Pretty sure I'm starting to relapse.

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Davidtm
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Pretty sure I'm starting to relapse.

Postby Davidtm » Fri Dec 22, 2017 8:00 pm

I hate that I'm even having to write this. I'm 10 months out from my fmt and greatly concerned I'm relapsing. I had m 3 days ago and pains/discomfort since and then today what looks like blood tinged m. I'm sorry to post here those details but I just wanted this to be seen. It's formed but something doesn't look right beyond how i described. It always starts out that way for me and then turns ugly fast. I just don't know what to do. My biggest fears are this happening and ruining everyone's christmas. I don't even know how to go on and forward to beat this. I'm a mess mentally. I can't get a test yet because it's not the right consistency but my presentation gets like this. I don't want to get stuck on the vanco train again and I can't get another fmt because it was a nightmare to get my donor And they are not qualified. I just don't see what else it could be and I havent talked to a gi in months because they retired. Where do I start!!

OCmama
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Re: Pretty sure I'm starting to relapse.

Postby OCmama » Fri Dec 22, 2017 8:30 pm

There are A LOT of viral illnesses going around, I have had two bouts of D that lasted long enough that I tested (last one lasted 2 weeks!). But I was negative both times! I am also 1 year out.

I would start by calling your general practioner to see about getting a testing order and an appointment set up just so you know that you have a plan. Also if it is C. diff a lot of people have had success with Dificid (myself included).

Lid49
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Re: Pretty sure I'm starting to relapse.

Postby Lid49 » Fri Dec 22, 2017 8:44 pm

I know the feeling I'm in the same situation after 5 weeks Second Fmt, there is no end , my family suffer because of me. Like you I do not know wath to do.
I'm so sorry I was hoping for all of us on this website a better outcome.
Lidia.

NanciT
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Re: Pretty sure I'm starting to relapse.

Postby NanciT » Fri Dec 22, 2017 11:52 pm

Davidm

Get into see another GI, it can be other things that are going on. Make sure to get your records from your old GI. So often people can get Post CDIFF IBS and it can last a long time, getting in and having things evaluated is really the best option.

Sorry you are not feeling well, there are lots of bugs going around now too!

NanciT

beth22
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Re: Pretty sure I'm starting to relapse.

Postby beth22 » Sat Dec 23, 2017 2:20 am

I used to get M sometimes too and Pepto Bismol helped me. I never took a lot, but it seemed to help. Also, there is a product called EnteraGam that is supposed to help the immune system in the gut. It is a Rx, so you would have to have your doctor prescribe it. There are also other bacteria that can cause M with B. I had one called campylobacter. I would ask for a test for not only c diff, but do a culture to see if you have any other pathogen. BTW, the campylobacter that I had did not need treating. It went away on its own.

MKW
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Re: Pretty sure I'm starting to relapse.

Postby MKW » Sat Dec 23, 2017 11:11 pm

Hi David, I had my FMT a few weeks after you, first week of March 2017. I still fear relapse. My PCP diagnosed me with PTSD. I have IBS, so I will have days sometimes a week or two I'm fine, then develop cramping leading to D, that proceeds to complete emptying (not to be too graphic), just like when C Diff starts. ...It's like reliving the nightmare of relapse EVERYTIME it happens. Then it's just wait and see. C Diff progresses, IBS stops if I don't eat anything. ... The point is every time I experience a colon function / BM abnormality I psychologically relive relapse cognitively and emotionally.
I think that for those of us that medication failed, we feel a desperation because the only thing that worked was a "non-FDA approved" experimental procedure. Also, I think you had to go a ways away to get your FMT like me, and having it done wasn't super easy accessible like a lot of people.

There are many other things that could cause the symptoms you have described. Try to be as objective as you can be, and report your symptoms to a doctor if you do not improve. C Diff is wait and see. And that waiting and not knowing, is for me one of the hardest ordeals I have ever had to cope with personally. Because no matter how much a person says to you your chance of relapse is extremely low unless you take an antibiotic, part of your mind is saying - but I could be the one. There was a poster on here just recently who had it come back after 9 months.... i asked her - did your doctor give you an explanation? is it relapse or new infection? she said No, nothing. No explanation. ...Seeing posts like that makes me crazy because it reaffirms my fears. I actually look at Twitter everyday for developments with C Diff treatment. There are so many products in stage 3 trials. A new antibiotic, an enema that will work like FMT but be FDA approved, oral Microbiota restoration pills, a vaccine. There is such potential for profit with C Diff treatment that we can be certain better treatments are on the way. I try to look at it like even if I relapsed again, I would make it, and in a few years all of this is going to get better for us.
Just please know, you are not alone in your fears and the anxiety you experience. I had to go on Klonopin myself a couple months back. Also, this time of year is ridiculously stressful. Stress can cause all types of GI dysfunction. Please keep us all posted on how you are doing, regardless. You are always really supportive of everyone on here, and we all appreciate that, and are here for you too!!! - Melanie

FrankS
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Re: Pretty sure I'm starting to relapse.

