Jamie, you know, the only thing I can think to try is a fecal transplant. The FDA relaxed their regulation of this procedure somewhat last year, and it is being used to treat C-diff (with a very good success rate) - especially when Vanco and Flagly are ineffective.

https://www.sgna.org/Issues/SG...on-Fecal-Transplants

that's a long and rough road you've had there. cDiff certainly doesn't add to it.  and yes ironically while for other serious infections, IV antibiotics are the norm, for cDiff you want to ingest your abx, so they topically treat the infection.

FMT aka Fecal Microbiata Transplant is indeed probably a wise choice at this point. what sucks is statistically Flagyl is shown to be less effective than Vancomycin but as it is less expensive the normal insurance game is to demand its use and failure first before anything else is tried.

Try the liquid Vanco, the problem is they also like to hold FMT for recurring cases of cDiff and if this is your first they will try to treat it conventionally.

will it damage your jpouch? well yeah if left alone, but that's why youre treating it. hope you get to feeling better soon.

I am so sorry Jamie,

Nothing I can add to the others good info except I hope that this resolves soon and that things calm down.

The fecal transplant is a somewhat easy option and can be very effective...you may need to push them towards it since many hospitals and doctors do not even consider it.

Good luck

Sharon

Thank you all for the replys. I'm feeling better today. I wasn't doing well at all the past few days. I been so dehydrated my veins kept blowing. They wanted me to have a pic line in and they tried that three times and couldn't even get that going. They were going to have an anastegologist put an iv in my foot or neck but they really didn't want to do that. Luckily I got a very good guy from the iv team that has gotten me before and he used the ultrasound to get a good one up higher on my arm above my elbo. So far it's been holding up. I been getting the liquid vacomyacin but the smell and taste of it has been making me sick yesterday I threw it up. They want me to keep taking it and it just turns my stomach now.  I was taking the liquid at home and here They are giving it to me in a large syringe. They were giving me flagyl through iv to But stopped it because they thought it was making me throw up more. I was throwing up everything even sips of water. I haven't taken any antibiotic since yesterday evening as there was a miscommunication between my doctors. But they increased my diet and I was able to keep a little food down. Which I haven't been able to in days. I'm just afraid once the vancomycin starts up again I'm going to be sick. Im so tired of throwing up. I am getting nausea meds now around the clock. I do feel a little bit stronger. I think its because I have gotten more fluids in me through the iv. I have had a few nurses coming in looking for a colostomy bag and then I have to explain everything to them. This one nurse didn't even know how they made the jpouch. She called it a fake colon to the other nurse. Very frusterating when your not feeling well and have to explain stuff. Its really kind of scary that some know nothing about it. I have read about the fecal transplant I'm not sure if they do that here. I live in Duluth,Mn. I had to travel to have my pouch done when I was a child. They don't seem to know alot about them up here I'm only 1 of three that have a j pouch.  By now you would think nurses would know at least what they are but I guess some don't. I just would like this to start going away so I could go home. Thanks again for the responses I appreciate it.

Jamie

from your description it might well be the Vanco, but I would gamble my money on the Flagyl making you vomit. as that leaves your system hopefully you'll be able to tolerate the Vanco.

I have explained my jpouch to countless medical professionals including doctors. we are a rare and special breed! but extinct we shall not be! lol.

These antibiotics are very hard on me. They been giving me very high doses of it. I'm still getting the bags through iv of flaygl and some vacomyacin by mouth. Earlier today I took the liquid vanco and I ended up throwing it up. So I'm getting nausea meds alot. I was able to keep a little bit more food down tonight though. My stomach had a little more cramping after I ate so I got extra pain meds for the break through pain. Its under control now and I am feeling a bit stronger now. They said when I do go home im still going to have to take antibiotics for awhile. My immune system is just to poor. Yes I have explained what my jpouch is to doctors also. Good way to put it a rare and special breed but not extinct. ��     Jamie

3 weeks after my 1st surgery of 3, I ended up back in the hospital with an abscess near my spleen. SO painful and difficult to resolve. I was there for 10 days with it. When they put a drain in, they also cultured the abscess to see what was growing there and it turned out to be a fairly common bacteria, and a fungus too (gross to think about).

Anyway, I was visited by the Infectious Disease docs and since I can't take Augmentin they put me on IV Vanco in addition to the drain. I could do 1-2 infusions of Vanco before it would blow my vein. The nurses were actually impressed I could usually last for 2 infusions. It is notoriously hard on your body.

