So tired... need encouragement

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Zapper
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Joined: Thu Feb 11, 2016 10:28 am

So tired... need encouragement

Postby Zapper » Sun May 07, 2017 5:47 am

Hi all,
Most of you are familiar with my story. Recently I was hospitalized again but this time for norovirus 2 days after my FMT. I'm afraid the FMT failed at this point cause I am back to up all night with urgency. I am having normal bowel movements, although they are extremely painful and most of the time all I am passing is mucus (that's kind of smells). We are well over 20+ bms just in the night time so far.
I haven't been able to sleep a full night since 4/27 (colon prep night). I'm exhausted. My husband is worried sick about me and stressing about my health isn't helping.
I keep trying to tell myself it's post infectious IBS but it's very hard to believe that it would cause me to be up all night with no sleep.
How is someone supposed to maintain a full time job with this? I'm already out of sick time and PTO from all the relapses/procedures/hospitalizations. And of course it does not qualify for FMLA as it is not a disabling condition... although I would beg to differ!!!!
I'm just up at 3am again in the bathroom and feeling down.
Encouragement needed at this point.

Davidtm
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Joined: Mon Jun 27, 2016 10:15 pm

Re: So tired... need encouragement

Postby Davidtm » Sun May 07, 2017 9:30 am

It does get better and eventually everyone gets better. I know how you're feeling and have been there. It's a very difficult thing to go through. That's unfortunate about the noro virus. I had that last year. Hopefully you do just have ibs. Keep positive and keep your Drs informed of your symptoms and stay hydrated. The anxiety kept me up all night and worried during the day. Just keep positive that one day you will be cured. Really hoping good things for you.

amyc
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Re: So tired... need encouragement

Postby amyc » Sun May 07, 2017 12:07 pm

I am going to encourage you to go to the hospital. And demand Dificid if C diff is back, because your extremely long course of vanco didn't cure you.

Zapper
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Joined: Thu Feb 11, 2016 10:28 am

Re: So tired... need encouragement

Postby Zapper » Sun May 07, 2017 12:26 pm

Amyc, I'm here in ER. Pain got bad enough to make me come. Awaiting results for stool and blood. Hopefully not septic again otherwise they will admit me again.

NanciT
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Re: So tired... need encouragement

Postby NanciT » Sun May 07, 2017 12:39 pm

Good to hear you are in the ER with these symptoms, really important to have all lab checked out especially electrolytes. Those being off balance can cause many symptoms also getting a CDIFF test. You may want to ask the ER doc to contact the GI also, sometimes they are able to do that once all of your testing is back to review results with your GI and come up with a plan

So sorry you are going through this, keep us updated

NanciT

amyc
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Joined: Thu Nov 10, 2011 8:15 am

Re: So tired... need encouragement

Postby amyc » Sun May 07, 2017 1:26 pm

Not trying to scare you, but have your husband read this article.

http://www.generalsurgerynews.com/In-th ... ease/41061

roy
Long Time Contributor
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Joined: Sat Aug 02, 2014 1:05 am

Re: So tired... need encouragement

Postby roy » Sun May 07, 2017 1:44 pm

Not sure if that's a helpful post Amy!
Zapper.
Your no where near needing surgery.
There's plenty of options.

Zapper
Regular Contributor
Posts: 209
Joined: Thu Feb 11, 2016 10:28 am

Re: So tired... need encouragement

Postby Zapper » Sun May 07, 2017 4:54 pm

Got my result... c diff positive.. again. 6th relapse!
Back on vanco until GI appt Thursday.

NanciT
Long Time Contributor
Posts: 2260
Joined: Thu Sep 18, 2014 12:01 pm

Re: So tired... need encouragement

Postby NanciT » Sun May 07, 2017 5:48 pm

So sorry...CDIFF again. With that many trips to the bathroom at night, I was concerned. Not sure if you have been on Dificid but talk with your GI about it. Take a look under CDI, many have done a taper and done well. I also had relapsed many times and finally did a taper of Dificid to get rid of it.

Get some rest, hopefully the Vanco will kick in and give you some relief before your GI appt. I would call Monday and explain you were in the ER with a relapse, maybe they can find a spot on Monday for you.

Take Care

NanciT

beth22
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Re: So tired... need encouragement

Postby beth22 » Sun May 07, 2017 5:51 pm

I saw a GI when I kept relapsing with c diff and he kind of casually said - that maybe I should get my colon out. Didn't see him again, but had another FMT. It has been a bumpy road, but surgery is something that is a last resort and I really wouldn't even be thinking of that now. Ask your GI about Dificid when you have your appointment and another FMT or doing FMT enemas at home after you finish treatment.

amyc
Long Time Contributor
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Joined: Thu Nov 10, 2011 8:15 am

Re: So tired... need encouragement

Postby amyc » Sun May 07, 2017 7:39 pm

Dificid time. Vanco hasn't worked for you for a year. If I were you I would want a course of Dificid followed by FMT.


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