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sue6408 (@sue6408)

C. difficile – Are your guts ever normal again?

Digestive Health | Last Active: Dec 30, 2022 | Replies (628)

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Hi Ngorman25, so sorry younjad to battle the CDiff. I have had CDiff more times then I want to know. Since my daughter was born in 1992. I had it for a year on and off. Then got it again after a bout of antibiotics. Then years later I started getting the symptoms really bad with diarrhea and bad cramping for weeks on end. The tests were Negative which I could not believe. I would be put on Flagyl and sooner or later it would go away. This was three years of suffering with this. Running to the bathroom after eating and always needing to know where the bathrooms were near. Finally within the last month after months of on and off symptoms which I was told I most likely have IBS, I thought well I have to stop this diarrhea so I started taking Imodium. Total mistake. I knew in my own mind I had CDiff but since it kept coming back neg I went with the IBS. Total difference though between IBS is people do not go through the night. I was going about 18 to 20 times a day and night. . I was exhausted and getting very sick. Fever. Etc Felt like I had the flu. Taking the Imodium made CDiff go crazy. Went to ER and they dismissed it as the flu. Well, that was enough, as I was suffering intensely with a 102 to 103 fever for weeks. With the worst pain and diarrhea. Finally my dr said go to Orlando Health Hospital, ASAP. I walked in feeling quite sick and thought I am either going to die because they are Not getting positive test results and then they don’t treat or these people are going to help me. I had had it. Finally, the wonderful ER doc sent me up to cat scan for a scan of my colon. Then he wanted to culture of my stool which was what I would refer to green tea of the worst kind. The doc came quickly innafter the tests and said you have a bad case of colitis with CDiff and you are being admitted to critical care. Finally the test came back positive. Since I have chronic CDiff often times the tests come back negative. They put me on Flagyl and Vanco right away. I was vomiting everything I ate and still going about 10 times an hour. Horrible. After almost two weeks in the hospital I was able to eat a little which is only carb type food, everything liquid I would throw up right away. Bread stayed down. Went home on vanco now on for three weeks. Just now functioning more normal but still not perfect. I know once I go off this vanco the CDiff will return. So I have opted for the Fecal transplant. My docs have all recommended it and I am now in the first part of the process of getting ready for it. I have read of the amazing success. But wanted to ask those who have had it have you had any weight gain the transplant!!!! I would love to hear from people who have done this. I am super excited to know there is a cure as I have been suffering for a long time with many episodes of long term hanging in bathrooms and being in chronic pain. Not my favorite place to be. Let alone having to eat almost nothing to try and feel better. Thanks for any feedback and I truly feel for those who have to endure the horrible world of CDiff. Best of luck to all as there is help out there.

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Replies to "Hi Ngorman25, so sorry younjad to battle the CDiff. I have had CDiff more times then..."

@suzannedee Hi, suzannedee, today marks 4 weeks post fmt. I wish I had words of encouragement for you, but I don't! Up until two days ago, I felt really good. But on Wednesday night I started having some mucus discharge. I am still having a lot of mucus and know I have to contact my gastro doctor. I am terrified! I haven't even mentioned it to my family yet. I am so done.

@suzannedee I am so sorry you have been so sick. After my first bout of CDiff my test came back negative but my doc was convinced it was a false reading so he treated me 3 more times before the transplant. I think false negatives are common. I had the FMT on Feb 28 and it took at least a month until I was convinced it was gone but I still am not “normal.” I don’t feel like I have been hit by a truck anymore, energy is slowly coming back, but my bowels are unpredictable. I think I do have IBS again(I have it and Crohn’s) but the horrid CDiff seems to be fading for now. The nurse told me when I called that it takes a good while to feel good. Here is what is so strange. I did not lose weight. I also don’t lose weight from 18-20 times of diarrhea a day with Crohn’s. So strange. Vanco can cause weight gain and prednisone can cause weight gain. I was usually on prednisone with Crohn’s flares so I guess that’s it. I did not have to be admitted for CDiff. You were really very sick. I’m so sorry no one took you seriously. I’m
Also scared to hear your first bout was in 1992 and you are STILL dealing with the risk of CDiff. Ugh Good luck with the FMT. It is not a big deal at all.

@suzannedee My heart goes out to you. I also tested negative between my 3rd and 4th bouts of Cdiff last year. I had to go almost a week before they would retest knowing that it was Cdiff. After reading up on everything I could find, I also found there was more than one test for Cdiff. It takes longer but is more accurate. I too did Flagyl, Vanco, then Vanco taper for 6 weeks and finally the expensive Dificid (fidaximicin). I had decided FMT would be the next recourse for me. Thankfully, the Dificid worked. I'm still not "normal" and realize that it could take a year or longer. I was fortunate that I made it through winter without sinus infections and needing an antibiotic. Clindamycin for one was what started this dreadful Cdiff for me. Stay positive and keep us updated after your FMT.