Four Days off Dificid - Panicking a Bit

[NikaNik]

Mornin', all!

I hope everyone is well. Little background: One hallmark of c diff for me was passing a lot of gas with the D - but I never really had watery D, it was mainly small, floaty pieces. I relapsed 3-4 days off Flagyl with lots of gassy D, vomiting, racing heart. Felt horrible. Moved to Vanco. Four days off, I had D and very gassy/floaty piece type stools about four or five times in 6-7 hours and not much appetite, but no vomiting, didn't feel that bad otherwise. We had a major snowstorm and I couldn't get tested. I called my doc who told me to start the Vanco again. So I'm not sure if it was a real relapse, but he didn't want to wait. It helped, and 8 days later my specialist moved me to the Dificid.

I was feeling great after treatment. Normal BMs 1-3 times a day. Yesterday I only went once. Now, on day four, I went twice and the second was a very gassy loose stool (mostly unformed pile of mush), followed by a few formed pieces. Just went again and lots of gas with floaty pieces. I'm so upset I can hardly eat.

Does the very gassy stool/pile of mush/floaty pieces mean the c diff is fighting its way back? Since that's what precipitated the D after Vanco on day four I'm kind of freaking out. Is it too early to test?

I am trying to keep myself together at work (been fortunate to work mostly this whole time) and am also a wedding photographer shooting a wedding this weekend. Man, I hate c diff so much!

Nikki

[NanciT]

Nikki

The first few days after stopping the medication for me were full of fear...even now 6 months later I have days where I fear it has come back! This is such a difficult illness as so many of us know to battle, and it is really a battle not just physically but also emotionally.

I wish I could offer some great advice but it will be a matter of time. There are no short cuts, we just have to work through it. There is the 3 days rule we all look to follow and try not to panic before then. Easy for me to say, very difficult for you at the start of the NO medication period.

The fear is terrible but you have an excellent doctor and have been on a good taper dose of Dificid, many people here have done well on Dificid including me but it did leave me with IBS which is something that got worse for me once I stopped the medication.

I hope you feel better soon!!

[NikaNik]

Thank you for the support, Nanci! I'm following the three day rule and no D so that's encouraging. Took some Gas-X and trying to keep distracted. This thing can make anyone crazy...and I was already halfway there. ; )

[Bobbie]

NikaNik,
C diff not easy on anyone's nerves - except someone who is either stupid or unconscious. Just hang on and go from day to day. Nancy is right. Try to exercise - it won't cure C diff but it will keep you busy and help you physically and mentally. I've been in Jazzercise 25 years. It's kept me sane and fit - for my age. I've had IBS after every treatment - including FMT.

[getwellsoon]

Don't panic, it will just make you feel worse. I had colitis and IBS post CDiff and it can feel just like you are still sick. I still never felt as bad as that initial case when I was hospitalized, I truly thought I would die from the heart symptoms, dehydration etc. etc. I am 4 yrs out and I still panic if my bowels get a little off. I had an incident yesterday and was on high alert. Today feel ok but not 100%. Pre Cdiff we wouldn't have even given this blip a thought. Try to eat light, take some Pepto if the /dr. says ok and relax. Coming off the meds and the first few months are the worst. You will get well. Just to get off the med is a big milestone. Hang in there and if you get overwhelmed just post and we will talk you down. We know exactly how you feel and what you are going through as no one else,not even your spouse, loved ones can because they haven't had it. I bet today is better and tomorrow back to normal. Let us know and I am praying for you.

[NikaNik]

Thank you, ladies! You are all so wonderful!

I came home early from work yesterday because of the anxiety (I take the bus in and it's a two-hour commute each way - thank God my bosses are understanding!). Fortunately, my energy is very good (keeping active helps like you said, Bobbie!).

A friend invited us out to dinner (one of our favorite pizza places) and I went but just had bread and water. Went once at the restaurant and it was more normal. Went twice this morning and both times it was a bunch of small pieces in a pile? Has that happened to anyone?

