Did I relapse or is it just anxiety?

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Byrn09
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Did I relapse or is it just anxiety?

Postby Byrn09 » Mon Sep 10, 2018 12:37 pm

Hi all, quick recap I’ve been battling this illness pretty much since beginning of June. Towards the end of June I was finally tested and treated with vancomycin for 10days. I then relapsed after 3 weeks. I was then put on Vanco for 14 days and then 14 days of every other followed by 30 days of choleystramine. I’m 1.5 weeks off Vanco and fear that it’s coming back.

My BM have more M no B. For the most part are formed but as I flush they disintegrate and it burns a little as I go (assuming because it’s acidic). I also have a lot of rumbling in my stomach. I get married at the end of the month and go on my honeymoon two weeks after that so I’m praying to be better (great timeing right?) I’m not sure if I should call my doctor yet. This has been going on for 5 days. Within two days of starting back on Vanco I’m always feeling better.

OCmama
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Re: Did I relapse or is it just anxiety?

Postby OCmama » Mon Sep 10, 2018 5:35 pm

Because you are getting married at the end of the month I would personally get the ball rolling and test; if it is back I would try Dificid. Sending good thoughts and healing vibes.

Byrn09
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Re: Did I relapse or is it just anxiety?

Postby Byrn09 » Mon Sep 10, 2018 6:41 pm

So my doctor is doing a NAAT stool test first then said if it comes back positive he will do 10 days of dificid. My only concern is if it doesn’t work or if the c diff comes back after that it will ruin my wedding or possibly my honeymoon which is in Hawaii. So it’s a far travel for us from the Midwest. Since the Vanco is provento work should I ask to be treated with that more long term to get through all of this and then try dificid?

georgina
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Re: Did I relapse or is it just anxiety?

Postby georgina » Tue Sep 11, 2018 12:47 am

I've been in "your shoes". I was two weeks in recovery after my first bout of Cdiff and i had my wedding , was on a very bland diet so at the wedding when others were enjoying the wedding menu i was still eating chicken breast and drinking water instead of champagne , but still i had fun and danced all night.

StephanM
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Re: Did I relapse or is it just anxiety?

Postby StephanM » Tue Sep 11, 2018 6:28 am

Hi Byrn,
First a warm congratulations on getting married. I think it is so good you have something so positive and encouraging to look forward to.
CDiff can understandably provoke anxiety. Unfortunately, this can stress the GI tract which is already vulnerable, so the key is keep positive and maintain a discussion with your doctor. This is the most important way you must contribute.
The Vanco could have upset the flora in your tract which might be resulting in these rumblings and irritation you are experiencing, so it may not be CDiff. Sounds like your doctor has thought about putting you on Dificid because their opinion is the Vanco might not be working as well as. The tests will help pinpoint exactly what going. Remember, you may be experiencing pathogens or infections that will not work from Vanco.
Keep on communicating as you have, and explain your situation about your travels and how you feel about this. If you do begin Dificid use, this has a good chance of working so don't be discouraged!
Also, this may be premature but open the discussion with your doctor about FMT. It has truly helped a very high number of people who have not had success with Dificid or Vanco.

Byrn09
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Re: Did I relapse or is it just anxiety?

Postby Byrn09 » Tue Sep 11, 2018 4:01 pm

StephanM thanks for the reply. I did call today and they did the stool sample test with NAAT. They said I should have results in the next day or so. It looked like c diff to me unfortunately. So I’m just feeling down. This whole time I’ve felt positive about it but now after what seems to be my second relapse and with my wedding in two weeks I feel bummed. I feel like I will never beat this stupid infection and I just want to be normal again.
Unfortunately I’m only 26 so I feel like I can have kids, get a dog buy a house, travel etc until this is under control which doesn’t seem like anytime soon

Byrn09
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Re: Did I relapse or is it just anxiety?

Postby Byrn09 » Tue Sep 11, 2018 4:08 pm

georgina, I know I can make it through my wedding and still have fun. I’m just bummed because i feel like this won’t go away and I should be enjoying this time but all I can think about is my illness and feeling sick.

StephanM
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Re: Did I relapse or is it just anxiety?

Postby StephanM » Tue Sep 11, 2018 9:09 pm

Bryn09 terrific job, you are making concrete steps towards your goal. Lets see what the test says first and then set your focus on the next thing.
I think you have a doctor who is listening to your concerns sincerely and this will go a long way.
It might not seem like much but you have other people who will help you along the way, rely on them for their energy and for the professionals for a plan of execution. You already have one blessing in a life partner! So the rest.. kids, dogs, travel will all come for sure. The people on this forum have a lot of experience with this and we all want to see you succeed, so feel free to engage the community.

Byrn09
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Re: Did I relapse or is it just anxiety?

Postby Byrn09 » Tue Sep 11, 2018 9:11 pm

StephanM thank you!

beth22
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Re: Did I relapse or is it just anxiety?

Postby beth22 » Wed Sep 12, 2018 1:16 am

If your test comes out positive, I would probably take the Dificid. If you don't do well on Dificid, you can always switch to vanco, but I just kept relapsing on it too. I would also ask the doctor to give you meds to take with you on your honeymoon in case you need them. I traveled to Europe a few years ago and my doctor gave me an Rx for Dificid that I took with me, but did not need. It is still in my closet. Expires next year and I hope I never need it.

Byrn09
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Re: Did I relapse or is it just anxiety?

Postby Byrn09 » Wed Sep 12, 2018 8:03 am

beth22 Thank you. Since you took the one round of dificid you’ve been fine?

Whyme111
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Re: Did I relapse or is it just anxiety?

Postby Whyme111 » Wed Sep 12, 2018 1:23 pm

Hi Byrn,
I relapsed twice. My last relapse was after Vanco however I went to my GI and he put me on a Vanco taler/pulse which was several months. I definitely get symptoms here and there which tend to cause anxiety because I'm so sure I'm relapsing again but I think I'm slowly improving now and it's been almost 4 weeks off of my treatment. I take Vsl #3 two times a day and S. Boulardii one time a day. I find certain foods definitely irritate me. I wish you the best and completely understand your anxiety. I'm here if you want to talk. :)

Byrn09
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Re: Did I relapse or is it just anxiety?

Postby Byrn09 » Wed Sep 12, 2018 7:15 pm

Whyme111 That’s good to know! How long do I have to wait to know I’m in the clear? I just feel like I’ll always be looking over my shoulder months or years from now and so paranoid.

Byrn09
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Re: Did I relapse or is it just anxiety?

Postby Byrn09 » Wed Sep 12, 2018 7:18 pm

Update: I got my NAAT stool test back and my doctor said that it is NEGATIVE! I’m not sure if I should be happy or sad about this since I still don’t feel 100% and my BMs have been all over the place.

Ajs
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Re: Did I relapse or is it just anxiety?

Postby Ajs » Wed Sep 12, 2018 8:23 pm

I’m so glad it’s negative!!! That’s awesome! Yeah, unfortunately you may have a bit of a long road to recovery, but it’s definitely better than cdiff. Hopefully you’ll improve by the time you go on your honeymoon. I would just stay very safe with my diet. Not taking any risks just yet. Congratulations on your negative test results!


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