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Avatar universal

Seeking C. diff experiences/advice, if possible

My 65 year-old mother was ill for weeks with severe diarrhea and then lost her appetite altogether. She also has severe spinal stenosis that causes agonizing nerve pain all the time, and so we weren't entirely sure what was wrong with her for a while. She had seen her doctor last year for chronic diarrhea, and he told her it was due to irritable bowel syndrome.

In any case, we took her to an ER about a week and a half ago. She weighed in at 86 pounds. (She is 5'4".) They took blood and stool samples and said she had no infection and to call her doctor for a routine visit. My father said she can't eat and is rapidly losing weight and asked for her to be checked in, but the ER said no. My mom got a doctor's appointment almost a week later...she was down to 83 pounds, and her doctor admitted her to a different hospital.

She was admitted by way of the ER on Friday night. (Today is Tuesday.) By Saturday, she seemed better and actually had an appetite for the first time in *months,* but she continued to pass all food as soon as she took it. On Sunday, she became disoriented on and off and was confusing reality--she thought she was home, that the nurses were waiters who needed tips, and she imagined various people who as far as we know never were there. This was concerning. She was on vancomycin (oral), IV Flagyl and another IV medication, the last for a UTI. Yesterday, the hospitalist discontinued the UTI antibiotic, saying it could compromise her C. diff treatment. Her health appears to have declined on Sunday and remains poor; the hospital has now put her on morphine to manage her pain, which she did not need on Saturday. She's also now complaining of knee pain.

On Thursday, she will have a colonoscopy and a fecal transplant.

Does anyone have experience with severe C. diff? The hospital seemed to have thought that my mother might be ready to go home today, as recently as yesterday, when she was clearly not improving. Today is her third full day in the hospital. I'm a bit paranoid about this, as both of my grandparents died in the hospital she is in now, one of whom who did so after a feeding tube was accidentally put into his airway instead of his esophagus, and he died from pneumonia shortly thereafter. I don't want her in this hospital--for many reasons, but one of which is that one of her nurses on Saturday didn't wear the gloves and gowns we are all required to wear in my mom's room, and she came and went a couple of times without even washing her hands--but the better one refused to admit her when she went to the ER a couple of weeks ago.

Anyway, I am out of my mind with worry. She's 65 years old and shouldn't be struggling with an opportunistic infection like this.
4 Responses
1415174 tn?1453246703
COMMUNITY LEADER
Hi, and so sorry you are going through all this. How is you mom today? The fecal transplant is actually the best treatment. But did one of your family members give her the material for the transplant so they know it is safe (clean)? It should help soon. It usually works better than antibiotics when Vancomycin fails on C. difficile.  How is her appetite now? You have to try to keep her drinking water and maybe something like a protein drink like Orgain and some fluids that have potassium and other electrolytes (sodium, potassium, chloride, etc). Are they still giving her something for the nerve pain? They can give other things besides morphine. That usually works for a short time then makes it worse. Let me know how things are going.

mkh9
Avatar universal
Thanks so much for your reply. She had the FMT today, along with a colonoscopy. The colonoscopy noted that she had a lot of ulcerations, some of them severe, and didn't note any pseudomembranes, and so now they aren't sure whether she has a C Diff infection or if it could be Crohn's disease or something else...?! After the procedure she felt as bad as before. I suppose tomorrow we will see if she is any better. She is extremely disoriented now and totally depressed and defeated and was afraid to be alone, and so I am spending the night at the hospital with her. I'm concerned because I have Lyme disease and while I am not presently on antibiotics, I took three for two years and just stopped taking them a few weeks ago. But she needs someone here with her and my mom has always been here for me, and so I need to be here for her. This is so difficult to watch.
1 Comments
So she had the Fecal transplant? C. diff can cause pseudomembranous colitis. I don't know if this is what she had. Did they actually find C. difficile toxin?
http://www.mayoclinic.org/diseases-conditions/pseudomembranous-colitis/home/ovc-20169329

Sorry you have Lyme's diseases. We do have a Lyme forum on here. Have you tried liposomes with herbal treatment? A friend of mine is on liposomes which help get the medication into the cell and after years of antibiotics then herbs that didn't work she is finally doing a lot better. I can ask her more about it or see if she can talk with you if you are interested in it. She is on MedHelp as well.

