Why and how!?!

[sevla]

Hi everyone,
I hate roller coasters but this illness is the worst ride one could have wished for. It is a roller coaster of emotions, symptoms and feelings. I am on day two off Dificid. I really had high hopes that this time it would work for me (after Flagyl and Vanco did not help). I felt good while taking Dificid, stools were sort of formed, normal colour and no pain (just gas).

Today..just on day two off Dificid I feel so weird and am having a bad day.. I already went 5 times to the bathroom. No D, but one time there was what looked like a little piece of tissue with blood and the next time was just a little piece of mucus. My stomach is also making weird noises. I am so beyond frustrated. How can I feel so different in less than two days off Dificid!?!?

I feel like crying and screaming. I feel like I want to fall asleep, wake up and realize all of this was just a bad dream. I want to get off this crazy ride and go back to normal...

Is this normal? It does not sound like IBS to me.. I started VSL#3 yesterday..could it be part of and my gut is not taking it well? Or is this just the nasty c diff showing me that it's still very much back and laughing at me....

[beth22]

Probiotics do cause upset for some people. I can't take them much at all. You could try and skip the VSL#3 for a day or two and see if things improve. I also found that once I was off meds, there were a lot of foods that I did not tolerate anymore. Dairy products, fruit, vegetables. I would eat a bland diet for a couple of days too.

[susant]

I could not tolerate vsl3. I had watery d until I stopped it. I don't know if that's what's causing your problems but it was definitely not good for me. I can't seem to find any probiotics that don't upset my stomach.

[Bobbie]

Sevia, a roller coaster ride is a great description of C diff. Emotions and pain up and then down and then up again within a couple of hours. People cannot understand how you can be fine in the morning and then horribly sick in the afternoon.

[getwellsoon]

Dificid itself made me feel worse while on it and afterwards but it was the one med after over a year of Vanco, xifaxan etc that cured me finally. I still felt ill for months but not like CDiff ill. I hope you can finish the course and see how you feel after a few weeks or months. Now, after 4 yrs. I'm just about normal. Took me so long but I got there. Dificid can be hard on some and some have no side effects. Try to hang in there, it might be the one thing that finally cures you. Good luck and I will pray for you.

[sevla]

Thanks a lot everyone! Today I went twice already but no D, M or B. Just soft/mushy stools (tmi).
I will try take a little less of VSL#3 and soace it out from the other probiotics I am taking (Florastor and Culturelle).
It is a crazy roller coaster! Physically and emotionally! The hardest part for all of us, besides trying to get rid of this, is the long recovery that most seem to have. It's a mind and body game.

I hope everyone feel better today!

[Jackie25]

I agree sevla- not only is dealing with active c diff hard and stressful, but I actually think that the first month in recovery is even worse to be honest. I felt like during this time my gut and BMs were all over the place. I constantly was worried that I was relapsing with any and every symptom I may have had. Be it big or small! It was difficult and made me feel very anxious and stressed, but you will get through it. It definately just takes time to allow yourself to get back to any realm of normalcy. But it does get there :)

I remember that during my recovery I had to cut down a little on all the probiotics I had grown accustomed to taking while treating c diff with vancomycin. Once the meds were out of my system I realized I was taking a tad too much, causing loose BMs, some gas, and even minor cramping occasionally.

I hope you start feeling better and continue to make progress in your healing :)

[justme]

After 2 years, I still have trouble with probiotics and am trying to introduce them again s-l-o-w-l-y. I take shot glass of Kefir one day, 1 tsp of yogurt the next, 1/2 a capsule of another probiotic another day. I figure if I get a little bit in me it's better than nothing. Prebiotics are easier to tolerate for me. It seems to be an individual thing, because some people have no problems at all with probiotics. Also, reactions can be different. I don't get D, but get bad gas cramps and an increase in BMS which irritate the colon too. I had no trouble with them during active C. Diff or early recovery, but the further I got into recovery, the more my body reacted. From what I read on this site, everyone seems to react differently. C. Diff is a roller-coaster (good description). It can really be an up and down journey and the ride has lots of bumps along the way. The healing process seems to be different for everyone. Try easing off the amount of probiotics you are taking and introduce them one at a time and see what specifically you may be reacting too. Good luck.
Anne.

