C. difficile -are your guts ever normal again ?

Posted by sue6408 @sue6408, Sun, Jan 27 12:57pm

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 ?

@ngorman25

@nettecook How long ago did you get the fmt? Has it been successful? I haven't started the prep yet today and I already feel nauseous! Trying to calm myself down. I will definitely post here as soon as I can. Thank you for your support!

Jump to this post

@ngorman25
I had the FMT on Feb. 28. Two weeks later I had a horrible day of constant diarrhea. Then it cleared up and I’ve had more trouble with Constipation. Then I will have a day here and there of diarrhea. I’m wondering if I’m experiencing IBS again. I see my doc next week so we’ll see. I don’t feel good. However, I have a friend who seriously almost died after gallbladder surgery and getting CDiff and the FMT saved her life and she hasn’t had trouble since! I’m
Probably not a great person to judge FMT success because I have underlying issues like Crohn’s Disease, IBS, and RA. I’m on immunosuppressive drugs as well. I really hope this is exactly what you need!!!!

REPLY
@ngorman25

@pines Exactly! I have been saying the same thing for months! What I don't understand is how everyone has heard of mrsa, but cdiff is a big secret and I totally believe it's because so many get it from antibiotics and the drug companies don't want that getting out!

Jump to this post

@ngorman25 I had never EVER heard of Cdiff before I got it. And I went almost two weeks thinking I first had the flu and then the Ecoli scare was going around with romaine lettuce and I thought I picked up Ecoli. So after waiting 12 days, I went to the doctor. By then, it had taken over by body. And I had googled enough things and saw a photo of Cdiff stool that looked just like what I had started passing. I never, in my life, thought I would be talking to people about BM's. 🙂

REPLY
@nettecook

@ngorman25
I had the FMT on Feb. 28. Two weeks later I had a horrible day of constant diarrhea. Then it cleared up and I’ve had more trouble with Constipation. Then I will have a day here and there of diarrhea. I’m wondering if I’m experiencing IBS again. I see my doc next week so we’ll see. I don’t feel good. However, I have a friend who seriously almost died after gallbladder surgery and getting CDiff and the FMT saved her life and she hasn’t had trouble since! I’m
Probably not a great person to judge FMT success because I have underlying issues like Crohn’s Disease, IBS, and RA. I’m on immunosuppressive drugs as well. I really hope this is exactly what you need!!!!

Jump to this post

@nettecook Oh thank you so much! I am just starting the prep. Hoping you get positive feedback from your doctor next week. Will keep you posted. Take care!

Liked by nettecook

REPLY
@pines

@ngorman25 I had never EVER heard of Cdiff before I got it. And I went almost two weeks thinking I first had the flu and then the Ecoli scare was going around with romaine lettuce and I thought I picked up Ecoli. So after waiting 12 days, I went to the doctor. By then, it had taken over by body. And I had googled enough things and saw a photo of Cdiff stool that looked just like what I had started passing. I never, in my life, thought I would be talking to people about BM's. 🙂

Jump to this post

@pines Same with me! I thought I had a stomach virus. But by the third day I started feeling very weak like I was going to faint. My daughter took me to the er and that's when they tested me and said I had cdiff. None of us had any idea what they were talking about! Actually, I think it's better that I had not heard of it back then cause I might have jumped out the window​! At first, they acted like I would be there for a few days. Eight days later they let me out and two days later I tested positive again! And the rest is history!

REPLY
@ngorman25

@pines Same with me! I thought I had a stomach virus. But by the third day I started feeling very weak like I was going to faint. My daughter took me to the er and that's when they tested me and said I had cdiff. None of us had any idea what they were talking about! Actually, I think it's better that I had not heard of it back then cause I might have jumped out the window​! At first, they acted like I would be there for a few days. Eight days later they let me out and two days later I tested positive again! And the rest is history!

Jump to this post

They just wouldn’t listen to me for almost 3 months. I just got sicker. I know someone else who was diagnosed right off and cured in 2 weeks but felt bad for a month. There should be laws against the drugs that give you this disease and the drug companies should be held accountable

REPLY
@losthope

They just wouldn’t listen to me for almost 3 months. I just got sicker. I know someone else who was diagnosed right off and cured in 2 weeks but felt bad for a month. There should be laws against the drugs that give you this disease and the drug companies should be held accountable

Jump to this post

I know many doctors are no longer giving Flagyl for the initial Cdiff. They are going straight to Vancomycin. I wish mine would have done that. And I wish I would have received Dificid after the second bout. I have a friend who was given it after her second bout and she didn't have any further relapses. I didn't take Dificid until my 4th bout.

REPLY

I finished dificid on Friday the 15th and I'm back to having symptoms..Mainly just going multiple times a day. I have been nauseated, broke out with a rash on my face yesterday, I'm just thinking it is not really gone….Not sure what my next step will be – referral to GI and go from there I guess. So frustrating!!!! I just wonder what it would be like to go through a day and not be sick to stomach!

