Started Dificid/Freaking a little

[NikaNik]

Happy Saturday, all! I started Dificid yesterday at 4 pm (about 6 hours after taking my last Vanco as per my doc's instructions).

On Vanco I had 1-3 BMs a day, well formed. Some mucus. But I woke up this morning having to go asap. It wasn't D, but came out fast and was in a pile when I looked. An hour later had to go again - came out fast and burned a little. No D but it was small pieces at the bottom of the bowl. When I wipe there are bits of brown/orange on the TP (Doc says mucus but I worry it's my intestinal lining breaking down or something?).

Anyway I'm freaking out that this will turn into uncontrollable D and nothing will stop it and I'll die. Yep - good ol' anxiety taking over the brain this morning! I know you all can't give medical advice, but has anyone panicked about something similar? Could it be my body adjusting to the medication? Thank you all SO much.

[seekingcure]

Trust me, you are not alone. We have ALL panicked over something like this at one time or another. What you are having does sound like mucus. I have never taken Dificid before so I can't say whether looser stools are more common with it. I had looser stools on the Vanco. Another moderator (Carol) did take Dificid and said it was a hard medication to take and she did not feel better until she had been off it a long time. You have been on a lot of medication for c-diff recently and the more antibiotics you take, regardless of what kind, the more good bacteria is killed. Anytime your good bacteria is compromised, diarrhea is common. The people who die from c-diff are typically the ones who are not diagnosed and treated properly, are usually older and/or have other underlying medical conditions. You are being treated and are on top of things, so it would be very, very unlikely for things to go so wrong. If things continue or go downhill, of course, contact your doctor. Hang in there.

[NikaNik]

Thank you so much, Bea! I've been reading more posts on here and see how common these thoughts are. I've been hangin' tough since those two times this morning. Appetite is okay (always unsure of what to eat lately!). I think I panicked because I read Catherine Duff's story and how she had to have multiple surgeries on her colon, which brought me to links of other stories of folks having colectomies and/or dying (ended up having bad dreams last night too). Rationally, I know they are the minority but I feel so awful for all they've gone through and think, oh man could it happen to me, too, which sets off the mental fun! I've struggled with anxiety disorder since I was a teen and boy, is this a fun illness to have along with it lol! Hope you have a wonderful weekend and thanks again for replying. -Nikki

[getwellsoon]

Yes, Bea is right, I had a lot of symptoms with Dificid. I had D at first also and panicked. I had mushy stools and felt awful while I was on it. My Dr. added Vanco in. I finished both and finally after a few months began to feel better. I was a hard case, had taken Vanco for over a year for relapse after relapse. Had tapered Vanco twice. I give the win to the Dificid. Hang in there, you will get better. Don't know if you are taking probiotics or kefir or florastor but all these things help. I think they are recommending taking Florastor with Dificid but do ask your Dr. about this. I had 3 yrs. of healing to go through because I probably had no gut flora left after all the meds. The real healing will begin when you are off of them. You will get well, try not to let your mind go to those dark places. Don't google worst cases etc. it will drive you nuts. My husband had to ban me from the internet, I made myself sicker and in a panic mode after reading all the horror stories. Let the Dificid do its work and treat any symptoms you have, like nausea etc. I had promethazine and advil, they really helped me. Hope you feel better soon and hang in there. We are here for you. We know how terrifying this disease can be. You will be fine. A cure is around the corner, I firmly believe it. Let us know how you do.

[NikaNik]

Hi, Carol! Thanks so much for the reassuring words. My dear hubby has about banned me from the internet too, ha! One of my good friends is a nurse and she texts me often, "Stop Googling!" I know, I know! So hard to tell an anxious mind that.

As for the probiotics, I take Florastor twice a day (once in the morning, once at night). I started that after I relapsed the first time. I also drink a small glass of Kefir daily (8 oz, sometimes split into half in the morning, half at night). I have an Innate brand refrigerated probiotic that I'm now taking once every other day at night (20 billion cultures) because I was afraid I was overdoing the probiotics. I also take liquid vitamin D3 and a daily multi-vitamin (been on both of those for years off and on - when I remembered to take them).

Were you able to eat what you wanted while on the Dificid? I know dairy is a no-no so I've been avoiding it the best I can (I cheat with a little parmesan on plain noodles here and there). Before c. diff I LOVED food. I got so excited to go to work just to try all the different cuisines (I work in downtown NYC). That part of it has been rough. I dream of eating everything and anything one again one day without fear of this thing!

[getwellsoon]

No, I couldn't tolerate dairy and sweets also upset things. I mostly stuck to carbs and soups. Could tolerate bananas and the BRAT diet also meat seemed to be ok for me. Everyone is different. My lactose intolerance has gotten much better but I still can't overdo it. Its a small world, I grew up in Manhattan and my Mom still lives there in Yorkville. I don't get up there much anymore. If I go my Mom comes to my brothers house in Jersey and we visit there. I mostly just take her home and don't get to walk around my beloved Yorkville for many years now. You will get there and be able to eat your favorite foods again. Most people do. Try not to worry and stay off Google. It will only make it worse.