Postby FrankS » Sun Dec 24, 2017 1:00 am

David

There could be many other causes for your D. I know what it feels like though to anticipate another relapse and it is not fun, especially this time of year. I would call your PCP and have them order a test and get an appointment so they can get you on medication if needed ASAP. Also if it did come to another FMT and you don't have a donor, there are clinics that provide it via a standard donor (i.e. Mayo clinic).

Ril
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Re: Pretty sure I'm starting to relapse.

Postby Ril » Sun Dec 24, 2017 11:49 am

DavidM,
Same as NanciT. It is hard to get a GI appt this time of year but line one up ASAP. You should have one available anyway with a c diff history.

Try to stay calm and don’t jump the gun. If as you say your stool cannot be tested that is a good sign as far as c diff goes and you may have another issue. You ask how to start- you start just this way. If things go south before you have an appointment call your PCP or go to urgent care for evaluation and possible testing but right now, if it were me, I would wait for a dr’s appointment and/or see if things normalize or pass.

MKW
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Re: Pretty sure I'm starting to relapse.

Postby MKW » Wed Dec 27, 2017 10:33 am

Hi David, hope you made it through the Holiday OK, and that all is well! I have had some bad GI symptoms this week myself. It can be truly terrifying. But I have just told my family members - I am sick with Christmastime.

Davidtm
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Re: Pretty sure I'm starting to relapse.

Postby Davidtm » Thu Dec 28, 2017 3:10 pm

Thank you everyone for the replies. Things are still on the fence and I don’t know what is going on. I’m just playing the wait worth watch game. Some of the symptoms have continued for the last week but nothing testable and the plan is to test if it gets to that point. It’s hard because this is not the normal I’ve had for the last 10 months and I’m hoping it’s just anxiety throwing things out of whack. Seems to be up and down good and bad almost like my body is trying to fight something off or fight off a relapse. I guess time will tell. Usually relapses come on fast for me within 3 or 4 days of a downtrend and when I’ve had ibs its been for a day or two then things normalized. I feel like I’m somewhere in the middle of that and not sure which way it’s going to go.
Has anyone had Ibs for more than a week?
Has anyone had a relapse come on slowly over time?
I feel like my first relapse slowly occurred over 2 weeks with good and bad days until worse and worse.
I just don’t want to think it could be happening and would be shocked if it did after so long. I know it’s uncommon to happen this far out but I guess I won’t know for sure until I’m able either see improvement or have something that I can test that won’t be rejected.
Thanks again everyone. Hoping this rollercoaster returns somewhere normal

Lid49
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Re: Pretty sure I'm starting to relapse.

Postby Lid49 » Thu Dec 28, 2017 4:54 pm

My Ibs stay for a week but not necessary with D, more pain gas M. Hopefully you will be ok.
Hanging in there.
Lidia

Davidtm
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Posts: 225
Joined: Mon Jun 27, 2016 10:15 pm

Re: Pretty sure I'm starting to relapse.

Postby Davidtm » Fri Dec 29, 2017 4:28 pm

At the dr trying to get seen for a test since things aren’t looking good and are testable. Been declining over the last 9 days. Hope I can get seen soon :(
Hoping for a miracle or at least dificid

beth22
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Re: Pretty sure I'm starting to relapse.

Postby beth22 » Fri Dec 29, 2017 5:20 pm

If you are going to test, test for other pathogens as well, not just c difficile. It could be something else like salmonella, campylobacter, etc.

MKW
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Re: Pretty sure I'm starting to relapse.

Postby MKW » Fri Dec 29, 2017 5:51 pm

Hi David, well at least you are testable and won’t be in psychological limbo. ... the first time I had c Diff my symptoms came on gradually over a week or more about a month after taking Clindamycin. My three recurrences were rapid severe onset. I have always wondered if it recurred now with a somewhat developed microbiome if it would come on gradually, just like you are wondering. But... I ALSO always wondered if I had been given Dificid the first time BEFORE I subsequently totally wiped out all my good flora with Flagyl, if one round of meds would have done the trick leaving my good flora mostly intact. If it is C Diff, demand Dificid if you can. But also it could very well be something else so make sure they test you for other pathogens as others previously said. Your chance of recurrence is really low at this point.
I am having problems myself this week with IBS and have had a lot of weight loss. ... it’s like a nightmare that won’t quit.

Davidtm
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Posts: 225
Joined: Mon Jun 27, 2016 10:15 pm

Re: Pretty sure I'm starting to relapse.

Postby Davidtm » Fri Dec 29, 2017 7:40 pm

Thank you both for the replies. I got in to see the dr and he thinks it’s just ibs. But I told him I know how quickly this can turn. I wasn’t prescribed anything but given a collection cup for a pcr. Naturally I know it probably won’t get results till after the new year. I’ve always had vanco on hand for when it turns bad after I’ve submitted a test. But I don’t have any now and it’s scary. I guess I will just return if things get worse before the test results return and demand to be treated empirically. But I reserve that for it being just like other relapses. I hope if it is it doesn’t go full blown before I get test back.


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