[sevla]

Thank you so much, Anne and Jackie. It's reassuring to know that some of these things are just part if the healing process.
I try no to worry too much, but it's there in my mind all day long. I just went out with friends for a small gathering and I was so anxious at all times. I realized that I developed high anxiety due to c diff. I have been stuck at home for weeks now and going out makes me super anxious - these are the times I wish I could drink a nicr cold beer!

[kwiatek7]

Hi Sevla,

I am so sorry to hear what you’re going through this but you’re not alone. I think I could be either the probiotic or the antibiotics that is causing you side effects (being on a BRAT diet while taking the antibiotics helps). I find that it takes time for the body to register what you’re taking. It gets better with time so just hang in there. I been on antibiotics 3 times and have been C-Diff free for 7 months and it’s still a battle as I have a lot of issues (anxiety is one; you will have better days just need to stay busy as this helps). You will see improvements with time; patience is key which I don’t have much off and I thought I did and I bet most of us feel the same way.

Wish you a fast recovery!

Agnes

[sevla]

Thanks Agnes - sorry for just replying now. It has been a crazy roller coaster day after day.

Quick update: day 18 off Dificid. Today is another bad day - already went 6 times! No watery D..but the last one was small pieces and M..and a familiar smell.. Moreover, I just feel exhausted today. I had 4 glasss of Kefir yesterday, so I am wondering of that played a role... I just am tired of analysing my poop and worryinf about it all the time. Every time I go to thr bathroom, as I walk towards it, it feels like I am going to the torture chamber.

The same way as the physical is a roller coaster so is the emotional. On a good day I go through my day being more optimistic and positive (even if afraid of small cuts, and anything really). But on an off day, I just put my hand in the sand and throw a pitty party.. I am not fun to be around on those days as I just feel sorry for myself. How crazy, right!? I start feeling bad for my spouse, step kids, and even pets! They do not have my old self..just a shadow of myself walking around full of fear and anxiety. I am supposed to go to the beach in two weeks (for 3 days), and am already fearing it badly. This is really no way to live - I do not cope well with what I am becoming (black and white from what I was before c diff monster stroke).

Sorry for the rant everyone - I know that all this is just part of this illness - but I hope there would be an easy way to control the emotions amd brain more.

[Lisa33]

Sevla - I found that the first 2 months in recovery were the hardest. The beginning of recovery is definitely a roller coaster ride. I remember dreading waking up in the morning because my mornings were the worst. You will see that the bad days start to become further apart, and there will be more good days soon. Try not to obsess on the BM's. You need to go away to the beach and enjoy yourself. I know it's easier said than done. Once you get your energy back, you will also feel like you can handle the roller coaster BM's better too. Concentrate on boosting up your immune system and overall health. You will get there! 18 days is awesome! You are on your way!

Lisa

[sevla]

Thanks a lot, Lisa! The words of encouragement are definitely helpful!!
I am also hoping for those bad days to be further appart. What I read matches what you are saying - that first 2 months are rhe hardest (those famous 8 weeks until you are considering "cured"). Every day goes by so slow though!! I will be happy to reach day 21 c diff free (as per according to my GI chances ir relapse decrease after day 21..), but I do look forward to reaching the two month mark!.. Have to take one day at a time..and yes, trying to boost immune system. That's definitely critical. Thanks again!!!

[beth22]

Kefir can cause frequency and loose stools, especially in larger quantities. Try cutting back a little and see if it makes a difference. You may have to find the right amount that works for you without giving GI symptoms.

[sevla]

Thanks, Beth. I will definitely do that. I just went again.. just a small M amount... So frustrating! I am trying not to panick though...