Advice on Recovery

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lunasdad
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Advice on Recovery

Postby lunasdad » Sun Sep 22, 2019 5:20 pm

All-

I haven't posted in a few weeks. To be honest my stomach was feeling better for the last 3 weeks that it has felt in 20 years!!!! Fast forward to yesterday and today and I am having body aches, nausea and rally bad cramps. So far no watery D but have urgency that I have not had in weeks. I am taking Florastor and Elavil and I thought all was trending in the right direction. Any thoughts?

brandine
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Re: Advice on Recovery

Postby brandine » Sun Sep 22, 2019 10:25 pm

Hi, lunasdad.

I would advise as I did in my last post to you. It sounds like you're experiencing normal recovery. I went through the same thing... many days of feeling well (better than ever!) and then a couple/few days of not feeling so great. Plus, we have to remind ourselves that we're still going to pick up other bugs, etc., so it could just be a fall cold or stomach bug. I've been working hard at not interpreting every symptom as going downhill or getting c.diff. I found/find strength in my July experience of having full blown c.diff symptoms but not treating--my body recovered w/o treatment after a couple of days of signature c.diff. D. So, now I try to realize that even if I do get D., it doesn't mean it's c.diff that needs to be treated. And ups and downs with urgency, etc. are just a part of recovery. I wouldn't worry!

beth22
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Re: Advice on Recovery

Postby beth22 » Mon Sep 23, 2019 1:15 am

I read that there are already some cases of flu, even though early. It could be something you ate that did not agree with you too, but IBS doesn't usually cause body aches as far as I know. Other bacteria like campylobacter do. Those could be from food poisoning. Did you eat anything out of the ordinary?

CindyP
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Re: Advice on Recovery

Postby CindyP » Tue Sep 24, 2019 2:38 pm

I was three weeks out from the end of my second relapse when I came down with Norovirus. Terrible timing, and my GI doc wanted to treat with a vanco taper for a c diff relapse since my culture showed the toxins. I didn't treat, and got better. It took 10 days to get back to normal.

lunasdad
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Re: Advice on Recovery

Postby lunasdad » Wed Sep 25, 2019 12:22 pm

Thanks Everyone. I am not feeling anywhere as good as I have felt in the past month. I actually had a consult appointment this morning with a CDIFF expert in NYC that pioneered FMT at Mt. Sinai Hospital. I had made the appointment back in August in case things went south. He basically told me that in his experience patients tend to start getting symptoms back 3-4 weeks post Vanco or Difcid, which is around where I am right now. However, because of my underlying IBS he cant be sure if this needs to be treated again just yet because my stomach is not at the point I was at when this first started. I am having mushy, small stools 2-3 times a day, not watery running to the bathroom stools which is what I have had in the past. Also, to add to the fun, over the past few weeks their has been blood when I wipe and in the toilet when I have a bowel movement but it is probably an internal hemorrhoid. If things go down hill I am going to go on 10 days of Difcid (after taking a stool test) and then he will do the FMT BUT he does not think I am there yet. Hopefully things start to improve and I can move on and put my name in the success bucket but we are not there yet. I am nervous and anxious about the idea of having an FMT.

brandine
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Re: Advice on Recovery

Postby brandine » Wed Sep 25, 2019 11:07 pm

Good to hear that you have an expert guiding you. I would encourage you to know that many of us experienced symptoms like what you're having w/o having to treat, so unless you're having the watery d. that is persistent, it may not need treatment (assuming that the bleeding, too, is just hemorrhoids). I had at least 2-3 soft stools a day during the time frame where you're at (sometimes 6-8!)... and for up to 2 months or so after my treatment of vanco ended. But I didn't need treatment, and I'm so glad that I didn't treat prematurely. Now, 4 months post-treatment, most days I have normal bms, but even now I have days when there are 2-4 soft stools, as I experiment with adding in foods I haven't eaten for awhile, etc. But overall I'm feeling way better now than I did 2 months ago. It just takes time. Time, time, time.

Be cautious about over-treatment. Overtreating leads to other kinds of problems. You could be well on your way to recovery! My ID doctor said to wait 48 hours or more even if d. returns., as long as I am otherwise stable. He believes there is an over-treatment problem. I am surprised that your doctor is contemplating treatment with your low-grade (normal for recovery) symptoms. And, as many have talked about on this site, a positive test doesn't confirm that treatment is needed. Most c.diff-expert-Infectious disease doctors treat based on symptoms (persistent d.) and not on positive test results or mere soft stools.