I am working from home today to try to relax and get more calories in me (when should I expect my appetite back?).

Thanks again, all!

Nikki

[getwellsoon]

Yes, all those things happened to me. Stools will be all over the place. As long as you aren't having outright watery D don't worry. Try not to look in the bowl, it will only make you nuts. Very good sign that your energy is up, that is a lot of the battle. If anxiety is bad let the Dr. know. You could take something but just for a few weeks to calm you down. They are only meant for short courses. Hope today you can relax and feel better. Your appetite will come back, don't worry. some on here have taken something called r. reuteri or something like that. Said it helped them. I knnow I spelled that wrong so try to google it. Think its an herb or vitamin. It is supposed to help with appetite. Ask Dr. first though. Wish I could give you 20 of my excess weight. I got my appetite back finally and then some lol.

[NikaNik]

I've read good things on here about the reuteri! One more question - I still feel like I smell a hint of the barnyard type odor when I look at the TP after wiping (I know I should stop that!). I never had the odor super strongly but does that mean it's still there? That freaks me out. :/

[getwellsoon]

Odor doesn't necessarily mean anything. I never had a horrible odor with my CDiff and I had a horrible case. It just depends so don't worry about this. Hope you are feeling better today.

[NikaNik]

Thanks, all. Went 3 times this morning - one small pieces and last two flaky unformed piles. Sort of freaking out because I also have some pelvic cramping which I had when I was first diagnosed but that could just be a coincidence with my cycle. Of course now I'm nervous and feel like I could go again. No appetite. We are meeting with clients in a couple hours to hopefully book their wedding and are shooting a wedding all day tomorrow so I am praying to God this is just healing. I LOVE my jobs and want to put c diff behind me! Never prayed or cried so much in my life. Tomorrow will be 7 days. Is that too early to drop off a test?

[Misscshell24]

Personally, I think that is too soon to drop off a test. See general forum- should I test for cure? and latest info on testing and relapse. I'd give it more time for you to heal, of course unless your symptoms persist or worsen. In my experience, it took a while after being off meds for my body to adjust and start to feel better. Good luck with the meeting and hope you feel better and have a good day.

[NikaNik]

Thanks, Misscshell! I'll check that forum out again. I thought it may have said 7-14 days. I'm holding my own. The meeting went great. Off to do a first birthday shoot (love those!). Feels like I have to go but I think I am thinking about it too much. I haven't had any D but the piles those couple of times freaked me out (easy to do!). Staying distracted and knowing where bathrooms are is keeping me sane. You are all so great! Thanks again! : )

[getwellsoon]

Did you ever ask about the Metamucil? Also cholestymol is a script med that firms up the stool. Both will help. Ask your Doc. As long as you don't have watery D and feel very ill you are probably healing. Try to stay calm, it never helps to panic. You will be fine. I had those mushy stools for months. Its scary but means you are healing. Think glass half full. Good luck.

[Bobbie]

Michelle is right . 7 to 10 days. Too soon,

Rule number1 of c diff - always know where the bathroom is in any building you enter.

Enjoy the photo shoot. You are back out there doing what you love. As Carol said, ignore the little blimps in the road and try what she suggested.

[NikaNik]

Thanks, ladies! The shoot went great (the little boy was so delicious I could've eaten him right up!). Today we are off to shoot a wedding (my cousin's, so it's extra special). Woke up nervous to use the bathroom (what else is new? lol) and it was a few small pieces, with the flaky/oddly formed pile thing going on again like yesterday. I think I would feel better if I had a normal-looking BM, but as long as it's not watery D I shouldn't panic, right? I was diagnosed without watery D (it was small fluffy pieces - sorry for the TMI but just so you can see how it's hard for me to figure out things). Someone tell me you can have these small, formed/oddly formed pieces for a bit... Appetite is still not so great thanks to my anxiety but I'm force-feeding so I don't get the title of Miss Skeletor 2015. : )