How do you know you are "cured" and stop testing

[christyn]

I believe I started my c-diff journey in March. Luckily I have not been as severe as other posters I have read about on this site. Very thankful but also feel horrible for everyone that is suffering so severely with this horrible disease.

I have been through all the antibiotics, 10 days flagyl, 10 days vancomycin, 10 days dificid (forgive my spelling). All of them had a 2-3 week wait time in between before the nurse practitioner (not the doctor, which I just discovered she has not been speaking with this entire time) requested a retest. The test has come back positive each time. After the Dificid, I feel so much better than I have since this started. Nurse practitioner wanted to treat again but I convinced her to speak to the doctors because CDC says not to treat if I am feeling better. She called back and admitted that testing was being done too soon and to call back in a couple of weeks with an update. Needless to say I am very frustrated and planning to find another doctor.

At this point, my BM are not diarrhea but occasionally mushy 1-2 times a day and occasional discomfort in my stomach that I believe is more reflux. I will also have a feeling of being swollen and pain in my tailbone area that I am wondering is just the inflammation from my colon. My diet is also very limited on what I can tolerate and I know that I may always have issues with some foods.

I read on this site and others that the c-diff could have colonized and I will test positive but do not need to be treated. At what point do I consider myself "cured" and move on with my life? I have been on Enteragam since March. Could the Enteragam be preventing some symptoms that are making me think I am better?

Thanks so much for the help and support.

[beth22]

Some people test positive for quite a while after having c difficile. Unless your symptoms get worse, I would not test. If you are concerned, go and see an ID doctor. The one I saw said not to treat unless I had WD that did not clear up in a day or two. He told me to take Pepto Bismol, which I did. It sounds as if you are doing ok. Are you taking any probiotics or just the EnteraGam?

[christyn]

Beth22.....Yes I am taking Florestor and ProbioMax. My nutritionist is helping me with supplements. I have thought about finding an ID doc and I may have to since I am not in agreement with how my GI doc is handling the situation.

Thank you for your reply.

[georgina]

Going to the toilet only once or twice per day with a soft serve without other symptoms doesn't sound like active Cdiff. In recovery stool will have abnormal consistency , so unless D hits testing is pointless.

[christyn]

Georgina....thank you for the input.

Does anyone know anything about the Enteragam? If I still have c-diff would I have D or more BM while still on Enteragam?

Thanks.

[georgina]

Enteragam is a medical food that can boost immune response and also acts as a binding agent and carry left over toxins outside the body , but is doesn't have the potency to stop a relapse.

[christyn]

Thank you Georgina.