Pattern of recovery?

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Fish1
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Pattern of recovery?

Postby Fish1 » Sat Sep 28, 2019 7:36 am

I seem to be having a pattern of recovery and didn’t know if any others had some of the same issues I am experiencing. Just as a reminder, initially was diagnosed over five months ago. Did well on 10 days of vanco then had a relapse a little over two weeks later. Was prescribed vanco taper, did well but three weeks after completion had episode of diarrhea followed by constipation accompanied by muscle cramps. GI and I agreed PI IBS. Constipation was bad enough that I ended up in ER because I couldn’t pass anything. They gave me an enema and after that things were going working great, for about three weeks. Suddenly, I experienced two days of watery diarrhea. First day went four times but next day only once. Went back to bland diet and Fodmop diet, also upped probiotics again. The next day had soft poo, the next day no poo, and I started experiencing symptoms of possible constipation again with bloating, lots of stomach sounds and pain on sides, etc. so I started eating chicken and veggies again and added in some Canned pears. In those three days, again I had terrible muscle cramps in legs. This morning I went poo again and it was not accompanied by any watery diarrhea but was formed but not solid really. I’m beginning to think this is a pattern for me. The leg cramps are what is so confusing as I haven’t read any posters who have experienced this in recovery. The last time
I chalked it up to constipation because I was straining. That isn’t happening this time so I just wondered if anyone out there had similar symptoms during recovery. Everything going well...the diarrhea episodes, then constipation and severe leg cramps. Should I just assume this is normal IBS and recovery? Thanks for input. I was so frightened when the diarrhea first started back but then it stopped when I changed diet. Just don’t know what to think and trying not to freak out if it happens again.

NanciT
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Re: Pattern of recovery?

Postby NanciT » Sat Sep 28, 2019 9:34 am

Recovery is VERY individual. We have posters who are treated once, go back to eating and we don't hear from them again.

But we also have a great deal of posters with IBS and various symptoms that may last for months or in my case years.

I had problems after 3 months on Vanco, not while I was on it. I ended up being diagnosed with Pelvic floor dysfuntion which caused me to always feel like I had a bladder infection, on and off leg cramps and pelvic spasms. I also had IBS, the symptoms you are describing.

Things improved after my second year post CDIFF but here I am 5 years later, I get a flu/virus as did my family and a few coworker. They all recovered in a week. For me, it lasted a month of D....I was actually tested for CDIFF twice and its taken me 5 weeks to recover.

I believe my gut went through alot( I had 5 relapses over a year with CDIFF 2014/15) and its been a long recovery but I was left with some things.

I have learned to go bland just as you did, started on VSL#3 again and accept this is me now. I still wear sea Bands on and off

I saw my GI many times over the years of recovery, the only thing that did help was Levsin. I also started Levsin again with this recent bout, its an anti spasmatic.

As far as your leg cramps, its good to check with your MD. I had constant low potassium in recovery which I later found out was a rare side affect from Vanco.
We generally say Post CIDIFF BM's can be all over the place and that can last awhile.

Hope this helps

NanciT

lunasdad
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Re: Pattern of recovery?

Postby lunasdad » Sat Sep 28, 2019 1:24 pm

In my other posts I have mentioned that for me when things start to go badly my legs start to cramp and Infeel fluish. Generally my bowel issues follow. So far during recovery it has been the nausea and body aches that have effected me the most. I’m starting to also feel constipated as I am going very little.

Fish1
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Re: Pattern of recovery?

Postby Fish1 » Sat Sep 28, 2019 5:21 pm

NanciT I can’t believe you went through 5 relapses, that’s so sad
But also good to know you finally recovered.
So it gives hope. Lunasdad my leg cramps are better today however I am beginning to think it’s c diff again today, as I just went poo and had nothing but yellow mucus. If it continues I’ll call doctor on Monday and hopefully be able to get in. Last time my wbc was normal so they didn’t think it was back and eventually Stool went back to normal. Is a wbc a good indicator of it being back, because I know I’ll probably stool test positive. I am so depressed over the possibility that it’s back I can’t even function now. The people on this forum are the only thing that really makes me feel better because no one else understands the emotional toil it is taking on me. I’ve lost 40 pounds over the last 5 1/2 months. I needed to lose but I’d rather be chubby and feel good and have my life back. Sick of people telling me how good I look, then they ask me what I did to lose the weight and I tell them. Not so attractive anymore. Just a Little rant and feeling sorry for Myself. The main thing is my Little grandson who I adore with every ounce of my being. I won’t let myself be around him with active infection so fearful he may get it even though I am a cleaning machine. Right now my stomach is rolling. Did anyone have yellow mucus and it wasn’t a relapse just IBS?

NanciT
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Re: Pattern of recovery?

Postby NanciT » Sat Sep 28, 2019 6:08 pm

Follow up with your GI . If it does return and only if it returns, I HIGHLY recommend Dificid. If cost is an issue, there is info on the site and you can get it at a big discount from the drug company. It is what saved me. We have had many people on the site do a 30 day taper and recover. I failed the 10 days but went on a longer taper and finally cured.

