First Time Having C Diff

[DonnaT]

I read the registration info and hope I am posting correctly. I am a 70 year old female. I was very active and healthy until this summer when I was diagnosed with CD. I work 32 hours/4 days a week in an office because I like my job, enjoy working, and I want to work to keep my mind and body active.

I took Flagyl and Doxycycline for H Pylori in July.

On August 7, 2017, I was diagnosed with antibiotic-induced C Diff. I was started on Flagyl for treatment and couldn't tolerate that so after five days of Flagyl, on August 12, 2017, my primary care doctor changed that to Vancomycin 250 for 10 days. At the end of 10 days, I still had the CD symptoms so I went to a GI.

The GI said Dificid was the preferred treatment but since it would cost me $1250, he prescribed Vancomycin taper, 125 mg. (Four daily for 10 days, three daily for 10 days, two daily for 10 days and then two every other day for 10 days.) He also prescribed Florastor twice daily, told me no dairy, no caffeine and no roughage. I am now nearing the end of the Vanco taper, and will finish it on the 10th of October.

Yesterday I had six BM's but not watery diarrhea. My intestines feel diarrhea-like. I am feeling very discouraged because I feel as though I am getting worse instead of better. I was feeling better about mid-way in the treatment. I think I will call my GI today. Would anyone who has been on the taper comment as to how he/she felt nearing the end of the taper please. I just have no idea how I should feel since I've not been through this previously. Thanks so much!

[Lisa33]

Hi DonnaT - Welcome to the site, but so sorry that you are dealing with c-diff. I think you already read the first forum for new users, and yes, you are posting in the correct forum.

I was fortunate to not have had to do a taper, as I was cured after one relapse by a 14 day course of Vanco. There are many on this site who have done or are currently taking a vanco taper. I'm sure they will reply. I have read from posters numerous times that once they dropped their dosing, that symptoms returned. Sometimes it's temporary as your body adjusts, and other times their doctors brought their dosing back up for a period of time. Try to stay positive, as it sounds as if you are not experiencing full blown watery D. It could just be your body adjusting. I can tell you that almost nobody goes back to a normal state right away. Frequent bathroom visits are not uncommon, however they shouldn't be the profuse watery D. My suggestion would be to contact your doctor and tell him or her your concern. Maybe your dosing needs to be adjusted. Vanco tapers do work, so try not to be discouraged. It sounds like you have a good doctor as your treatment plan sounds spot on. The Florastor is also very beneficial in helping to restore your good gut bacteria. Since it's a yeast probiotic, the vanco will not kill it off either. Some also find Kefir to be beneficial. It's a probiotic drink.

I hope things start to improve for you soon. Hang in there and give your doc a call.
Lisa

[Machaon]

Hi DonnaT

Hopefully you will beat C-diff and get back to enjoying your job!

I'm 73 and I also could barely tolerate flagyl. Nasty, nasty stuff! I endured 14 long, awful days of flagyl and, in the end (so to speak), it didn't work!

I then went on 14 days of Vancomycin, 125mg. After I stopped the Vanco, I started getting ill again, so I called the doctor. He put me on another 14 days of Vancomycin, 125mg. After 10 days, I asked for another 14 days of Vanco because I wanted to do a tapering. I began the taper combined with 5 Jarrow Formulas Saccharomyces Boulardii + MOS, 5 Billion; === 2 Dr. Tobias Deep Immune; === 1 Dr. Tobias 30 Billion CFUs, 10 Strains Probiotics for Women and Men; === 1 NOW 25 Billion Probiotic-10; === 5000 iu vit d3.

I was fine through the weeks of tapering until I got down to only one vanco 125mg. I started feeling ill again. I refuse to wait until C-diff kicks in full strength, so I pleaded with the doctor for dificid and then started on dificid 200mg, twice a day. I Immediately felt better on the dificid. I've also read that dificid does well after a round of vancomycin. I continued taking the probiotics during the 10 days of dificid, and am still taking them, 22 days after the end of the dificid and feeling back to normal, with a normal appetite, energy and potty.

Saccharomyces Boulardii has been proven to be especially effective against C-diff, so, in my case, I'll probably continue taking it for a long, long time.

Best of luck! I hope that you beat C-diff on the vancomycin!

Regards, Bob

[amg]

Everyone is so different, and it's hard to say if your body is not responding optimally, or if it's just in recovery -- a lot of c diff patients have some gut issues for a while during recovery.

One thing that can help is to see if you have any of the other symptoms you had when you were in an active c diff situation. That can help distinguish recovery from continued c diff infection or c diff relapse. For ex, my daughter had temperature instability (mild chills and increased temps), puffy abdomen, pale face, and extreme fatigue with her relapses that she didn't have during recovery.

