Anyone here over 75?

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lionne
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Anyone here over 75?

Postby lionne » Fri Sep 04, 2020 12:49 pm

This is my first post as I'm brand new here. I'm so relieved to be able to see a range of experiences with C. diff. Mine began in April 2020 when I had a couple of courses of antibiotics (don't remember which ones now) for a blockage of my salivary gland that made my jaw swell up. It's called sialoadenitis. At any rate, I was diagnosed shortly afterwards with C. diff and had a short course of Vanco. Now a little over 3 months later, in August, I was diagnosed with a recurrence of C. diff. Now I'm on the Vanco taper which lasts over a month. I'm on day 8 of taking 4/day for 10 days, then on to the rest of the taper.
I can't remember ever having C. diff in my life before and now I'm seeing that maybe I'm stuck with it forever. An ICU nurse who is a friend of mine told me about the FM procedure and it sounds kind of terrifying at this point. My doc hasn't even mentioned it yet.
I'm just wondering if there are any other folks in their old age (I'm actually 81) who are dealing with this and posting here. I am fully aware now how life threatening this infection can be. It's the last thing I thought would take me out at the end.
Please let me know your experiences.
Thanks.
Andrea

beth22
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Re: Anyone here over 75?

Postby beth22 » Fri Sep 04, 2020 9:46 pm

I am not over 75, but others are, including one of our moderators who had FMT when she was in her 70s. I have had more than one FMT and it is not as scary as it sounds. It is done via a colonoscopy. You are not at that point yet. Hopefully, this taper will help you.

My mother got c diff when she was 86. She also had a recurrence or two, but then did not get any more despite taking antibiotics for various infections later on. She took a daily probiotic though after her c diff experiences. She died last year at the age of 98.

lionne
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Re: Anyone here over 75?

Postby lionne » Sun Sep 06, 2020 3:06 pm

Beth,
Thank you so much for your response. I am now on Day 10 of the vanco taper. Feeling a little bit improved. Still interfering with my sleep. But your reply reassured me a lot. It helps me to hear others experiences so I don't panic.

Bobbie
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Re: Anyone here over 75?

Postby Bobbie » Mon Sep 07, 2020 12:29 pm

Lionne,
Hello from a fellow almost 80'year old.

I've had c diff 3 times - 1993-1997, ' again in 1999, and again 12 years later in 2012. FMT in 2012. All episodes were related to antibiotics. My youngest son had c diff in 1993 and was the youngest and one of the first on oral Vanco (4'years old).

Have side effects from c diff damage but still alive and 80 in December.

C diff can be dehabikitating and last for a long time, but in the majority of cases, it is short lived and treatable. You sounds as tho you are responding well to the Vanco, it was a life saver for me and allowed me to work and travel. Remember, there is also Dificid -- not available when I had c diff. And FMTs are a life saver for some.

Best wishes and prayers. Keep posting.

lionne
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Re: Anyone here over 75?

Postby lionne » Mon Sep 07, 2020 12:50 pm

Bobbie,
I now feel like I have a companion my age here. It's very reassuring.
I'm still having sleep disturbance. Feel like I have to get up and go to the bathroom many times a night. During the day I can go for long stretches without feeling that urgency.
Started the twice a day part of the taper today. Many days to go still.
The doc told me to let them know if I get to the every other day part of the taper and am still having loose stools, in which case they might extend the taper.
I'm sure glad the part of my life when I had UTIs often is over. An OB/GYN doc started me on estrace and it completely stopped those in their tracks. That was a reason for many antibiotics, though I never got C. diff.
Anyway, onward.
Thank you.

Bobbie
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Re: Anyone here over 75?

Postby Bobbie » Mon Sep 07, 2020 11:41 pm

lionne,
I ageee it helps to have someone our own age to talk to - especially with c diff altho it is not a discretionary infection.

UTIs were involved in my c diff, too. There is a lot of info on the site that might help prevent them. Put UTI in the search box. Also, see the CDI forum.

