Update from me - C-Diff Colitis - Page 2

Pray · 01-01-2012, 03:50 AM

Ann, Thank you so much for posting! I'm very happy you are doing better. All of your info. is so important to the rest of us. There is always so much I can learn on this site. Thanks again for posting.Your Friend,Nancy

Paula O · 01-01-2012, 08:02 AM

It's interesting--my husband was not in the hospital and he was not immunocompromised when he got recurrent C Diff. He picked it up somewhere before then (maybe a public restroom or the walk in clinic where he saw a dr--who kows?)and C Diff took over when his normal intestinal flora was out of wack. C Diff manifested and took over when he went on antibiotics and the good bacteria was wiped out. Course after course of Flagyl and then vancomycin did not touch it a long time. Many doctors are not familar with recurrent c. diff and tough cases. I think it's very important to be on good quality probiotics (acidophylis, bifidus, FOS which feeds good bacteria etc) when on antibiotics (in BETWEEN does) and after done with antibiotics for awhile (the refrigerated kind form Health Food Store or the high quality non refrigerated kind like Culturelle). Youurt with active cultures also has it but less than what are in concentrated pills.

Sarah, I find all my cartoons and jokes on the internet by doing searches for them (a lot are medically related) and friends also now pass along humourous things they think I'll enjoy. I'm trying to seek out funny things every day ( God's Rx in the Bible: "a merry heart does good like medicine"). You'll find my favorites in my blog (check archives--sprinkled throughout) if you want to pull some out and copy for your oncologist or anybody else wants to use them, you're welcome. http://jpoliver.com/wordpress/

This is one of my favorite funny things that I got from someone right here in the forum (I forget who--thx whoever it was!) and just adapted a bit then personalized for me because I love the attitude it reflects:
http://jpoliver.com/wordpress/archives/425

Paula

KDR · 01-01-2012, 08:48 AM

CoolBreeze,
So glad to hear that you are on the mend after a visit to nothing short of Hell. Your surgery was enough, but to have to deal with this major health concern is outrageous. Hospitals can be scary places, for sure. Onward and upward,
Happy New Year
Karen

KsGal · 01-02-2012, 12:09 AM

I am so sorry you had to go through all this. You are so strong! Thank the lord you are doing better and feeling better. I learn so much from your posts, being so new to this. Big hugs to you.

Becky · 01-02-2012, 11:55 AM

http://www.medpagetoday.com/Infectio...nControl/30449

Dear Cool

The above article was posted today on medpagetoday and I thought of you and posted the link.

I am glad you are recovering.

BonnieR · 01-02-2012, 12:02 PM

Thank you so much for taking the time to explain all of that CB. But I am so sorry that you had the learning experience.
Keep the faith.

CoolBreeze · 01-02-2012, 12:50 PM

Interesting article. I was given both the antibiotics mentioned - the guy said that was cutting edge for somebody as sick as me.

Vancomycin is VERY expensive. I had three courses and it cost about $2500 a course. Fortunately, my insurance paid so it only cost me $15.00.

If I recur, they'll put me on Dificid, the new one mentioned in that article. That is even more expensive and it's possibly my insurance won't pay as it's brand new. (Was only approved in the past two months).

I'm so scared of c-diff that I'd pay out of pocket with a credit card.

The mortality rate, had they done the surgery, is as high as 80%. I know I would not have survived it, and one of the surgeons told me I was "every surgeons worst nightmare" and nobody wanted to do surgery on me, it would be a last resort to try to save my life. One guy seemed pretty eager though.

I'm a million dollar woman by now, I'm sure.

StephN · 01-02-2012, 05:53 PM

Ann - Hope the seven day prophecy does not come true and you are still on the mend.

Join the Million Dollar Club, a few of us here have been swelling the membership over the years! Another special club for those of us who fight on and on ...

All best wishes for regaining your health and not losing your job this year.

NEDenise · 01-03-2012, 12:46 AM

Ann,
What an ordeal! Yikes!!
I'm so glad things worked out "okay" for you.
And I really hope you can keep your job...I know you love it...and I'm sure you are a treasured asset to the school!
Keep your strength up!
Denise

tricia keegan · 01-03-2012, 01:33 PM

I'm late coming in here but like everyone else was shocked to read all you had been through, and hope you recover very soon..

Shobha · 01-03-2012, 05:14 PM

Sending wishes and prayers for your complete recovery! Can't believe how many threats are out there to get us! Thanks for sharing your ordeal and educating us.

-hugs,
shobha

KristinSchwick · 01-05-2012, 10:47 AM

Ann,
Thanks for the info- so sorry that you had to go through all this. Hopefully you can find comfort in spreading the word- as you have done, which will hopefully prevent others from ignoring symptoms or lazy hand washing.
Kristin

Lien · 01-05-2012, 02:46 PM

That was an awful, awful experience! I'm so glad you survived.

As I had a similar infection when I was travelling in South East Asia, all the memories came rushing back.

There are a few things you may not know, that could help you feel better. Sometimes after these awful infections, people develop allergies/food intolerances. If you keep feeling tired, shaky, headachy, bloated etc.it could be food sensitivity. Try eliminating some high risk foods and see if you feel better. It might be a good idea to ask a good nutritionist to help you sorting this out.

If your good gut bacteria are depleted, you may have developed a Candida infection. The bladder infection may be an indication of that. You may want to discuss taking an antifungal like diflucan for systemic candida. It worked well for me.

Your bladder infections may be helped with lots of unsweetened cranberry juice (no preservatives) and taking some vit C may keep the bladder acidic, which candida doesn't like. That worked for me as well.

I did a low carb diet for three months, because candida feeds on carbs. That brought a huge improvement for me.

If you don't like kefir, you may consider acidophilus milk. Some prefer that. I don't know whether that's available to you or not.

I'm not saying that you should do all these things, just suggesting you research them and ask your doctor about them. Maybe even get a second opinion. And I'll like you just as much if you think this is all BS and happily ignore me. I just didn't want you to run the risk of suffering these symptoms for years before finding a way to deal with them, so I mentioned my experience. If I stick to my diet I can live a normal life and feel quite healthy. If I cheat, even without being aware of it, I feel awful.

Hope all this is totally superfluous and that you heal without all this hassle and feel much better soon!

Jacqueline

CoolBreeze · 01-05-2012, 07:06 PM

I appreciate all suggestions, and thank you Jacqueline. My home health nurse warned me about Candida but I don't have any of the other symptoms. I think the bladder infection isn't an infection but is probably my swollen colon pressing on the bladder. It isn't normal bladder infection symptoms. Lots of pressure and some mild urgency, but no burning and I don't have to go all the time like when you get one.

I think I'm going to try to mix Kafir with fruit in a smoothie. It's time for me to incorporate fruit into my diet, or at least try. I did talk to a dietition when I left the hospital but it was mostly about all the things I couldn't eat - which was pretty much everything.

I'm adding things back now and I'll save dairy for last (except for yogurt, which I guess most professionals think doesn't cause the problems other dairies can)

My newest problem is a toothache. I thought I had burnt the roof of my mouth but it's been over a week and now I have an ache. Obviously, I can't take antibiotics. And, I have a strong fear of the dentist. I figured at Stage IV, the one thing I could give up was the dentist as I might not live long enough to worry about losing teeth. I didn't figure on a toothache since I take care of them. Two years ago I did have a complete cleaning before I started chemo.

Hopefully, some saltwater rinses and extra brushings and flossings will help.