New to cdiff and paranoid with my wedding coming up

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Byrn09
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New to cdiff and paranoid with my wedding coming up

Postby Byrn09 » Fri Jul 27, 2018 3:41 pm

I’m a 26 year old female diagnosed with cdiff the end of June. I was immediately put on the 10days of Vanco and within a few days felt like I was going back to normal. It’s since been about 2.5 weeks and I’m just paranoid. I haven’t felt normal since obviously, but was having formed stools x2 a day roughly some days more or less. I’ve been eating activia yogurt twice a day, kombucha 10oz daily and a daily probiotic. I had a follow up apt. Where my doctor feels optimistic about things so far. I’m getting married in September with our honeymoon to follow and I’m just very paranoid about it coming back. The last couple days I’ve been nauseated here and there and still eating bland and my stool has still mostly been formed. I just got paranoid with the nausea and then one stool had been the same color it was when I was sick and then another bm slightly dissolved when I flushed which happened when I was sick. Any advice would be great :/

beth22
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Re: New to cdiff and paranoid with my wedding coming up

Postby beth22 » Fri Jul 27, 2018 5:34 pm

I could not handle Activia yogurt. I also had difficulty with some probiotics. If I were you, I would stop the yogurt for a couple of days and see if your symptoms get better or not. I would also take along a bottle of vancomycin on your honeymoon. In the early days, I always traveled with one. I felt more secure knowing it and it is better to have it and not need it than need it and not have it.

Kuro
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Re: New to cdiff and paranoid with my wedding coming up

Postby Kuro » Fri Jul 27, 2018 5:44 pm

Hi Byrn,

Welcome to the boards! I'm 33, male, diagnosed in early February. So, our cases aren't too far apart.

Please know that anxiety/paranoia about relapse is very, very common. However, you should also keep in mind that 80% of people are cured in 1-2 doses of antibiotics. If you're an anxious person, it can be so hard to shake the fear and not pay attention to every little thing, I know. I'm almost 5 months out and still have my worries. Most say that this gets better with time, but some are helped by things like therapy, anti-anxiety meds, and antidepressants.

Your BMs are going to be off for a while in recovery, possibly a long while. They can come in all shapes, sizes, and consistencies. The "color" that some have with CDIFF also comes and goes. Generally, unless you are having additional symptoms, you're fine so long as you're not having persistent watery D. I was also nauseous at first, mostly when I ate, but that has gone away over time.

Congrats on your upcoming wedding! I'm sure you'll have a great time. If you're really worried, maybe you can sit down with your doctor and discuss a backup plan for that time. Maybe they'd prescribe some Vanco you could take in the event of an emergency, for example. Hopefully, you'll never need that and the one Vanco treatment you've had will work!

Byrn09
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Re: New to cdiff and paranoid with my wedding coming up

Postby Byrn09 » Fri Jul 27, 2018 9:47 pm

beth22 wrote:
> I could not handle Activia yogurt. I also had difficulty with some
> probiotics. If I were you, I would stop the yogurt for a couple of days
> and see if your symptoms get better or not. I would also take along a
> bottle of vancomycin on your honeymoon. In the early days, I always
> traveled with one. I felt more secure knowing it and it is better to have
> it and not need it than need it and not have it.

Thanks beth22! Some people have told me to try keifer instead? Do you know much about this drink?

Byrn09
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Re: New to cdiff and paranoid with my wedding coming up

Postby Byrn09 » Fri Jul 27, 2018 9:51 pm

kuro thanks for your reply! This illness definitely will mess with your head. I’ve been trying to meditate and workout more to help! I’m just paranoid because my symptoms originally came on gradually it felt like and then one day I was super sick. So I just didn’t have the severe diarrhea until later on so now any time I go more than twice a day or feel nauseated/gassy/bloated I feel anxious. Was there anything you did in particular that worked for you? I’ve had some friends recommended keifer so I’m hoping to try that this weekend!

Kuro
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Re: New to cdiff and paranoid with my wedding coming up

Postby Kuro » Fri Jul 27, 2018 10:06 pm

Honestly, I just took my Vancomycin (which might've been unnecessary -- I'll never know), and kept to a very, very bland diet at first. Bread, rice, baked chicken breast, things like that. These are still staples of my diet, though I have added a thing or two since. I do so very slowly. Some people have few problems returning to a broad diet, whereas other people need a lot of time.

As well, I make sure to bleach the toilet using Clorox germicidal bleach wipes (you can buy them on Amazon) after each BM. Beyond that, we have cleaned periodically and gotten a little less uptight about it as time goes on. Trying to do enough but without living the disease, you know?

Lots of people go more than twice a day at first. Everybody's different, but you are generally okay if it's not watery D. Of course, you should always contact your treating doctor if you have any concerns. Don't hesitate, you're paying them to do this!

Personally speaking, I don't drink kefir. I just keep hydrated with plenty of water. When it comes to probiotics, I've taken Align and once tried a multi-strain probiotic from the drug store, but I've found Align gets along better with me. Kefir is a yogurt-type drink you can hopefully get at your grocery store, possibly in various flavors. It has a high probiotic content and very low lactose, so some people do find it helpful. It's a can't hurt, might help type thing, same as any probiotic.

Other than that? Try to stay calm and live your life. Do things you've always loved to do if physically possible. I'm a computer guy, a gamer, so I'm trying to get back into my hobby. It can be tough to focus on that without thinking of your illness, but it's worth the trying.

PS: I have gas problems all the time still. Usually signals that I may have a restroom visit ahead. The nausea, I had at first (while I was still on Vanco), primarily when I was trying to eat my dinner. With time, that went away on its own. If it's really super bad, you could talk to your GI about an anti-nausea medication like Zofran.

