C. difficile – Are your guts ever normal again?

Posted by sue6408 @sue6408, Jan 27, 2019

Does anyone know any body that has recovered from c.diff (guts back to pre-c.diff status ) . I have been negative for a year and still have bloating every time I eat anything and sporadic diarrhea. I need maternity clothing to eat and be comfortable. I have 0 appetite since I was initially infected.I am on creon 36,000 . this helps some what with bloating,I take papya&pineapple enzymes not helping, and floraster 2xday not sure about that.I have tried the FODMAP diet, I avoid many foods on that diet. I am seeing an RD, just finished an elimination diet with her. If I eat I bloat there for I am. Bottom line…are my guts ruined forever ?

I am new to this and normally do not post on things, but in October-December 2018, I was on 6 rounds of Clindamycin basically a month and a half of each other due to a root canal and a case of bronchitis. I’m usually not a sick person either nor do I get sick very easily. On December 15th, I had to go to the bathroom really bad. Severe intestinal cramping, nausea, loss of appetite, and horrible stomach pains. I had no idea what was going on and thought it was maybe a bug of something. A week went by and my boyfriend and I went to Chicago for Christmas. I started having diarrhea about two to three times a day with horrible intestinal cramping and nausea. My stomach was burning too. A week later, I got tested for C Diff and it came back negative. Found out they used an EIN test which doesn’t exactly get good results. Went in to the ER where they did a CT scan and bloodwork and it came back normal. A week and a half ago, I was progressively getting worse and worse to the fact I couldn’t leave my bed. I was so weak and tired, complete loss of appetite, nausea, burning stomach, intestinal cramping. Went to my Dr and she tested me for C Diff again where it came back positive. I had been on Vancomycin 125mg tablets every 4 hours for 10 days. I am now on a Critical Care probiotic that contains 80 billion CFU’s filled with Lactobacillus and Bifidobacteria. Today is my first day off my medicine and I am still tired, crampy, complete loss of appetite. I go to my GI Dr tomorrow. There are days like today where I just cry because I just want to be normal again. I am lucky to have found this site and see others stories. I am sorry for anyone going through this. I have lost 13lbs since December.

REPLY
@twentyse7en

I am new to this and normally do not post on things, but in October-December 2018, I was on 6 rounds of Clindamycin basically a month and a half of each other due to a root canal and a case of bronchitis. I’m usually not a sick person either nor do I get sick very easily. On December 15th, I had to go to the bathroom really bad. Severe intestinal cramping, nausea, loss of appetite, and horrible stomach pains. I had no idea what was going on and thought it was maybe a bug of something. A week went by and my boyfriend and I went to Chicago for Christmas. I started having diarrhea about two to three times a day with horrible intestinal cramping and nausea. My stomach was burning too. A week later, I got tested for C Diff and it came back negative. Found out they used an EIN test which doesn’t exactly get good results. Went in to the ER where they did a CT scan and bloodwork and it came back normal. A week and a half ago, I was progressively getting worse and worse to the fact I couldn’t leave my bed. I was so weak and tired, complete loss of appetite, nausea, burning stomach, intestinal cramping. Went to my Dr and she tested me for C Diff again where it came back positive. I had been on Vancomycin 125mg tablets every 4 hours for 10 days. I am now on a Critical Care probiotic that contains 80 billion CFU’s filled with Lactobacillus and Bifidobacteria. Today is my first day off my medicine and I am still tired, crampy, complete loss of appetite. I go to my GI Dr tomorrow. There are days like today where I just cry because I just want to be normal again. I am lucky to have found this site and see others stories. I am sorry for anyone going through this. I have lost 13lbs since December.

Jump to this post

@twentyse7en I also got Cdiff from taking Clindamycin. My heart goes out to you. I also had tests come back negative and then was retested almost a week after and it came back positive for my 4th bout. I then was prescribed Dificid (fidaxamicin). That was last October and so far, I've been okay. My GI put me on S. Boulardii. It's a probiotic that can survive the acid in your stomach and get to the GI tract. You might ask your GI about it when you go tomorrow. I sure hope the Vancomycin works for you. I took it for 10 days also and then relapsed and did the Vanco taper for 6 weeks. Then after the 4th bout, I finally found something (Dificid) that seems to have killed the Cdiff spores. Please keep us posted how you are doing. I know exactly what you're going through.

Liked by twentyse7en

REPLY
@pines

@twentyse7en I also got Cdiff from taking Clindamycin. My heart goes out to you. I also had tests come back negative and then was retested almost a week after and it came back positive for my 4th bout. I then was prescribed Dificid (fidaxamicin). That was last October and so far, I've been okay. My GI put me on S. Boulardii. It's a probiotic that can survive the acid in your stomach and get to the GI tract. You might ask your GI about it when you go tomorrow. I sure hope the Vancomycin works for you. I took it for 10 days also and then relapsed and did the Vanco taper for 6 weeks. Then after the 4th bout, I finally found something (Dificid) that seems to have killed the Cdiff spores. Please keep us posted how you are doing. I know exactly what you're going through.

Jump to this post

@pines I will definitely keep you posted. I am sorry to hear you also got it from Clindamycin and what you have been going through. I had never even really heard of C Diff before all of this happened. All I know is I don’t ever want it again and I wouldn’t wish it on anyone.

REPLY
@twentyse7en

@pines I will definitely keep you posted. I am sorry to hear you also got it from Clindamycin and what you have been going through. I had never even really heard of C Diff before all of this happened. All I know is I don’t ever want it again and I wouldn’t wish it on anyone.

