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3rd C Diff infection

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Posted 8/31/2012 5:31 PM (GMT 0)
Hello everyone. It has been a while since I stopped by. My UC has been in remission for the last 5 years. I am wanting to see if any of you have delt with C diff? I was dx. a few month ago after a long stink in the hospital for migraines. Did a few weeks of Flygal, and still had D , was tested again and was positive, so I was put on Vanco for 8 weeks with a taper. After that I immediately tested pos. again and started dificid. I am finished now and still know I am positive, so I called my gi and because of the long weekend have been told I must go to the ER for stool studies and treatment. I will add that I have an immune deficiency that causes me to be unable to fight infection in any of my mucus membranes (gut), so I have been told I may be harder to treat, but this is beyond crazy now.

Has anyone had issues of recurring c diff or every had c diff that just didn't go away, and how did you beat it? I will add that I am also taking florstore. Thanks, I am at my wits end!
Posted 8/31/2012 5:42 PM (GMT 0)
Don't really have any advice for you but was wondering if maybe you never really had UC at all but merely colitis due to a C-Diff infection and that you have been in remission for 5 years because your previous case of C-Diff was cured.
Posted 8/31/2012 6:40 PM (GMT 0)
It's funny you mention this. My gi has been back and forth regarding my UC dx. I was dx in 2003 after the birth of my first child. All the normal symptoms, blood, mucus, urgency, ect. I was dx by colonoscopy. Put on all the meds that did NOT work till I started 6mp. Had numerous flares between 2003 and the birth of my second child in 2007. And had a nasty flare after that birth. But have been in what they call remission despite chronic bouts of D over the years but with a neg. colonoscopy. So the jury is still out. However, and this is TMI, the smell of these c diff issues are WAY different than any of my other d issues. It is very clear that something it up simply based on the smell.

I had also been admitted over the years with the chronic d and was never positive for c diff until 5'months ago. I am at my wits end, I just don't have much fight left in me anymore. I am a mom to two kids who have had to deal with their mom in and out of the hospital for months now. The guilt I carry for my poor husband who has been left to what would basically be a single dad just breaks my heart. I just don't know what to do anymore other than to just put one foot in front of the other......
Posted 8/31/2012 6:41 PM (GMT 0)
Have you considered fecal transplant?
Posted 8/31/2012 6:58 PM (GMT 0)
Shannon,

I can really emphasize with you. I have two yungons (girls) and it breaks my heart that my disease has put a definite damper on both me and my family. I am terrified of going out in public with my girls by myself because what do I do if I have to quick run to the bathroom at the mall or movies or wherever? If we are going to be out for any length of time at all I need to make sure someone else (like my wife) goes with us. Even though I use depends every once in a while that doesn't really totally solve the problem if I am alone with the kids and have an accident. I can't just walk around like that for hours without cleaning up.
Posted 9/5/2012 2:38 AM (GMT 0)
Hello again! Just updating my post. I spent the holiday weekend back in the hospital. Since it was a holiday weekend, I didn't get to see my set of docs, so I was left with the admitting hospitalist. Got the normal, iv fluids, which took a total of 9 sticks including one to a vein in my neck by the ER doctor. I have never in my life screamed so much, and I have delivered two children, had a total hysterectomy and complete reconstruction to my foot after being run over by a ride on lawnmower. So I know my fair share of pain.

Anyways, the ct came back normal despite my high level of belly pain, which I am glad for I guess. So, the hospitalist decided to add some sort of binding agent(don't remember the name) and sent me home on Sunday. Well here we are tues. and I am so constipated I can't see straight, which I know is a bad thing for c diff. So went to my gi and they were really pissed that i was put on this med, took me off it and called the hospital to complain about the treating doc.

So, they said because I seem to be antibiotic resistant, that I would be a good candidate for fecal transplant. My local hospital does not do it so they are looking into it more me. Does anyone happen to live in Miami who has had it done?

We also are looking into if I will even be a candidate since I have an immune deficiency where I do not produce any IGA which is what helps fight infection in the mucus membranes of the body . I am scared that using someone's fluids may open up a whole new set of problems for an immune deficient patient such as myself. Has anyone ever heard of immune compromised patients being accepted for FT?

I am so lost and lonely and find it hard to discuss this with anyone other than my husband. I am afraid of his family finding out about this consideration, not to mention my friends. Which of course you all know how we quickly find out who your true friends are when there is chronic illness. I have so many plans for my family, a Disney trip soon for my kids, a ski trip we try to take every year, and over the last 6 months, I have been the cause of a lot of my family missing out on these fun family things. I do not want my kids growing up thinking I am just this sickly, frail person who can't ever do anything fun with them. My 5 yr old daughter just asked me the other day why I go to the bathroomso much. It just breaks my heart.

Please if anyone has info for FT in Miami or anywhere in Florida, please let me know. Desperate in MIA.

Post Edited (shannon1) : 9/4/2012 8:54:37 PM (GMT-6)

Posted 9/5/2012 11:38 PM (GMT 0)
I'm not sure what you mean by "immune compromised patients" but most IBD suffereres are immune compromised and many who try FT find relief. It has 90% success rate with treating c diff after just one infusion. You might even find it helps with your UC too. Why would you worry about what people think if they found out about FT? If it brings you relief then who cares!
Posted 9/5/2012 11:57 PM (GMT 0)
My heart goes out to you and please remember I know it is such an isolating disease , to try and keep positive and have hope. An answer and /or remission could be right around the corner for u and your family.
Posted 9/6/2012 12:59 AM (GMT 0)
Thanks for all your replys! As for my immune deficiency, not only do I have UC, but a deficiency called Selective IgA Deficiency with Anti IgA Antibodies. I have NO iga in my mucus membranes which is what fights infection in your mucus membranes. My ID doc said it would make it much harder to treat my c diff, which is why I have yet to have a neg. test.

I have already spoken to a gi office in Boca Raton, not far from Miami and will be meeting with the doc who does FT to see if I am a candidate or not. His nurse said that they usually do consults over the phone, but that after she asked the doc, he said I had to come in to go over ALL my medical history.

I have searched the net and have found NO mention of immune deficient patients and fecal transplant.

Again, thank you all for taking the time to respond!
Posted 9/6/2012 1:32 AM (GMT 0)
Good luck Shannon1 and I hope you find relief soon.
Posted 9/6/2012 7:00 PM (GMT 0)
What a nightmare you have been going through. I developed c diff after a round of antibiotics depleted my immune system of good flora. It was excruciatingly painful. Pardon the graphic description but every time I had to defecate it felt like someone had put a blow torch in my anus and set it on high. Fortunately flagyl worked for me. I used to be quite casual with hand washing and fruit/vegetable washing. No longer.

If you are not allergic to probiotics, I would highly recommend you ask one of your doctors for a prescription. I feel they have definitely been beneficial for me.

You are not alone. Members on this site understand completely. Good luck.
Posted 9/6/2012 7:04 PM (GMT 0)
Shannon1 - Just FYI, at the top of the page there is a search box. I put in fecal transplant, hit the search button and got a whole bunch of entries from people who have used or are using it.

Good luck.
Posted 9/6/2012 9:22 PM (GMT 0)
Goodluck ! You'll get there !
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