Ril
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Re: New to cdiff and paranoid with my wedding coming up

Postby Ril » Fri Jul 27, 2018 10:12 pm

Hello Byrne09 and welcome to the site. Please read the first thread on rules for posting.
You actually sound like you are doing well and are on your way to recovery.
We are almost all paranoid and afraid of a recurrence. That is totally normal. It takes quite a while for that to go away...many months often.
Nausea is common often. It plagued me for a long time. Sea bands helped some. Old fashioned coke syrup helped me sometimes even though it has no scientific basis.
Bland eating adding other foods slowly is the way to go. You will find which foods you tolerate best. And avoid alcohol for now.
Stools will be a “new normal” for an indeterminate amount of time but as long as you do not have water d you are good and you seem to be doing just fine there.

Recovery can be rocky but you will recover. It may take a while to feel normal but you will get there. By the time of your wedding you will hopefully be much better.
Good luck,
Rita

Jenna24
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Re: New to cdiff and paranoid with my wedding coming up

Postby Jenna24 » Sat Jul 28, 2018 12:43 pm

I feel your fear and pain. I too have a wedding around the corner and am still struggling with this horrible stuff. I’m not a doctor so I cannot give you much help on that end but I am just really trying to stay positive. This isn’t how I planned to feel the month of my wedding but it’s what I have to deal with I guess. My fiancé keeps telling me this is a small blip on our life and we will get through it. I have noticed the more anxious I get the worse my stomach feels. Sending you good vibes and I hope that your wedding day is amazing.

Byrn09
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Re: New to cdiff and paranoid with my wedding coming up

Postby Byrn09 » Sat Jul 28, 2018 9:41 pm

Jenna24 thank you! It’s not how I planned it at all either. I already have Crohn’s disease and so because of this I feel guilty sometimes about me having so many health problems at a young age. Every time I feel like I turn the corner something else happens. I’m just feeling defeated the last day or two with symptoms. Every time I ate today I had to go to the bathroom at work and it’s hard to tell if it’s IBS or cdiff coming back! I hope your wedding is everything you hoped for and more!

Byrn09
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Re: New to cdiff and paranoid with my wedding coming up

Postby Byrn09 » Sat Jul 28, 2018 9:45 pm

Thanks kuro. I will try and stay positive. Any advice on what to look for as far as cdiff relapse vs. IBS or just “healing” from this disease? I keep reading about the 3 day rule. But sadly as a nurse I work 12hour shifts so I can’t be going to the bathroom constantly

Byrn09
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Re: New to cdiff and paranoid with my wedding coming up

Postby Byrn09 » Sat Jul 28, 2018 9:48 pm

Ril how can you tell if it’s IBS issues or a cdiff relapse? It’ll already paranoid since I have Crohn’s disease. Thank you for your advice!

Kuro
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Re: New to cdiff and paranoid with my wedding coming up

Postby Kuro » Sat Jul 28, 2018 11:18 pm

Hi Byrn,

Having Crohn's may complicate your situation beyond what I'm familiar with, but I can at least speak to what the usual seems to be. Not a doctor, not medical advice.

In my case, my GI told me to be on the lookout for persistent, watery D. If it's formed, even loosely so, then it's generally recovery or PI-IBS (or just IBS if you already had it). The three day rule you reference isn't scientific, but it's a good rule of thumb. If you have three or more incidents of WD for three days in a row, time to contact the GI. You might need to test.

There are people in other situations who may have more to contribute. Heck, I know people who have gone past the three day rule and tested negative. They were just having an extended PI-IBS flare or maybe a stomach virus. It's a weird condition and each of us is a little different.

Diagnosis and future monitoring is generally based on symptoms. I'm of the belief that I will always show positive on the PCR because I am colonized, not because I am actively infected. It's easy to want to test for peace of mind in hopes of getting a negative (and I admit that the first negative I received did make me feel a lot better), but results depending, doing this can really confuse the situation and possibly cause you to be over treated. I narrowly avoided that by getting a couple more sets of eyes on my case and the testing. I will not test in the future without obvious reason to.

Anxiety/fear/paranoia about relapse is really common for a good while, as Ril said above. I won't lie, it's hard to get past. I'll be five months out on the 12th and I am still wrestling hard with that particular demon because not all of my symptoms have resolved. I should know better, given some people on here needed a year to feel close to normal, but your mind does like to mess with you if you're prone to anxiety. How could one not be afraid of relapsing and losing all of that day to day effort? In reality, at almost five months, my odds of spontaneous relapse aren't gone but are quite slim now. If only my mind would accept that and trust that the remaining symptoms will pass in time! :)

On the bright side, most of the recovered veterans say that the fear does get better with time, and the anxiety and paranoia ease off as you realize you truly are out of the woods.

Of course, this is always something you can discuss with your GI. There may or may not be extra precautions to watch for as someone with Crohn's, I honestly don't know. However, everybody does eventually get better, 80% in 1-2 rounds of meds.
Last edited by Kuro on Sun Jul 29, 2018 12:06 am, edited 1 time in total.

beth22
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Re: New to cdiff and paranoid with my wedding coming up

Postby beth22 » Sat Jul 28, 2018 11:47 pm

Regarding the kefir, there have been a couple of studies that showed people who drank kefir while treating c diff with vancomycin had fewer relapses. The article is listed here on the site. You can type it into the search box. I tried it when I first got c difficile, but have not had it recently. Quite a few posters have taken it and said it helped.


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