It's comforting to know that the fmt is there if needed, but I wouldn't put yourself there yet :) I hope that things go well for you in the coming weeks!

lunasdad
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Re: Advice on Recovery

Postby lunasdad » Thu Sep 26, 2019 11:45 am

Thanks for the responses. I guess what worries me, above my gastro issues, which seem to be intermediate as of now, is how bad I feel. I am so out of it. Since the weekend I am having awful pains in my legs and body. I am really tired and worn down. Waves of nausea keep hitting me so I really don't feel much like eating. I actually feel almost numb when I am walking around. What is weird to me is that for almost a month I felt better than I have felt in years and then all of a sudden BANG, things are going south again. I definitely think anxiety has a lot to do with this but I am getting so tired of dealing with this, going on 4 months now. I guess my hope is that I feel badly now because my bodies energy is now focused on fighting whatever if eating at me and I need to ride it out. What makes me nervous is that both the cdiff expert at Sinai and my gastro who are working together BOTH believe that I should be retested for CDIFF now and if its positive they BOTH want me to go on DIficid and shortly after have an FMT. This thought of having to have an FMT is frightening to me as I really do not want my situation to get worse. RIght now I am barely hanging in but I am still hanging in, if things get much worse I just don't know if I can manage.

Bobbie
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Re: Advice on Recovery

Postby Bobbie » Thu Sep 26, 2019 12:48 pm

You can manage - because you have to do so. Ain't no other options - except those those that would devastate your family.

Am impressed two docs are willing to work together for you. I would follow their advice.

Many on this site have little support from their friend's/family/workplace, Sounds as tho you have all three.

C diff can be a terrifically emotional disease. I developed PTSD several times so know where you are coming from.

Best wishes and hang in there.
.

brandine
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Re: Advice on Recovery

Postby brandine » Thu Sep 26, 2019 7:50 pm

Yes, lunasdad, hang in there, as Bobbie says. And of course, if your doctors advise you in a certain way, follow their lead, especially if they find that other symptoms are concerning. But it's okay to ask questions about testing/treating when there is no persistent d. Because it could very well be that you're experiencing normal recovery. I can confirm that I also felt very sick and out of it from basically May 14 (when I was first diagnosed/treatment on vanco started) and well into August. There were days I felt dizzy, tired, all-around yucky, weak, and anxious. I started a low grade anxiety med during that time that really helped me. But it honestly took 3 months after finishing treatment before I felt like I was getting back to feeling more normal. I didn't think the day would come after a long, depressing summer. But I am now feeling pretty darn good. Whether you need to treat or not, it is very likely that you will recover and feel well again!

D1dad
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Re: Advice on Recovery

Postby D1dad » Fri Sep 27, 2019 11:57 am

There’s a bug going around here in Ohio. Every year when the kids go back to school it always something. My 12 yr old came home Tuesday pale, D and stomach pains, next day my wife had it, day after I got all of it but the D. As I type this my stomachs still gurgling. When your 6 months recovered from Cdiff it works on your mind, but in no way does it have the death feeling of cdiff.

D1dad
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Re: Advice on Recovery

Postby D1dad » Fri Sep 27, 2019 12:00 pm

Sounds like a trip to the dr for some Xanax may be of help to you. Also try an antihistamine which was recommended to me by my ID doc. No clue why but it helped.

lunasdad
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Re: Advice on Recovery

Postby lunasdad » Fri Sep 27, 2019 6:10 pm

Thanks for the responses and advice. I take anxiety meds which do help and have helped my IBS in the past. Just getting frustrated with all of this. Seems like every week is a new challenge. This weeks it’s horrible rectal pain and pencil thin stools. That’s after 2 weeks of feeling great. Before all of this cdiff non-sense I went through months of Lyme Disease treatments, which I don’t have. I am lucky, my wife and kids are amazing and supportive. Just want to be a healthy almost 40year old again.

lunasdad
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Joined: Tue Jul 16, 2019 7:15 pm

Re: Advice on Recovery

Postby lunasdad » Sun Sep 29, 2019 2:48 pm

So just an update...the last 2 days I’ve gone to toe bathroom small amounts 2 times a day. This morning I had watery D 1 time and that eat breakfast and lunch without urgency. I still feel washed out and fluids but pushing they it. Should I just wait it out?

beth22
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Re: Advice on Recovery

Postby beth22 » Sun Sep 29, 2019 10:00 pm

I would call your GI and ask him or her if it keeps up.

brandine
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Re: Advice on Recovery

Postby brandine » Sun Sep 29, 2019 10:17 pm

If no persistent, relentless D., I think you're okay... just in recovery. My doctor said only to treat if almost 3 days of persistent D. If you go into doctor, they will be likely to treat, however, as others have pointed out on this site, so you might want to wait it out if you're not going down hill fast, which it doesn't sound like you are if you're able to eat meals. I don't mean to go against a doctor's advice, and of course you should seek medical expertise, but doctors have been known to over-treat; I would simply ask, "Why would I treat if I'm not having persistent D.? OR Is it safe to wait and see if the symptoms subside/not worsen?" What you're experiencing sounds like normal recovery to me.
Last edited by brandine on Mon Sep 30, 2019 8:25 pm, edited 1 time in total.


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