Christina's Case History

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Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Postby Christina » Fri Dec 29, 2006 8:02 am

Yesterday marked the end of my 12 weeks off of Vanco. I have made it this time around!

Please read my entry in success stories titled "It's Over (for now)".
Last edited by Christina on Sat Apr 14, 2007 7:47 am, edited 1 time in total.

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Postby Christina » Thu Apr 05, 2007 9:34 am

This will be my final entry into my case history unless someday "The Beast" decides to rear it's ugly head again. It has been almost 6 months now since my final IVIG and I am doing pretty well despite still having cramps and diarrhea several times per month. In January (2007) I had a Colonscopy and Endoscopy and I now have very bad IBS. I've been told I will most likely have stomach/bowel issues probably forever and that is OK, too. It sure beats the whole C-diff nightmare. I am now on Desipramine,Protonix,Reglan(for nausea), and Bentyl. All of which I will remain on for a long time.

My quick summary:

C-diff 12+ X's in 17+ months(I lost count after this) -Flagyl(2 rounds),Vanco(1 year),Xifaxan(6 days),Stool Transfer(Duluth,MN-Dr.Aas), and finally IVIG's(X3).

Hopefully, I will not need to post in case histories ever again. I will be keeping my fingers crossed for the rest of my life.

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Postby Christina » Sat Dec 29, 2007 5:58 am

I felt I should update to say I am now off of all of the above meds except for maybe once a month needing a Bentyl.I am doing fine and living with occassional IBS.There is hope down the road.It may just take some time.:)

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Postby Christina » Wed Feb 18, 2009 10:45 pm

I took 7 days of Penicillin for strep back in December 2008 following a positive rapid test. I finished the antibiotic on Christmas Day. I am almost at my tenth week off of it and just tested positive (2/18/09) for C-diff once again. My mild symptoms started last week, so in my ninth week. Prior to that I was totally fine. I want to note that along with the antibiotic I took and am still taking 4 Florastor, 2 Culturelle, 1 DanActive, and 2 Florajen 3 faithfully everyday. Since for now, my symptoms are mild I am being treated with high doses of Pepto Bismol. If my symptoms go full blown I will be put immediatley on Vanco. I will only be allowed a few relapses this time, if that happens. If so my GI Dr. will go right to the IVIG's once again. I will update this once I have fully beaten this nasty beast for the second time. I hope it doesn't take as long as last time! :)

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Postby Christina » Wed Mar 18, 2009 7:16 am

After taking very high doses of Pepto (6-8) tablets per day for about a month, I am doing fine. I had a few scares and upped the Pepto and within hours things calmed down. Things are back to normal and since I did not need to go on Vanco, I will not have any recurrences this time around. I added in one package of VSL along with the above listed probiotics after I got my positive result. Over the next month I will be weaning off of the probiotics only staying on one thereafter, since over time they lose their efficiency. I think a quick diagnosis and quick non antibiotic treatment are key to not wind up with recurring C-diff like I did the first time. I did all of this with medical advice from my Dr. and never would have done so without his OK first.

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Re: Christina's Case History

Postby Christina » Tue Aug 17, 2010 3:04 pm

Tested positive today for C-diff after being sick for 3 1/2 weeks. I have not taken an antibiotic since December of 2008. I am on Vanco, 125 mg 4 times a day, for 10 days. My Dr. will call at the end of the week to discuss how I will go off of it at the end of the 10 days. I have decided C-diff has got to be out to kill me. There is no other logical explanation.

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Re: Christina's Case History

Postby Christina » Thu Mar 17, 2011 8:31 am

Things are really crazy here. I am 15 weeks of Vanco and having mild symtpoms that come and go. I broke my toe last week running to the phone to turn on the fax machine to get lab slips to get tested and I never turned in any samples yet because I am having some extensive testing done. Got some of the results yesterday and am confused to say the least. Part of my sample is now incubating for the next few days and the other test for C-diff DNA picked up signals indicating C-diff in very low amounts. Those were then sent to be analyzed further and came back as presumed C-diff. Now I am waiting on results of the incubating sample and then possibly the DNA test will be run again to confirm because C-diff could not be cultured in my sample and toxin came back negative, but the sample was 4 days old. Not sure if that might be why. Wanted to update. I am waiting for more results and some direction as to what to do about all of this. I think my prior assumption is correct that in some, C-diff never goes away. It just sits in there held back by the good bacteria to some degree, waiting to over take once again. I wonder if I will actually ever get rid of this thing or if I am doomed for a life time of C-diff agony. It has already been 6 years now.

Anyhow, on a good note, I am going to be going to speaking in front of the FDA next month about my C-diff case and why we need new treatments for this horrible, horrible illness. Wish me luck. :)

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Re: Christina's Case History

Postby Christina » Thu May 19, 2011 7:49 am

Just 4 days short of being off Vanco for 6 months I have relapsed and am back on Vanco. Waiting for test results as things became so severe I had to start treatment without them being back. No antibiotics, but severe stress. This is a carbon copy of what happened last summmer. Most likely headed for a stool transfer now hopefully, in June. Will update here as needed.

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Re: Christina's Case History

Postby Christina » Thu Jul 21, 2011 5:12 pm

Had a stool transfer via colonoscopy this past Monday, July 18, 2011. Not feeling too great. Will update as I know more.

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Re: Christina's Case History

Postby Christina » Wed Aug 22, 2012 10:26 pm

Just a quick update. 13 months post stool transfer. I'm ok. Many negative PCR's and lots of scares but no beast. Knock on wood that the good luck will continue!

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Re: Christina's Case History

Postby Christina » Mon Mar 25, 2013 7:49 am

Another update. I am still ok since my transfer in Indiana back in July of 2011. Knock on wood, this is the longest I have survived in between infections. I have had many scares, but continuously test negative and the symptoms go away within days. My educated guess low grade IBS now and then.

Christina
Long Time Contributor
Posts: 1718
Joined: Fri Sep 30, 2005 6:13 pm

Re: Christina's Case History

Postby Christina » Tue Dec 09, 2014 11:49 am

I am still here and still ok 3 years after the transfer. I am currently under testing for possibly another form of colitis now. Having a colonoscopy on January 5th. My Dr. in Boston is collaborating with the local Dr.'s here. It is a medical mish mash to say the least. I'll update this when I know more.


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