Anyone have experience dealing with chronic CDIF?

Thank you all for the input, and wishes.
My mom will be 86 next month. She is currently at a Rehab unit to get strength back from the long hospital stay. She seems stronger . I have talked to her about the transplant but really do not think she fully understands. She says"if I am asleep during the procedure, then it won't hurt". She does not realize the prep work. Additionally, I'm concerned about the alzheimer's , post procedure since I heard it gets worse. There is plenty to think about, and the CDIF, has taken a toll on her.

Hospitals are full of germs and "petri dishes" often - that is one term for them that my RN friend calls them. Just as a person enters a hospital to get well, they actually p/u c-diff and other things. Oftentimes their visitors have to be gowned so that the c-diff won't spread.

When my Mother needed a colonoscopy and couldn't do prep I was allowed to do enemas until "clear". Basically no bowel material left in bowel. Dr. said she was cleaner than anyone he had do the actual prep. Also if it is just for the fecal transplant she wouldn't need to be cleaned out. See if they will do with just enema prep.

Talk to the doctor about the possibility of doing the transplant without the bowel prep. The purpose of the thourough cleansing of the bowel before a colonoscoppy is so that the doctor can visualize the lining of the bowel. That can't be done if the view is obscured by fecal material. But for the fecal transplant, visualization is not part of the goal. Cleaning out the infected material is preferable, but if the patient has C Dif they probably don'thave much contents in the bowel. Perhaps giving them the transplant without prep, maybe effective . If the other option is doing nothing, why not try.

Yes they are very strong antibiotics. i'm a RN. How old is your mom? If she's weak and not doing well, she may be "giving up" I know myself, if I'm up in years in that state, I don't want anyone giving me a colonoscopy! Honor your mom's wishes if she's up in age and does not want this these procedures going on. How would you feel.? If she says "no", then it's "no" Period. God bless you, give you peace in your situation caring for mom.

Please do the fecal transplant. They are often immediately effective. I am a former nurse who saw many patients die not of their treatment but of the resulting C Diff. I am big on poop transplant. It is easy, it is quick and it is often effective when medications are not. VERY OFTEN. PLEASE do this. The fecal transplants can actually be done as do it yourself and many desperate people have done so with you tube guiding them through, a dedicated blender and enema tubing. Problem is that the donor cannot go through tests on this when it is not do "legally". And that is preferrable. The pills are best because they hit the small bowel better, and in enemas only the low bowel hit even with a high enema. C DIFF is a killer. Probiotics do nothing as the antibiotics she is taking kill them at ONCE. They do utterly nothing and are a waste of money. There has recently been a problem with one patient death likely not due to transplant stopping FDA approval of the pills. I have people who now are freezing their own poop before going to antibiotic therapy. As I said, I spent my entire career as a nurse, and have folders full of info on poop transplants from the beginning. Continue to search for a doctor who will do this, and travel if necessary. She has been through enough. I also suggest you reach out on Facebook to the author Joyce Maynard who writes about her husband's fight with C Diff during his cancer treatment. They got the transplant. He almost died of C Diff long before his cancer killed him. I don't know where they got it; they live in California, but I suspect she could guide you to an MD who could give you names in your area. WHEN will this become legal? People are dying every day because of something EASILY cured. I would do it myself in a second. Family members are thought to be the best donors. D Diff is not a nuisance. It is a killer and has killed more than you can imagine. It is not very catching to those of us with normal flora. C Diff as well as e coli is normal to our bowels. It is the antibiotics that throw it out of control, and you cannot cure it with probiotics.

I have taken care of C DIFF patients and it's the biggest nuisance.

It was gloves, gown, cap, and booties.

I think it's common knowledge that no patient should be on antibiotics more than

ten days, but I'm not a doctor and do now know the details of when or why

someone would want to veer away from this rule.

I don't know the ins and outs of fecal transplants but I don't understand why she should have to do the usual colonoscopy prep in order to have one - they aren't going in looking for evidence of cancer (which understandably needs a clear colon) they are leaving something behind. Your doctors sound less than helpful, perhaps you can get some help here:

https://www.openbiome.org/find-a-doctor

I turned to alternative medicines, starting with Colloidal Silver 500ppm and adding 3 drops to DH's first cup of *whatever* daily. Then I also stopped his stool softener until the runs stopped.