Jump to this post

@twentyse7en I, too, took clindamycin for a tooth abscess and was diagnosed with cdiff in September. After 4 relapses and several rounds of vancomycin, I will be getting fmt in the near future. My family and friends and myself had never heard of cdiff before either. I think the pharmaceutical companies are keeping cdiff a secret.

REPLY
@ngorman25

@twentyse7en I, too, took clindamycin for a tooth abscess and was diagnosed with cdiff in September. After 4 relapses and several rounds of vancomycin, I will be getting fmt in the near future. My family and friends and myself had never heard of cdiff before either. I think the pharmaceutical companies are keeping cdiff a secret.

Jump to this post

@ngorman25 I am sorry you got it from Clindamycin as well. I believe the Dr’s should have clarified more on what C Diff was.

REPLY

I have been trying to reply & discuss Cdiff & a moderator told me he moved my post somewhat else. He said so I could interact with some other people. I can’t ever get back to it. I’ve responded to others in different Cdiff discussions. I don't know how to get to a discussion there I can get response. I’ve had 3 relapses of Cdiff from clindamycin so I could have good discussions. I just can’t ever get back to where I started since I was moved.

REPLY
@sandyabbey

I have been trying to reply & discuss Cdiff & a moderator told me he moved my post somewhat else. He said so I could interact with some other people. I can’t ever get back to it. I’ve responded to others in different Cdiff discussions. I don't know how to get to a discussion there I can get response. I’ve had 3 relapses of Cdiff from clindamycin so I could have good discussions. I just can’t ever get back to where I started since I was moved.

Jump to this post

Hi @sandyabbey, You're back in the c-difficile discussions now. Here are a couple of ways to find your way back to discussions you have participated in.

Option A: Browse topics in group
1. Go to the Digestive Health group https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/tab/discussions/
2. Browse through the topics to find c diff related discussions.

Option B: Use your profile
Your profile shows a history of all the posts you've made.
1. Go to your profile.
2. Scroll to "Posts"
3. Click on a discussion title.

Option C: Email notifications
When someone posts something new to a discussion you've participated in, you can choose to receive an email notification. Learn how to set your notification preferences and more here: https://connect.mayoclinic.org/get-started-on-connect/

If you need further assistance or have questions about navigating the site, feel free to contact me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

REPLY

I am in a similar situation. Had cdiff since September. Have Ben on vancomycin an flora stir for a while. Keep feeling like a kno in my side. Went to infectious disease doctor and she said my symptoms not cdiff had two ct scans told mild colitis. Put me on questran not helping. My stomach is hungry but I don’t want to eat because every morning I get up an have a minimum of 5 bowel move. I am tired and hungry all the time. I just want my life back no one gets it they look at me like no big deal. Bu cdiff USA life changing disease. Anyone have any does that have worked. Has anyone gotten better. I am withering away 24pounds so far😓😓😓

REPLY
@losthope

I am in a similar situation. Had cdiff since September. Have Ben on vancomycin an flora stir for a while. Keep feeling like a kno in my side. Went to infectious disease doctor and she said my symptoms not cdiff had two ct scans told mild colitis. Put me on questran not helping. My stomach is hungry but I don’t want to eat because every morning I get up an have a minimum of 5 bowel move. I am tired and hungry all the time. I just want my life back no one gets it they look at me like no big deal. Bu cdiff USA life changing disease. Anyone have any does that have worked. Has anyone gotten better. I am withering away 24pounds so far😓😓😓

Jump to this post

It sounds like you have ulcerative colitis, if you do you should ask your GI doctor to put you on Asacol 800 mg tablets, it's a great drug and it works for me. It is expensive but if you have a drug plan your GI doctor can write it so it will be affordable. If you don't have a drug plan then you can use Delzicol which is the same drug but at a lower strength. See which one will help you.
Don't be afraid to eat, obviously you must eat to be healthy. Colitis is a annoying disease but can be under control with the right medication and diet.
I also take fiber tablets,and don't eat spicy foods or a lot of dairy products , a little milk in cereal Is ok , but you must test the foods yourself to see what works best for you. I hope this will be helpful.

REPLY
@losthope

I am in a similar situation. Had cdiff since September. Have Ben on vancomycin an flora stir for a while. Keep feeling like a kno in my side. Went to infectious disease doctor and she said my symptoms not cdiff had two ct scans told mild colitis. Put me on questran not helping. My stomach is hungry but I don’t want to eat because every morning I get up an have a minimum of 5 bowel move. I am tired and hungry all the time. I just want my life back no one gets it they look at me like no big deal. Bu cdiff USA life changing disease. Anyone have any does that have worked. Has anyone gotten better. I am withering away 24pounds so far😓😓😓

Jump to this post

After your vanc treatment ,did you have a stool culture done to be sure the c.diff was gone ?

REPLY

Can’t have a test unless watery stools and it will come back positive anyway where’s I am colonized

REPLY
@sue6408

After your vanc treatment ,did you have a stool culture done to be sure the c.diff was gone ?

Jump to this post

Yes , it came back negative , Thank God.

REPLY
@gfpp

Yes , it came back negative , Thank God.

Jump to this post

Did you get a diagnosis of ulcerative colitis ?

Liked by 0687

REPLY

How many members in here was prescribed Dificid and what were your side effects and effectiveness with the 10 day supply?

REPLY
Please login or register to post a reply.