My daughter's experience was that of the 3 drugs - Flagyl, Vanco, and Dificid - Dificid was the one which made her feel closest to normal the quickest (within 2 doses) , and it ultimately cured her after 4 relapses with the other two drugs.

I wonder if your doctor didn't know that Merck has a coupon program for patients who are insured and eligible -- You can go to dificid.com and you will see if you can activate a coupon. Some patients only have to pay $50 with a coupon for dificid.

[Zapper]

I failed a vanco taper 2 times. Both times it was very similar to what you explain of the multiple bms a day/no diarrhea but the feeling it was going to happen. Talk with your GI about it. If the symptoms continue you could always retest for peace of mind.... praying you feel better soon!

[DonnaT]

Hi everyone. I wanted to update my progress. I completed the Vanco taper on October 10, but it seems so much longer. Since that time I have had some stomach discomfort most days, some days I have several BM's but some days I only have one or maybe two. No watery D though. I am continuing the Florastor as prescribed by my GI. I called my GI's office and asked the nurse if this is normal or if I should be concerned and she told me to call back if I have severe stomach pain or watery diarrhea.

I am continuing the no dairy except for a small slice of cheese once in a while. I am also continuing the no caffeine except maybe a glass of sweet tea on occasion. I am eating mostly veggies (no roughage though) and soft foods. I eat an egg fried in olive oil, a piece of dry toast and drink eight ounces of OJ every morning. It is difficult to try to eat foods for proper nutrition in this situation.

I just don't know what to expect at this point and it makes me a little anxious. I hope I am in recovery and will not relapse but I just don't know. In March we scheduled a vacation for November 25th. That includes a flight as well as seven nights in a hotel. I am concerned about the trip. I really want to go, as I need to get away, but I wonder if it is the right thing to do and how my gut will be by then.

Thanks for listening!

[Lisa33]

This is the hardest part - right after you finish meds. Your gut is like a rollercoaster ride. Some days you may feel like you are relapsing and other days are better. In early recovery, BMs can be all over the place. Several BMs a day is not uncommon, especially in the morning hours. It is normal to not be able to eat many foods yet and want to stick to a bland diet. Loss of appetite is also common. It's time to watch, wait and see what happens. If you aren't having watery D with the urgency to go, that is a good sign. It sounds as if you are doing everything right. I know you must be very anxious about going away. That is a choice that only you can make. If you are feeling up to it, don't let your anxiety stop you from going. You will have more bad days than good days still, but with time, things will improve. Hopefully, you are in recovery and c-diff is gone for good!

[roy]

Some of the mods take a c.diff first aid kit if the go on vacation.
Spare underware, wipes, box of vanco pills!

[Ril]

Lisa is right on target. I had a very rough recovery. I had a lot of food intolerances for a very long time so had to be careful with diet. I would not use olive oil. Oil made things slide through me. I used Pam spray and maybe a bit of light margarine with it if needed. I could eat pasta and rice, baked potatoes, roasted poultry and fish, pb&j, avocado, chicken soup etc. Try several small meals rather than largermeals so you can get more nutrition. It can take quite a while. Try not to get too anxious and hopefully you’ll feel well enough to go away. If not, you will have to decide your own comfort level.

Rita

[DonnaT]

I thought I would post an update. It has been five weeks and five days since I finished the vancomycin taper. BM’s are very irregular. Anything from none one day to three the next day. Even had D-like one day this week. Stomach hurts sometimes but not all the time. Still tired but returned to work (which is four days a week) about a month ago. I get tired but I prefer to work to try to keep my mind off this. I am eating different foods but I think I am going to go back to bland for a while. Sometimes I get scared. I have continued the Florastor two per day but think I am going to switch to Align which is one a day. Align caps are smaller and easier for me to swallow. I have always had problems swallowing pills and capsules.

We are scheduled to fly on the 25th and I must admit I am a little concerned about that because our flight leaves at 5:35 AM and arrives at 7:40 AM and most of my BM’s happen in the morning. I don’t want to have to go to the bathroom on the plane. Especially since, when I have the urge I still feel like I need to go to the bathroom right away.

I am trying to stay positive. Thanks everyone for the encouragement and information here.

Donna

[Lisa33]

Hi Donna - Thanks for the update. Still sounds like a normal recovery to me. I always had my BMs in the morning as well. Try not to worry about flying. Maybe try to use the bathroom before you board. It's a short flight, so maybe if you read a book or watch a show, it will take your mind off of things. 5 weeks and five days is heading in the right direction for sure. I think you are going to be just fine. Stay positive and wishing you continued improvement over the coming weeks!

Lisa