I always tell posters to be careful, you don't want to over treat. When I relapsed, I knew it was back but I also had vomiting with CDIFF, it's not very common but I must have had a bad strain.

It can be very depressing, when the gut is sick it does affect our mind. We have had several thread about this. You WILL get better, recovery can be slow but just know there are birghter days ahead!!

NanciT

lunasdad
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Re: Pattern of recovery?

Postby lunasdad » Sat Sep 28, 2019 8:35 pm

When I was first diagnosed my wbc was fine. My doctor dismissed my issues as stress and it wasnt until the Er doctor corrected him and said I tested positive for cdiff that I was treated. From what I have on this site your bowel movements can be all over the place for awhile and unless it’s absolutely necessary should you take antibiotics again to treat. People follow the three day rule which is 3 watery bowel movements a day for 3 days. Right now for me I had my first relapse and retreated. For about 3 weeks I felt awesome but over the last week my leg pain, nausea and fluish feeling came back but so far I have not had wbm”s just going to bathroom 2 times a day small pieces not a lot of volume (sorry to be gross) with a lot of gas. I’m gonna ride it out and see what happens. I have 2 great doctors that are really helpful and they told me my next step is Dificid and an FMT (which I do not want to have at all!) Before getting CDIFF I suffered with IBS for along time and I will tell you I would sometimes have stools with mucous. I am not doctor so you should follow what you are comfortable with.

beth22
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Re: Pattern of recovery?

Postby beth22 » Sun Sep 29, 2019 2:21 am

I have been having leg cramps too and mine are not c diff related, but my doctors checked for vitamin B deficiencies - B12 in particular, as that can cause those symptoms I was told. Low potassium as Nanci mentioned can too. Maybe you should ask to have your vitamin and mineral levels checked.

We have had a few posters describe the yellow M that have not had a relapse. If it continues, definitely check with the GI as that is a classic symptom.

roy
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Re: Pattern of recovery?

Postby roy » Sun Sep 29, 2019 2:47 am

Lunasdad
Your first Dr was correct, If your WBC is normal and even if a C.diff PCR is positive it indicates the type of c.diff that does not need treating.
C.diff is a normal gut bacteria that has the POTENTIAL to cause illness (along with many others).
A normal WBC means no host response and that means no illness is being caused.

https://idsa.confex.com/idsa/2018/webpr ... 72486.html

Fish1
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Re: Pattern of recovery?

Postby Fish1 » Sun Sep 29, 2019 7:52 am

Roy thank you. I am still passing mucus this morning and will
Continue to monitor my symptoms. If I go in to doctor I will request another wbc.

lunasdad
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Re: Pattern of recovery?

Postby lunasdad » Sun Sep 29, 2019 8:42 am

To be clear.....because of my IBS history my doctor thought it was that. Once my PCR test came back he and the Er doctor said to treat. I was going 15 times a day for multiple days and in agony. One moth later, it started again and I was retested, same findings and I was retreated. Basically my doctors treat the symptoms. I find the article interesting and is now making me confused. My symptoms have been coming back and I am holding on to the stool test. My doctor wants me to retest and of positive he will give me Dificid and an FMT. If my wbc is ok, does that mean I pass on treatment?

beth22
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Re: Pattern of recovery?

Postby beth22 » Sun Sep 29, 2019 10:04 pm

Not everyone's WBC goes up. I wound up in ER going about 40 times that day and my WBC was normal. I had the worst relapse of all then though and had to start treatment right away.

Fish1
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Re: Pattern of recovery?

Postby Fish1 » Mon Sep 30, 2019 7:39 pm

Beth22 that’s scary. I saw my GI today and she said she doesn’t think I’m having a relapse because even though I’ve had diarrhea and Mucus it hasn’t been continuous. I’ve gone a day or two in between episodes. She said if it was c diff back I would have continuous diarrhea daily at least. She thinks it’s IBS again. She is doing wbc test and I was hoping to rely on that to be comfortable with her assessment, but maybe not. Guess all I can do is wait. I think I’m gonna find a therapist to talk to because perhaps I’m obsessing too much. My GI said I was right to come in and get checked out but the anxiety is hard on me and my family; I get so stressed. Wish I was a more laid back person. I actually used to be.

beth22
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Re: Pattern of recovery?

Postby beth22 » Mon Sep 30, 2019 11:17 pm

Your doctor is right. An active case of c diff doesn't usually come and go like that, but IBS does.

Fish1
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Re: Pattern of recovery?

Postby Fish1 » Wed Oct 02, 2019 7:51 am

Okay so now I’m constipated again. Last time I went was the 28th, which was mushy and not much. So today is day 4. I’ve started eating my bran cereal again, adding pears today. I guess this is my new normal. Constipation, diarrhea, fear, constipation, diarrhea, fear. Really though I’d rather be constipated than have the diarrhea. I started the binding foods because I was having diarrhea, maybe I shouldn’t do that anymore. I never know what to eat anymore.

Bobbie
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Re: Pattern of recovery?

Postby Bobbie » Wed Oct 02, 2019 12:58 pm

Fish1,

Ask your GI about one of the fiber supplements - Benefiber, Metamucil, Citrucel - and increasing your water intake. Also,exercise can help. Walking is good.


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