - I was in major pain. The next day, the back pain was gone but i couldn't get out of bed. I had stomach pain but was just super sick.

And, the day after that too, didn't move. Just slept in bed. That night, I took my temperature and had a fever, and also diarrhea started. I thought I was having neutropenic fever and called my onc - they said go to the ER. I really didn't want to as it was Saturday night and I didn't feel well enough to sit there with gunshot victims, but I went.

I was so sick, I couldn't do the forms, just lied down on the floor.

They got me in right away though, and it turns out I had an infection - I was septic! And, I had c-diff, which is a hospital-acquired infection that happens after you take antibiotics. (Which, you always do in the hospital) so I got it in SF.

I was in intensive care for 2 days and was told I would likely lose my colon - I was that bad off. Two surgeons came in to talk to me about it. Somehow, I responded to the medication they gave me: flagyl, vancomycin and one other antibiotic. (I did have a bladder infection.) My heart rate was 160 and my blood pressure was sky high. I had never-ending, and very foul-smelling diarrhea. It was water and they talked about tubing me it was so bad.

Sorry if that's TMI. But, in 24 hours the antibiotics started to help, and my heart rate went down to 120 and my blood pressure dropped - but not too low. On day three, the diahrrea wasn't constant but was down to 10 to 15 times a day.

After two days, they put me on a ward and after about three days, they dropped me from surgical service, which meant I could keep my colon. Relief!!!!

It was the worst experience of my life, by far. All my cancer experiences put together were not as bad as that.

Well, I didn't lose my colon. But, I have been sick ever since. I spent 8 days in the hospital and then they let me go but I was not functioning for a couple weeks. My husband had to stay home. But, gradually I am getting better.

I just had a CT and it shows resolving pseudomembraneous colitis and the good news, considering I've only had one chemo in three months - I'm still NED. No cancer anywhere!

I still have a lot of pain in my stomach and still can't eat much. I was 105 pounds before TG and am now 90 pounds. But, I am on the road to recovery.

C-diff comes back so I am doing everything preventative that I can (probiotics mostly) and am watching myself carefully. This illness might mean I lose my job as I've had to take an extra two months off and my protection runs out. (I hope not.)

C-diff can only be killed by hand-washing, not alcohol. It is rampant in hospitals these days - every doctor has told me it's an epidemic but they won't tell you that. If you are in a hospital, and you have had to take antibiotics, please make sure everybody washes their hands before touching you. Be assertive. And, don't take antibiotics if you can possibly help it when you are immuno-compromised.

My doctor (infectious disease specialist) said in 20 years of practice he had not seen a case as bad as mine that didn't end in death or colon removal or both. I'm really grateful I got this second chance and I want to make sure everybody knows about the risks of this horrible disease.

hestko76 · 12-30-2011, 03:08 PM

Oh my, I'm sorry to hear about your C-Dif infection. I, too, had it and I about died. This was three years before my cancer diagnosis. After my lumpectomy, the surgeon did not want to admit me to the hospital because of my previous bout with C-Dif. I'm glad you are doing ok. I remember my long journey to feel well again. You'll make it.... hang in there!

Helen

BonnieR · 12-30-2011, 05:22 PM

My heart was in my throat while reading that! What an ordeal. And a real cautionary tale. Thank you for sharing it. You must be looking forward to the new year and new beginnings. God bless. Keep the faith.

karen z · 12-30-2011, 06:18 PM

My reaction was identical to Bonnie's. Can't believe you have had to go through so much, on top of other issues. Here is hoping that 2012 is good for you and all other members on the site.
Best wishes,
Karen

chemteach · 12-30-2011, 07:43 PM

Glad you posted an update, but especially glad you're getting better. I was worried after reading your blog. So, no more feeling sorry for myself about the little side effects from Herceptin. I can carry tissue anywhere, and that Bag Balm clears the cracks in my fingers very nicely. My thoughts are with you. You are the optimist, the positive outlook example for us. Your writings on your blog are wonderful. Have a brilliant new year. Janet

caya · 12-30-2011, 08:24 PM

Ann, I am so sorry for this horrible ordeal you had to endure.
I am sitting here just shaking my head - please take it easy and rest.

all the best
caya

StephN · 12-30-2011, 10:49 PM

This is more than an ordeal - it must have been torture to endure so much pain. So glad to hear that things are moving in the right direction for you!