I also have IC - Interstitial cystitis. Double whammy. Estrace has helped me, too. Try eliminating fluids 4 to 5 hours before bed. This is not always possible, however, since fluids help prevent UTIs. I've had insomnia for years and hate anything that disturbs my already limited sleep.

Where do you live? I live in th KC metro area on the Kansas side. The site has members around the world. Roy, one of our administrators, lives in the U.K.

Best wishes for a successful tapering of Vanco. Keep posting.

lionne
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Joined: Tue Sep 01, 2020 8:58 am

Re: Anyone here over 75?

Postby lionne » Tue Sep 08, 2020 11:47 am

Bobbie,
Yes, I can see that C diff hits any age. I think I feel my age makes the difference for me that I don't have the physical endurance I had 10 or more years ago to fight things off. I'm lucky not to have too many underlying illnesses - the main one being Afib, for which I have no symptoms but am 5 times more likely to have a stroke than those who don't have it. And since my mother went out with stroke, I know it's slowly wearing on my heart. The medication for that - eliquis - costs me about $180/month out of pocket. A I also have neuropathy in my feet and lower legs that takes a few hours every day to wear off when I get up. For that I have to take gabapentin in the mornings. The only other thing I take a prescription for is being hypothyroid, which requires a supplement. And for years, I've taken glucosamine for arthritis in my thumb joints from years of typing at work.
So far with this taper, I seem to be stuck in the second phase - loose stools with periods in between of what seems like they must have turned to cement. I'm in the twice/day for 7 days part now of the vanco.
One thing I've done is look up what are the foods most high in probiotics and put them on my grocery list. They're going to take getting used to - for example, sauerkraut. And of courses, I've been taking a probiotic supplement for years.
I'm so glad to have found this forum.
Oh, you asked where I live. I've lived in the same house in Portland, Oregon for about 25 years. I live alone and have a daughter and son-in-law nearby and also two grown grandchildren here in Portland.

beth22
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Re: Anyone here over 75?

Postby beth22 » Wed Sep 09, 2020 12:45 am

Lionne - start slowly with those foods like sauerkraut. Some people, including myself, are unable to handle them. Try one new food at a time and give it a couple of days to see how you react.

lionne
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Re: Anyone here over 75?

Postby lionne » Wed Sep 09, 2020 12:26 pm

Thank you for the caution about probiotic foods. I just bought some kefir yesterday but haven't tasted it yet.

Bobbie
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Re: Anyone here over 75

Postby Bobbie » Wed Sep 09, 2020 12:30 pm

Lionn,

Your recovery sounds typical but too soon to tell.

See the Three Day Rule. It is not medical advice. It a rule of thumb I made up years ago.

Yes, age can be a downer. I have many problems but have outlived many "healthy" friends.

A shame Portland is having so many problems - a lovely city. Are you affected by the fires? Unfortunately, stress can affect the gut -'hard to not be stressed in today's wild world.


From The CDI Forum

Many people (approximately l in 5) develop IBS after C. diff. The symptoms are similar to C. diff. - sending many to be retested time after time. C. diff. drastically irritates and inflames your GI tract. Don't expect things to return to "normal" immediately. IBS is not a definite diagnosis but a syndrome - a group of symptoms. Testing should not be done when you are On c diff meds or just off them. (See info in CDI under Diagnosis and Testing.)

The Three Day Rule: Don't be alarmed by mild symptoms unless you have three "bad" days in a row or if your symptoms become drastically worse. In this happens, call your doctor. Please remember, this is just a guideline to use when you panic after one or two bad days and think, "Oh, IT'S back." It doesn't always apply, but what does with C. diff. ? It's a variable and frustrating disease.

Many people have said this rule helped them during their bout with C. diff, and they are using the phrase on other C. diff. sites. It can be helpful in telling the difference between IBS and a C diff relapse. Remember, however, I "made up" the term during my first bout of C diff because it fit what I was going through. It IS NOT medical. If in doubt, call your doc.

Keep posting. We are here for you, and you will eventually recover.





.

roy
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Re: Anyone here over 75?

Postby roy » Wed Sep 09, 2020 1:10 pm

When we say try a small amount of new food it's just a spoonful.
Start small and build up each day.


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