How do you know when it's over?

[trob25]

Hi all, I thankfully found this forum last week and have been reading with both hope and despair. I'm a 25 year-old male (26 tomorrow).

Anyway, I developed C-diff exactly 1 month ago today. I was taking enablex for frequent urination, which believe it or not causes constipation, when this started. However, my doctor thinks I may have developed C-Diff while taking Cipro for a month in May for the same condition. (I developed Prostatitis last year while fighting Lyme disease FYI).

Anyway, I was diagnosed with C-diff about 4 days after it started, I went on Flagyl immediately, 10 days, 3x a day, 500mg. By the end, I hadn't resumed normal bm's, so I was immediately retested and tested positive again. I went on Flagyl a second time, same dose, and by the end, which was Wednesday this week, things were becoming solid again and more normal looking and I was feeling great, eating pretty much anything I wanted. Currently I have no abdominal pain or bleeding, just noisy intestines and questionable BMs.

Anyway, I'm 48 hours off Flagyl, and things are still more solid, but not normal like before. What I was hoping was that some people here might know if I should be expecting "normal" immediately, or if this is something that takes time? How do I know if it's back? The horrific smell is gone, but it's been replaced by a sweet/odd smell, not sure if that is good or bad? Does the intestine noise continue for a while?

I also went to a GI last Friday, who was less interested in my current symptoms and more interested in my past Lyme disease. He thinks the symptoms (joint pain and night sweats) sounded like Chrones, but those are the side effects of Lyme, I've had it before! He didn't answer any of my questions and was dismissive of my concerns over Flagyl side effects, stating that 80% of people get better after one dose, and rarely does he see anyone with C-diff after two doses. He wanted to do a colonoscopy, but I have not scheduled it yet as I question the wisdom of chugging laxative while I'm hopefully just recovering. I may need a new GI if I do not recover.

Also, I'm taking 6 acidopholus a day, 3 billion live cultures I think, and drinking danactive.

Thanks, I'm sorry this was long, but as you might see, I'm a bit terrified.

[trob25]

Oh and also, I'm down to going once or twice per day.

[Nancy1]

trob25,
Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

Happy birthday, and I hope this is the end of cdiff for you. As your doc says, about 80% of people recover after 1-2 rounds of Flagyl or vanco. Your age is in your favor. Most folks here are in the unlucky 20%, so don't despair. FYI, I got cdiff after taking 1 Cipro and 4 levaquin pills.

It can take a long time to get back to normal after cdiff, months or even years. Even then, it can be a "new normal." On the flip side, you can relapse for some time afterwards. I've heard 70 days and even 90 days, before you can consider yourself recovered. And then you always need to be careful about taking antibiotics, because they can trigger cdiff again.

Most of us know if we are relapsing because of having lots of D. Our symptoms can be variable, though. When I had a lot of noise, it often meant that I was about to relapse, but this is not true of everyone. Some folks have the cdiff smell and others don't; I had it. I always had blood with relapses, while many people don't. Good luck. Let us know how it goes.

[trob25]

Thank you for the response Nancy, it's so comforting to know that someone is listening out there and understands what this is like!

My nerves are racked right now about the loose stool, but I'm just going to wait and see how it goes over this weekend as it may just be something that's happening in the process of getting better. You mentioned that age is in my favor, is it easier to recover from this when you are young?

Thanks again

[Nancy1]

Yes, younger folks tend to recover faster from cdiff than us older ones. Babies and children generally recover even faster than adults.

See the Three-Day Rule in the FAQ section if you are nervous. Basically it says that if you keep having D for 3 days, or if it gets worse, call your doc. Hang in there. You're not alone.

[feelinghopeful]

C-Diff and recovering from it are different for everybody. Given the experience with the doctor you wrote about, the one thing I care to add is, do not be afraid to be your own advocate. If you feel your doctor isn't paying attention to what you're saying and feeling, either change doctors or be very direct in a nice way - alienating a doctor is never good. You never know when you'll need him/her. Anyway, I've seen too many people intimidated by their doctors. You know your own body. But also, don't overreact to things. It appears you don't have a bad strain or you wouldn't be here typing so calmly. You will get better if you're not almost there now. I'm sorry you've had these health complications so early in life.

The change in smell is probably from the change in intestinal flora. My scent has changed so many times I don't even remember the original.

No matter what, you always have the support and experience of people here. Do not panic.

[trob25]

Thanks for the reply and that is good advice. I sort of felt like I was bullied around by this doc, it's the first time this has ever happened. All my past doctors always had a give and take with me, this guy was trying to make me believe things that aren't even true! For example, I've had lyme twice, and he told me you can never get it again if you get it once. Which is wrong as I've been to Lyme specialists who said I can get it 100 times again, there is no natural resistance. If I go back to him I will be more assertive, but I really think I may change to a different GI after the way he behaved.

Anyway, today things seem to be getting back on track, i.e., more solid and not "normal" but improved. From reading I'm starting to understand how everyone experiences this differently and I think I'm going to just monitor how I do for at least a week before I get upset and think I'm having a relapse.

Thank you again everyone reading and commenting. I thought Lyme was scary last year and a heart problem I had in the past, but this has by far topped both of those things, I think it was the massive weight loss at the beginning.

[HennyPenny68]

I, too, have had a similar experience in symptoms after I've finished being treated for c diff. Usually a few days after my last dose I start having a lot more noise, gas, and even some diarrhea but if I wait it out a couple days, things seem to return to more normal solid looking stools. Currently, I'm 10 days after my last dose of vanco for c diff. I'm still not totally normal but things seem to be going in the right direction except for at night I still seem to have pain in the abdomen. This is my 3rd bout of c diff because I had to take an antibiotic for a bad upper respiratory infection so like everyone is telling you, stay away from antibiotics as long as you can!

[trob25]

I'm going to try and stay away from them as long as possible! I'm definitely learning to relax, as long as things aren't getting significantly worse. Every noise, grumble, pain or bout of gas causes me a mild bit of stress now, but so far I think things are holding up relatively well.