REPLY
@pines

I know many doctors are no longer giving Flagyl for the initial Cdiff. They are going straight to Vancomycin. I wish mine would have done that. And I wish I would have received Dificid after the second bout. I have a friend who was given it after her second bout and she didn't have any further relapses. I didn't take Dificid until my 4th bout.

Jump to this post

@pines @losthope My Dr. said Flagyl is no longer recommended. Nor is metroingel (SP??) She said vanco first, then vanco pulse taper, then dificid, but I talked her into skipping the pulse taper and going right to dificid, but I don't think it is gone yet…Not sure what now….

REPLY
@femalegolfer

@pines @losthope My Dr. said Flagyl is no longer recommended. Nor is metroingel (SP??) She said vanco first, then vanco pulse taper, then dificid, but I talked her into skipping the pulse taper and going right to dificid, but I don't think it is gone yet…Not sure what now….

Jump to this post

I didn’t do Dificid at all because the copay at the pharmacy was going to be between $1000-1500 for 14 days. I did Flagyl (useless) then Vanco 3x, then FMT.

REPLY

Well, I survived (barely!) the colonoscopy prep and had the colonoscopy and fmt this morning. I was not able to"hold it" for very long after the procedure. Don't know how much they give you so I can't tell if I lost it all. I guess only time will tell! Will keep you all posted.

REPLY
@ngorman25

Well, I survived (barely!) the colonoscopy prep and had the colonoscopy and fmt this morning. I was not able to"hold it" for very long after the procedure. Don't know how much they give you so I can't tell if I lost it all. I guess only time will tell! Will keep you all posted.

Jump to this post

@ngorman25 I'm fortunate that Dificid worked for me after Flagyl and two rounds of Vanco failed. But I had decided FMT would be next but I wanted to talk to my GI about doing the FMT in capsule form from Open Biome. The price was $635 and I would even be willing to pay for it if my ins. didn't. Please keep us posted how you're doing. It would be so hard to try to hold it in for any period of time. Hopefully there's enough higher up in your colon that it will "go to battle" on the Cdiff spores.

REPLY
@pines

@ngorman25 I'm fortunate that Dificid worked for me after Flagyl and two rounds of Vanco failed. But I had decided FMT would be next but I wanted to talk to my GI about doing the FMT in capsule form from Open Biome. The price was $635 and I would even be willing to pay for it if my ins. didn't. Please keep us posted how you're doing. It would be so hard to try to hold it in for any period of time. Hopefully there's enough higher up in your colon that it will "go to battle" on the Cdiff spores.

Jump to this post

@pines Well, they gave me one loperamide right before the procedure. Then they gave me another one right after the procedure. However, I don't think loperamide works that fast especially since I was still getting rid of the bowel prep this morning. I think they should have told me to take before I left home. But what do I know?

REPLY
@pines

@ngorman25 I'm fortunate that Dificid worked for me after Flagyl and two rounds of Vanco failed. But I had decided FMT would be next but I wanted to talk to my GI about doing the FMT in capsule form from Open Biome. The price was $635 and I would even be willing to pay for it if my ins. didn't. Please keep us posted how you're doing. It would be so hard to try to hold it in for any period of time. Hopefully there's enough higher up in your colon that it will "go to battle" on the Cdiff spores.

Jump to this post

@ngorman25 I think they put quite a bit up there and some is saline. I lost saline for sure and some of the other. I read that FMT through colonoscopy is the best. Capsules do not work as well. However, we all have to do what we can. Every experience is different! I feel that I am on the road to recovery. Today has been much better! I hope this does it for you!!

REPLY
@nettecook

@ngorman25 I think they put quite a bit up there and some is saline. I lost saline for sure and some of the other. I read that FMT through colonoscopy is the best. Capsules do not work as well. However, we all have to do what we can. Every experience is different! I feel that I am on the road to recovery. Today has been much better! I hope this does it for you!!

Jump to this post

@nettecook If you don't mind my asking, what kind of anesthesia did you have? I had propofol but my throat is pretty sore. Don't know why other than being so dried out.. Have been drinking water all day but doesn't seem to make a difference. Was wondering if it was from the propofol.

REPLY
@nettecook

@ngorman25 I think they put quite a bit up there and some is saline. I lost saline for sure and some of the other. I read that FMT through colonoscopy is the best. Capsules do not work as well. However, we all have to do what we can. Every experience is different! I feel that I am on the road to recovery. Today has been much better! I hope this does it for you!!

Jump to this post

@nettecook I'm happy to hear that you're doing better today. I sure hope the FMT works for you. I was worried after your comments yesterday. It's nice to have people on here who have been through the procedure. Wishing you well.

REPLY
Please login or register to post a reply.