81 female may have won the battle against CDiff

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tgould
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81 female may have won the battle against CDiff

Postby tgould » Fri Feb 17, 2017 11:24 am

My mother, 81 year old female, began her battle with CDiff the same way it seems the majority of posters have. She was prescribed clindamycin for a dental procedure. For an elderly person, my mother was in perfect health. She has suffered with Pustular Psoriasis for many years, and has been on a regimen of Humira for the past 3 years. Taking Humira and occasionally a booster of steroids during a flare up has kept her Psoraisis in check.

In late Sept 2016 she had a dental procedure. After reporting pain and irritation in her gums the dentist prescribed two rounds of Amoxicillian, a round of clindamycin, and then a final round of Metronidazole. She didn't complete the last round of antibiotics because she ended up in the hospital with severe diarrhea. In the hospital they discovered that all of her bacteria had been irradicated in her intestines. She had C-Diff two years prior, and with her history they suspected C-Diff and tested, but the results were negative. She was in the hospital for a week and out for a week before her 2nd bout of C-Diff was confirmed. The GP prescribed Metronidazole (keep in mind that this was her 2nd bout with C-Diff and third round of Metronidazole). She finished the two week prescription of Metronidazole andtested negative for C-Diff in mid November. She continued with the severe diarrhea and became weaker through the Thanksgiving holiday. Shortly after Thanksgiving she tested positive for C-Diff (3rd time having it) and was given Metronidazole again. By the 2nd week in December she had deteriorated so much, the diarrhea had continued, and she became dehydrated due to that and not being able to keep anything down. She was taken to the emergency room and sent by ambulance to a different hospital due to the GI doctor being out of town. This ended up being the most fortunate thing to happen in months. At the new hospital they put her on Vancomycen and she consulted with a new GI doctor. She also began seeing the Infectious Disease people. After 3 weeks of full dose Vancomycen and a two week taper, two weeks later she tested negative for CDiff. A week after that she had a colonoscopy that diagnosed her as having UC. It seems that she had it for years, but the Humira had been treating it. I believe we may have a happy ending. She began taking Predinzone in massive doses this past Monday. After 4 months of decline, diarrhea, loss of 30 pounds, much weakness and depression, she can finally see the light at the end of the tunnel.

I've been scouring this forum throughout and it has helped me to ask the right questions and trust my own judgement many times when my Mother was two weak and tired to care. Thank you for giving everyone a voice to share experiences and possibilities! I know that at least two times in the last 4 months she was close to the end of her life. I kept thinking, how could this happen, she was in perfect health. But from reading of other peoples experiences I have realized that I need to focus on what we can do to prevent a recurrence rather than worry about how it began. I hope to spread the work to others about the importance to avoid broad spectrum antibiotics at all costs. The only negative thing I could say about the comments was that often when offering support the comment was made to not worry so much, only the elderly are at serious risk of dying. I don't think the elderly should be at more risk. And if they are, it's because the medical profession writes them off and doesn't treat the C-Diff infection as life threatening. I think the most serious side effect of diarrhea should be addressed more proactively by the medical profession.

I know that having recurring C-Diff will require that we be vigilant for the rest of her life about avoiding antibiotics, taking probiotics, and monitoring changes in bowels. I really appreciate that this forum has been available to find answers. Thank you and good luck to all suffers and their care providers:)

tgould
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Re: 81 female may have won the battle against CDiff

Postby tgould » Sun Feb 19, 2017 6:59 pm

My Mom began showing signs of having C-Diff in early Sept 2016, and was admitted to the hospital on Sept 13. She had been prescribed metrinitizole by the Dentist on Sept 5th. I'm not sure why the Dentist prescribed it, I suspect they he realized that Mom may have contracted C-Diff. I believe that because she had taken it before being put in the hospital it prevented her from being diagnosed and caused her C-Diff to get a strangle hold on her gut. She was in the hospital from Sept 13-21st. During that time they tested at least a couple of times for C-Diff but it just came back negative. She had severe diarrhea the whole time she was in the hospital, and it continued for several months. She didn't test positive for C-Diff until Nov. 11th.

By this time she was seeing a GI due to her hospitalization. The GI diagnosed her as having IBS and started her on Balsalizide. When that didn't make a difference he began her on Uceris and made plans for her to begin taking Remicade (expensive infusion treatment for UC). Her second hospitalization on December 18-23 put those plans on hold. It seems odd to me that the GI didn't even consider that the C-Diff may have been causing her problems.

During her second hospitalization the new GI suggested that if she had Colitus it may have been caused by the C-Diff. So his plan was to 1st, cure the C-Diff then see what was going on in her intestines. She also consulted with the ID doctor, and began taking Vancomycen while in the hospital. All together she was on 3 weeks of 4xday Vanco, and then a two week taper (this was the new GI's suggestion). She had her last Vanco on January 24th. She has tested negative twice in the past six weeks. She had a coloscopy to see what was going on Feb 13. The GI said she has UC, and has had it for many years. They also tested for C-Diff again and it was negative. It appears her treatment for Psorasis has also been keeping the UC in check.

One thing that has helped us to keep everything straight and communicate with the Drs is that I created a spreadsheet of the past 4 months that included any medication began or ended, any Dr visits and diagnosis or prescription, and any hospitalizations. It has been helpful when seeing a new doctor to be able to look at the document and answer his questions about when was...? I don't know how anybody could do this on their own. I know I could have lost my Mom a couple of times in the past four months. When this began my sister and I decided that we would go to war against this C-Diff. Little did we know how accurate that description was. What started as a minor dental procedure in mid-August has taken over 5 months of my Mom's life. She has been severely depressed, which isn't like her at all, and lost over 30 pounds, which she couldn't afford to lose, and has become extremely week. If I could do anything differently it would have been to switch doctors sooner and trust our guts more.

I pray for anyone, any age, who has this horrible illness. I hope that those who have died, have not done so in vain, the number of people who have died should at some point be a wake up call to those who can make changes to this diagnosis and treatment. We were prepared to do the FMT next, and who knows, it may still happen. If I've learned nothing from this forum it's that there is no garentees. One of my favorite sayings used to be there's no where to go but up. But with this illness there is always a down around the corner, so I couldn't even say that.

Good luck to all!

tgould
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Re: 81 female may have won the battle against CDiff

Postby tgould » Mon Mar 13, 2017 10:54 am

Update, 2 months CDiff free. My mother is still recovering from this CDiff battle that started 7 months ago. She has lost 30 lbs and has been hospitalized twice. She is now taking Probiotics, Prednizone (8 week taper from 40mg) and Lialda for UC. She is having major fatigue issues due to the Prednizone, but is beginning to get her appetite back. I am hoping that when she get's off the Prednizone she will actually begin to recover. This whole process has made me hyper sensitive about every medication and side effect. I think 60 days without CDiff is pretty good, but I will feel better when it's been 6 months and she can walk without the aid of a walker or wheelchair.

tgould
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Joined: Sun Jan 22, 2017 4:26 pm

Re: 81 female may have won the battle against CDiff

Postby tgould » Wed Jan 01, 2020 8:50 pm

Jan 1, 2020
My mother won that battle. The Cdiff hasn’t come back. We had a scare about 6 months after the last episode. She came down with a bad cough and ended up in the hospital where they quickly put her on antibiotics. I insisted that she also be put on Vancomycin, and luckily they consulted with the infectious disease doctor, who suggested that she be tested for influenza. That came back positive and the antibiotic was stopped. She did not have a relapse, and has been CDiff free for almost 2 years. I think the most important thing in her recovery has been our willingness to disagree with doctors and fight for an answer.


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