I heard that BLEACH is the best thing against c. diff.

The nurses told me that when my dad was in the hospital for an extended stay.

So, please use bleach to clean wherever you can so that no stray microbes of this sort can linger around.

JennyB · 12-30-2011, 11:15 PM

I cannot believe you have had to endure so much. I hope this is firmly in the history blog for you!
Happy New Year
Jenny xx

Delaney · 12-31-2011, 02:14 AM

Wow, well done on coming thru all that, you are one strong lady! I was tested for cdiff during my last hospital stay, cant believe now how unworried I was about it. Wishing you all the best.

michka · 12-31-2011, 03:16 AM

Dear CoolBreeze, what a horrible experience! I am so happy you were able to pull through but I can imagine the suffering. Wow, a liver resection and after that.You are a strong Lady.
I knew you could get infections in the hospital but I didn't know it could be linked to antibiotics. I had no antibiotics after my liver resection. In fact in France they don't give you antibiotics each time. They watch you closely. They are trying to cut down on the use of antibiotics to keep them active. I don't know if this is a good strategy.
I hope you will feel better fast now and that you will not loose your job. I lost my job so I know how important it is. I wish that you will leave all these problems behind you in 2012! Hugs. Michka.

Paula O · 12-31-2011, 05:18 AM

Dear CoolBreeze,

My heart goes out to you. ((Hugs))). I am so glad that you are doing better. What a nightmare.

Years ago my husband had a terible time with Recurrant C Diff (not as bad as you though) and I genuinely thought that I was going to be a widow.

I just looked up a reference to a JAMA article re: pulse dosing Vancomycin in case you are interested in looking into it.
http://healthywithin.blogspot.com/20...nt-c-diff.html

There was a newsgroup made up of people with horrible cases of C Diff that we found which was a wealth of information to us. I just poked around for it but didn't see it. I will ask my husband if he can remember and if he can, I'll get back with you as it may be helpful to you too.

Are you doing copious amounts of probiotics to repopulate your intestinal tract with healthy bacteria?

Cheering you onward, CoolBreeze and just prayed for you,

Paula

sarah · 12-31-2011, 08:46 AM

Wow cool as if you didn't have enough to deal with already.
Good to know about and it seems quite a few people have had it as well.
Paula, liked the joke.
I've sent the joke and the info about this infection to my support group here.
Happy new year
health and happiness
sarah

Joanna J · 12-31-2011, 10:01 AM

Oh how horrible what you have gone through,I am praying that you get back to feeling Better,Bless You.Thank You for sharing your story,(we never know what is lurking out there) I am hoping for ALL of our Her2 sisters (A BLESSED NEW YEAR) take care, Joanna J.

BonnieR · 12-31-2011, 10:48 AM

I am not sure I understand the connection to anitbiotics. Do they further compromise the immune system?

Paula O · 12-31-2011, 12:21 PM

Bonnie, here is some basic info re: C Diff:
http://www.cdiffsupport.com/aboutcdiff.html

CoolBreeze, here is the site that was helpful to us with a discussion group, case histories, etc.
http://www.cdiffsupport.com/

Wishing you the very best,
Paula

Ellie F · 12-31-2011, 04:04 PM

Thanks Coolbreeze
Am in hospital at present with a line infection on massive doses of antibiotics so very glad for the info!
Been told most probably got the line infection from having herceptin at the hospital in the first place.

I will watch especially carefully now!
Ellie

chrisy · 12-31-2011, 04:14 PM

Wow. What a horrible experience, and thank you so much for sharing it. Knowledge is power, and you've just given "power" that may Spare someone else from this.

You are so strong and a big inspiration to me and so many others. So relieved to bear you are back on the road to recovery.

CoolBreeze · 12-31-2011, 04:54 PM

Funny joke!