Let me know if your mother improves after the treatment.

regards,
mkh9
Avatar universal
She did have the transplant. Her colon is ulcerated, and so they took tissue biopsies to look for other causes--but yes, she has a definite c diff infection. She is finally showing some improvement 48 hours after the transplant.

I am having some stomach pain and bloating now, but not diarrhea. Praying I didn't contract this from her.

1 Comments
Usually, you don't contract this unless you go on antibiotics. Are you still on antibiotics? Also, I know your immunity is probably low due to Lyme. My friend mojogal on MedHelp said you can write to her about Lyme and liposomal treatment if you are interested in it. Also, anything due to Lyme.  i hope you didn't get it either. Usually you have diarrhea about 10 x a day. So lets hope not. Glad she is improving. It takes some time for the normal bacterial population to come back. Then they can probably give her something to heal the ulcers. That should help. I also wonder if they tested her for Helicobacter pylori. This causes ulcers. Just wondering since they were in there. She may not have that but if they has a sample if it looked like that maybe they could test for it. Let me know how it goes and how she progresses.
mkh9
Avatar universal
I just came across this old post of mine and in case anyone else reads it, I think an update might be useful.

I posted this question in March of 2017. I lost my mother in January of 2018. My family still is not certain what happened.

My mother was diagnosed with C. Diff. in March 2017, as discussed above. She was repeatedly refused admission to a hospital for chronic diarrhea--they told her to go home and take Immodium AD--until she became emaciated. She was treated w/ a fecal microbiota transplant as discussed above and sent home. She seemed to improve a bit for a few weeks and then crashed again.

In December of 2017, my dad took her back to the hospital. The attending physician lectured my father about allowing my mother to become malnourished...!!! He had repeatedly sought help and no help was given at the hospital. Anyway, she was admitted, and then a series of catastrophes occurred:

*Her blood pressure kept crashing to dangerous levels and she was transferred to the ICU. They finally determined she had a large duodenal ulcer that was bleeding internally and she had a surgery to close it.

*She was diagnosed with an exotic parasitic infection and my dad was interrogated by the state health department for an hour about where my mom had traveled internationally. (She never left the country, and had not left her home for years because of her illness except to see doctors.) The doctors told us she never had C. Diff. at all, and that her blood test was a false positive. She was quarantined and we had to wear gloves, robes and masks to be with her.

*She was diagnosed with pneumonia.

*She was un-diagnosed with the alleged parasite; the infectious disease specialist said that that too was a false positive and so she was no longer quarantined.

*Another ulcer was discovered near her colon and she had to have surgery for that.

*She was diagnosed with a rare opportunistic infection the ICU doctor said she had only ever seen once before, 20 years ago in an AIDS patient in Baltimore.

*They told us her most recent surgery caused a blood clot in an artery in her leg--a 0.05% chance of that happening--and that if she didn't have surgery to unblock the clot, she'd lose her leg and if she lost her leg, we would lose her. So they did the surgery to repair it. And we lost her anyway.

They never conclusively determined what the cause of her illness was. They had told us two different infections were to blame, and then they said that they believed she either had ulcerative colitis or else Crohn's disease. Ultimately, they put ulcerative colitis on her death certificate, but that doesn't make any sense of the duodenal ulcer, and it doesn't seem to make sense that she never had digestive health problems until her 60s if this was indeed an autoimmune disease.

My mother complained from the time she had a surgery to fuse her spine that "the metal" (titanium) made her ill. She never felt well after that surgery and we came to think she might have been allergic to the titanium, and/or it may have triggered her immune system to go haywire. She went back to the spine surgeon to ask if she could be allergic (this was before the diarrhea was a major problem for her) and he said yes, probably, but by then it was too late to do anything because the bone and tissue of her back would have grown around the metal implant and they couldn't remove it without risking paralysis.

So I am posting this just as a caution to please be wary of diagnoses if the treatments you're given do not work for you. We trusted that the doctors knew with certainty that my mom had C. Diff., and they simply dismissed her and then neglected her after her fecal microbiota transplant until it was too late to save her, when she was finally diagnosed with an autoimmune disease. Be wary, and do not hesitate to seek out second and third opinions if diagnosis + treatment do not lead to improvement in your health.

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