While there for those 10 days, they put in a central line which helped them administer the Vanco, and also allowed me to go home with a different antibiotic that was in pressurized container that self-infused after I connected it to the central line and opened the valve on the container. All that to say, there are some options for dealing with these antibiotics at home. Also - Infectious Disease docs were awesome and were really the only sanity I had during those 10 days and the month or two at home that followed.

Steve

I'm so sorry for all your issues.  Speaking directly about c-dif.  Been there due to taking antibiotic Cypro for pouchitis.  Ended up in hospital and nearly died.  You will need to reign in the c-dif with antibiotics.  The one administered was Flagyl.  Yes it makes me really sick but after the treatment please try taking the probiotic saccharomyces boulardii. There is medical evidence that it fights c-dif.  We all carry c-dif in our system. It can run out of control and become deadly if intestinal lining/bacteria are out of alignment.  Since my incident 2012 I have not had c-dif reoccur.  I take saccharomyces boulardii daily.  Best of luck to you.

Thanks for sharing all your stories I appreciate it. I got to go home yesterday afternoon. They gave me several bags of flaygl while I was in the hospital. And high doses of liquid vancomycin. I'm on antibiotics for another ten days liquid vancomycin. I'm eating small amounts and drinking. Feeling a little stronger. The smell has gone away. But I'm very sore including into my back. I hope I never get this again. I'm tired out from it. But I'm glad to be home.  I'm so sorry that you all had to experience this also it is terrible! I will most definently be taking more probiotics for sure.     Jamie

Hi guys,

Well my c diff is back after being fully off iv flaygl and vancomycin. I took vancomaycin a week and half when I came home from the hospital and prior to being put in the hospital and I just tested positive again 2 days ago. It doesn't seem to want to go away. I feel awful. Has anyone had a stool transplant? I'm just scared for my pouch as I've had major problems with it and they won't give me a colostomy bag. My pouch is 18 years old. Also does c diff spread throughout the entire gi track? My gi doctor is off for 2 weeks they gave me vancomycin again and are trying to consult with a infectious disease doctor but they want my gi doctor to consult with them as they said I'm a rare case with all my other problems. I want a stool Transplant this is way out of control. Does anyone know if there's already donor stool that's been screened that can be used? I know if I chose a donor my donor would have to pay for it. Any advice would be helpful. Thank you so much!   Jamie

I don't know about fecal transplant in your area, but there is another antibiotic to try, fidaxomicin (Dificid), that is effective against C. diff. It's only been around for about 5 years. It's worth checking into, if only as an option while you are figuring out the fecal transplant treatment.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3926343/

Jan

Hi...Sorry you are going through rough time...You mentioned Mayo...they are usually really good with GI  and JPouch  issues. If they can't help, there is an excellent GI / Colo/Pouch surgery group at the University of Minnesota , Minneapolis...also, farther away, University of Wisconsin Madison has experience with IBD and J Pouch.  

You had mentioned FMT..here is a list..not sure how current or accurate, that shows clinics/med centers that use that treatment at time..some clinics/doctors on the list are in Minnesota..Duluth, Rochester, etc..

http://thepowerofpoop.com/epat...et-fecal-transplant/

Hope you get the right doc/medical/surgical treatment and start to feel better...hang in...  R. 

Hi , I just found out it costs 1,000.00 here in my town that my donor would have to pay out of pocket. As insurance don't cover the donor. I'm on disability.  There's no way I can pay for it. But, my gi doctor isn't back until the end of the month. I'm hoping my extra vancomycin and probiotics will help with this. I will also ask about the dificid. Thanks so much for the advice.    Jamie

Personally I think Dificid is just another med. I do NOT know the details of its comparisons to Vanco and Flagyl when it was trialed. But that aside I would indeed explore FMT, it has something around a 90% success rate in vanquishing cDiff. There is a company that has pre donated stools. Just heard about it at a CCFA symposium over the weekend. not sure of the details so not much help.

for recurrent cDiff, FMT seems to be the best answer.

Thanks for the info. I'm going to discuss this with my gi doctor when he comes back from vacation I also will be seeing a infectious disease doctor. I'm still on the vancomycin doesn't seem to be doing much I still have another few days of it though I'm taking floristor also and extra probiotics. I called down to the mayo and spoke with a nurse of the doctor I've seen down there and they told me they have donor stool. But of course I would needs consultations first. Its a 5 hour drive. My gi doctor here is very good and up to date on everything that could be used he does chrohns and colitis meetings even. He's known me as a little girl. I'm going to talk to him and see what we can do if this still isn't gone by the time he comes back. He may very well know about the company with donated stools. Its very awful and hard to get rid off. ��  thanks!   Jamie