[NikaNik]

Thanks again, Carol! So far I'm tolerating quite a bit (gluten-free waffles, Kefir, oatmeal, bananas, mini quiche appetizers, rice pilaf and breaded chicken, some mini muffins as a snack, Boost). Still haven't put back on the weight I've lost but in trying. I miss Mexian and pizza - and ice cream.

Small world, indeed! I live in Jersey (long commute to work!) and love it. Yorkville is a cool area although I haven't been up that way in some time.

[getwellsoon]

You will get there. I can eat pizza again and do not have too many things I can't eat. Unfortunately I gained all my weight back and then some. Now I'm too fat and have to lose. Its still better than having CDiff and no appetite and losing 25 lbs. in a month. My brother lives in Parlin, if you know where that is in NJ. He also commutes everyday to Manhattan to work. He is there for my mom, who lives on 89th st. on the east side. She is in DeWitt Rehab right now to try to strengthen her so she can stay in her apt. She has to go up 2 flts. of stairs and its just getting too much for her. She slid down on the top step while my brother was helping her up. She has been having trouble for a while now so my worry is through the roof. Thank God my brother is there for her. She will probably go live with him if she can't go back to her apt. but I know she doesn't want to do that. She refuses to move to Va. with me. Can't blame her, she has lived in NYC her whole life. Anyway, I went off topic, sorry. You will get to where you can eat your favorite things again,most all people do. Just enjoy what you can for now and never overdo the goodies. Hope today is a good day.

[NanciT]

I have had difficulty eating through out this C Diff journey, I also stuck to the BRAT diet for months. Now I am 5 months post C Diff and slowly starting to add foods but but still have days with little appetite and some nausea. I ended up with IBS after all this medication but I do have GOOD days now when I feel WELL!

The food issue has been slow for me, others have done much better. I have had NO issues with dairy and have been having ice cream...with no problems.

It just takes time. The worst is the PIZZA commercials at night...my poor husband has to sit and listen to me talk about food when I see it on TV its the worse, then we have chicken soup for dinner! One of these days I am going to order that pizza!

[Bobbie]

See CDI - Nutrition re diet. Main no no's are dairy products - possible exception yogurt - and excess sugar. Everyone is individual - what bothers one, someone one else can tolerate.

You might make a food diary to help find out the main offenders.

After two years of this, I was sick of it. I do the "everything in moderation, nothing to excess" method. Still have good days, bad days but ignore.

Probiotics help some - don't do much for others. Information about o them is in several forums. Do a search in the search box at the right hand top of the index page.

[NikaNik]

Thanks, Bobbie! I'm trying to eat whatever I can, whenever I can (with the exception of diary and lots of sugar) so I can put some weight back on. I was tiny as it was and don't want to lose anymore. I've been poking around the site for a couple hours - thank you for all you do and how selflessly you give of your time even when (especially when!) you're not feeling so well yourself. I had a bad morning (depression...thinking what if NOTHING works and I have this forever - good times!) and knowing I'm not alone and that people do recover makes me feel so much more hopeful. : )

[teresajo103]

Nik

I took difficid for 10 days....I did good on it. I did have pretty loose stools though. I finished the 10 days and then relapsed after 3 weeks. I then went back on vanco for nearly 8 weeks with a taper/pulse...then I had a fmt done on Feb. 17th. I still have some off days....but I am getting better and you will too. I recently started working again and I am walking with my grand daughter everyday. I plan to start swimming but I have to wait for my swim suit to come in because I have lost 61 pounds and my old one is just way too big. Exercise was one of the greatest bits of advice (I have gotten lots of good advice) but it makes me feel stronger and it makes me less paranoid. Well, I still panic sometimes but I talk to one or sometimes several of the vets and I get over it. These are some really good people and most have been thru just about everything you can think of. If you are really sick...no doubt call your doctor....otherwise most the time you can wait it out and you will be okay.

[NikaNik]

Thank you, Teresajo! That's really encouraging. I hope you have lots of fun with your granddaughter this summer. : ) I agree with the exercise. I have about a mile walk from the bus station to my office downtown and then I try to get out for a walk in the afternoon. The people here are fantastic and I really appreciate it! Thanks again.

[Bobbie]

Exercise saved my sanity - that and a heating pad for those painful days.

[Cindyk]

In regards to deficid I am freaking because after 7 days I'm still cramping on left side and had a low fever with flu symptoms but after taking hydrocodone it went away. Now I'm clammy. Should I be worrying , it's the weekend and no one I can call.