I prayed for guidance and did what I felt I was being told to try. DH lived to be almost 97 and had no dementia but a little "sun-downers" after a 2 month bout of pneumonia - finally cured with the Colloidal Silver since prescribed medications didn't help at all. I was also guided to start NOW Candida Support and it settled/fixed his "gut flora" and he stopped getting Thrush-mouth.

Your mother has a lot wrong with her - and no one medication is going to fix everything. She has to have been ill for a very long time. I too would call Hospice for assistance and they will at least help to make her more comfortable.

Have the tried Dificid? I had treatment resistant c-diff for 9 months and it nearly killed me. Finally my doctor put me a two month course of Dificid and that did the trick (flagyl and vancomycin did nothing). I would gladly have done a fecal transplant if needed. C-diff is no joke. Its been 14 months since it was irradicated and I'm still fighting to get muscle mass and strength back. I'm sorry your mom is suffering with this dreadful condition.

The longer a person is on antibiotics, the less effective they become. I think it's time to contact hospice. Your mother has no quality of life with so many illnesses. I know it's hard to let go but there comes a time when you have to realize the person is going through hell and there is no hope.

Hospice.

What’s her age? I agree with hospice!!

I’ve had stomach issues since childhood. When I took popular probiotics like Align, I got no results. When my doctor put me on a physicians brand, it made a big difference so the quality of the probiotics is very important. In addition to taking probiotics ( or foods like sauerkraut as another person mentioned), I recently learned that we have to feed our good gut bacteria and stop feeding our bad gut bacteria with refined, sugary foods. Good gut bacteria needs fiber and “prebiotic” foods. You can google. My doctor also gives me a supplement that contains L-glutamine which can help prevent infection and inflammation in the gut. I know this doesn’t answer your main question but maybe these things will help support your Mom’s recovery. Good luck! I hope your Mom is better soon!

Hospice

My mother had this treatment 5 years ago for C. diff. colitis. Think hard about how this would improve your mother's quality of life. It cleared up the C.diff for my mother but she was left so weakened by the infection and other issues that she was left bedridden as a result. She is still lucid but family members have hinted to me that I should not have arranged the treatment with my mother's consultant because of her quality of life.

My mother's treatment was one of the first and she did not have to "drink" anything. It was done via tube into the digestive system. The donor may or may not be a family member. A family member's microbiome (gut bacteria) may be too similar to that of the person getting the treatment for it to be seriously effective. If you are in the US an option to get frozen standardised samples might be an option.

Consider talking to her medical team about how she would benefit from the treatment and what she would want before putting her through it. The treatment has a high success rate and it may clear up your mother's infection but it sounds like she was suffering a lot before she even got the infection.

Thank you for the suggestions - I'm not sure whether to put her through the "prep" work of colonoscopy- it will horrible for her and she will probably refuse to drink all of the solution. Just at my wit's end on what to do ..

Fecal transplants are successful. From what I understand the donor is a family member. While it is gross, it is a treatment option.

C.diff will be hard to eradicate as your mother has compromised immune system as well as multiple comorbids that make her a susceptible host.

The only treatment I know of is the fecal transplant. And that may not work but may be worth a try. Colonoscopy prep will be difficult. There also are diet plans for c.diff you can look up on the Internet & use as guidance.

This is such a hard situation and I wish you the best of luck.

I am so sorry for her.

Can or will she eat sauerkraut, raw sauerkraut is a great probiotic, kombucha is a great probiotic drink. I would blast her system with as many probiotics as possible every single day. Google it, there are others.

The secret is to get them in her 2 hours either side of the antibiotics. Example, antibiotics are used 3 times a day say, 8am 4pm and 10pm, give the probiotic before 6am, after 10am, before 2pm, after 6pm and before 8pm. This gives enough time for the antibiotics to get out of her stomach so they can do their job and not kill all the good bacteria you are replacing with the probiotics.

I would give her 3 live, active culture probiotics and feed her at least 3 probiotic foods. A healthful serving is only a couple tablespoons (1/4 cup) or 4 oz of liquid.

I hope that you can get this under control quickly, it is brutal.