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C. difficile – Are your guts ever normal again?
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 ?
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@lindac61 I also take Florastor or another brand of S. Boulardii every single day. I googled the Dificid coupon but the site that I went to where it said it would be $50 also said that those on Medicare were NOT included in the offer. Not sure why because even with our Medicare and Humana RX plan, my deductible was still almost $1,000. My GI prescribed it through a cancer center pharmacy and they found a place that helps with high RX's so I only had to pay $78. When it was through Walmart, it would have been a little over $1,000 copay.
@nettecook So far so good but I am still on vancomycin taper. I will finish on Monday. For me, all my relapses happened between 2 and 3 weeks after stopping medication. So, I figure I really won't know if it's working until near Easter. I feel ok now but I have felt this way before each relapse. Time will tell! How are you doing?
I had cellulitis (hospitalized) in May and then C. Dif in January. Did Vanco and it seemed to work but then got UTI. Finally finally i got into see specialists this week who really knew something bout Diff -- Infectious Disease Specialist and GI with a C.Diff specialty. I have mild MGUS (monoclonal gammopahty of unspecified significant -- which about 3% of people over 65 have) and mild Rheumatoid Arthritis. Both these specialists said that both of those diseases damage a protein that is important to the immune system -- and that they recommended and then the GI offered to do a fecal transplant if I get a relapse which they both thought was pretty inevitable given that my immune system was weak from MGUS and RA. In fact, I may be relapsing now due to antibiotic i took for UTI. In any case, it was the fact that I have these two underlying conditions, which are very common, which seems to have helped me to gain access to FMT. Also I was not told anything about having to pay. I
@ngorman25 Did your doctor want you to continue the Vanco taper AFTER your FMT? I thought that vancomycin also killed the good bacteria. I sure hope the FMT works for you.
@pines Yes, I only had 4 pills left and take 1 every 3 days.
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1 Reaction@ngorman25 I didn’t do Vanco after my FMT. It’s strange that we all have been given different regimens. I’m doing well I think. I have some days of diarrhea but it’s not everyday. It seems different. I think it will be awhile until I’m “normal” but I have Crohn’s Disease so normal is relative. 🤪 I’m glad you are doing well so far!!!!
I am glad you were able to find help with the cost- such a racket it seems!!!
@nettecook It's five months today since I took the last Dificid and I still have days with diarrhea. But it's completely different than what it was like during my 4 bouts of Cdiff last year. I'm so happy I found this site and we're able to share so much. I can't think of any place else I would EVER be talking about BM's. 🙂 🙂 I'm happy to hear you're doing better.
@ngorman25 ...So Feb 28 was my FMT. I’m just not feeling that great. I have lots of bloating and cramping. I alternate between constipation and diarrhea( mostly diarrhea) but not C Diff diarrhea. Someone mentioned a bad taste in their mouth and I remember that. I wonder if it is the Vanco? Anyway, waiting to feel normal. Just tired of....I know you all feel the same way.
@ngorman25 It's been 5 months since I finished the Dificid and I'm still not "normal." I have days that my BM's are not formed. Not the same as Cdiff diarrhea but not anything like the normal BM's prior to Cdiff. I've read on here that some people take a year to be back to normal. Wishing you both well after your FMT's.