The connection to antibiotics has to do with your gastrointestinal tract. When you take antibiotics, it wipes out the natural "flora" in your intestines. Most people recover from this just fine, don't even notice it. But, for those of us who are immuno-compromosed, and have been exposed to a c-diff spore (typically after a hospitalization), it causes a huge problem. The c-diff infection multiplies in your intestines and puts out two kinds of toxins which can actually destroy your colon. Which, is what almost happened to me. Vancomycin can get the c-diff infection under control, but the spores can live on hard surfaces for months, which is why people relapse. (It is also pretty hard to kill inside the intestines).

Alcohol wipes don't kill it, you have to use bleach and wash your hands. I had my husband wipe my bathrooms down with bleach from head to toe when I got home and I need to do it again but still am not feeling well. He cut his finger so don't want him to.

The way you can repopulate the intestinal flora is to take probiotics. My doctor suggested it - said the science was soft but there was some. I take Florastor and Culturelle. I also eat yogurt daily (love Fage) and I try to drink kefir but don't care for it much.

Another way for curing relapsing c-diff is a fecal transplant. I would have thought that the grossest thing in the world (feces from one person goes into you) until I got this. Now I know c-diff is the worst thing and you'll do ANYTHING to get rid of it.

Because it's an epidemic it's important that people wash their hands when they come see you in the hopital, since most of us probably have underlying problems. Don't worry about upsetting them - I was in isolation and one person came in ungowned and ungloved - rather than getting upset when I reminded him, he was thankful. I told him I didn't want anybody else to get it and he agreed! Hospital personal get so busy they sometimes forget - we can do our part in helping prevent it by reminding them to wash their hands and not just use the alcohol gel. Anybody with cancer needs to get into that habit.

As for France, I think they are ahead of the game. The reason this is a problem is it has become resistant to other antibiotics, and there are strains that are becoming resistant to the only two that will treat them - flagyl and vancomycin. It's called a "superbug" for that reason. So, it's scary. People have overused antibiotics for years and it's good when they don't anymore.

Every surgery I've had, even a small one like putting in a port, or a biopsy on the liver, they gave me antibiotics as a preventative. I think they need to rethink that and give it as necessary, just "just cuz."

Anyway, now I will be unable to take antibiotics ever again, so I hope I don't have a bladder infection, as I suspect. (Although my cdiff started out feeling like a bladder infection so I kind of hope I do!)

Another thing: don't get a serious illness around the holidays. It's like Canada or the UK here now - everybody is on vacation and they all take them at the same time! I remember when doctors only took Christmas Day off and shared practices, now it's a week before and a week after and nobody else seems to want to take on another doctors patient. It's either ER or wait nowadays.

I'd still be waiting for an appointment if I didn't have a friend who was a doctor who got me in.

Anyway, c-diff is nothing to take lightly and everybody should know about it. Some people have mild cases; most don't have it like me. But, if you take antibiotics and then get diarrhea, you should suspect it and ask for a test. It can kill you if you wait.

*hugs*

ElaineM · 12-31-2011, 07:30 PM

Oh wow !! What an experience !!!!!!!!!! I am very glad you are on the mend and feeling a little better. Hopefully you will recover completely.
I never heard of this problem, so thank you for telling us about it.
Peace and good health to you in 2012.

sarah · 01-01-2012, 01:40 AM

Well Cool hope you continue to lick this problem and your cancer.
Thanks for all the info on this disease. As a member of a Cancer Support Group, we often visit people in hospital and I must say I thought "washing" the liquid antiseptic hung on patient's entrance was enough to keep our hands germfree. I am however a great believer in hand washing and not using anti-biotics thanks to having a father who was a doctor. In France, they used to over prescribed anti-biotics and I was always refusing them explaining my father had drilled into me they were only to use as a last resort or sometime you'd really need them and they wouldn't work. France happily has come to realize this and doesn't do it anymore. The hospitals here are super clean and they are fanatical about wearing masks and gloves when injecting you and gloves for most things but of course hospitals are full of germs and if workers aren't made to realize the importance of sterilization, it's hopeless - cleaners, everyone has to know that.
Paula, where do you find those jokes!!! I want to send them to my oncologist friend in LA, he needs some jokes!
health and happiness
have a great new year
get well, stay well
love sarah