Vent. Probable relapse. Part II

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Bobbie
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Re: Vent. Probable relapse. Part II

Postby Bobbie » Wed Aug 06, 2014 11:59 am

See CDI - Nutrition for recipes and foods other's could eat.

susant
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Re: Vent. Probable relapse. Part II

Postby susant » Wed Aug 06, 2014 1:12 pm

I'm just confused because I have been negative for 4 and a half months and had been doing pretty well. I was able to eat a lot of things. Now it's like I'm back to square one but no c diff.

beth22
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Re: Vent. Probable relapse. Part II

Postby beth22 » Wed Aug 06, 2014 4:37 pm

IBS can do that. I've looked at various boards and people talk about doing well and then having "flares". I have had the same thing happen before too, but I have SIBO which probably doesn't help matters. Have you been checked for that?

susant
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Re: Vent. Probable relapse. Part II

Postby susant » Sat Aug 09, 2014 6:37 pm

I have been using VSL#3 for a week now and have gotten much worse. I have discontinued it now and am starting on a prescription medical food called enteragam. Anyone heard of it or have any experience with it?

beth22
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Re: Vent. Probable relapse. Part II

Postby beth22 » Sat Aug 09, 2014 6:56 pm

Yes, I have 4 boxes of it at home. My GI motility specialist is testing it on his SIBO patients. It is for people with IBS-D. It is not medication, but as you said, a medical food or supplement. My GI said it might not help, but it won't hurt. I have not had D lately, so I haven't used it, but I took some a few months ago with no ill effects. I take just a trace of VSL#3. If I take more, I get worse symptoms, but if I take none, then I am worse too. I am one of the people that don't tolerate high doses of probiotics. I would try the EnteraGam and see if it helps you.

skinnnygrl
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Re: Vent. Probable relapse. Part II

Postby skinnnygrl » Sun Aug 10, 2014 2:02 pm

uff da! as my grandmother would say! I have been through the gauntlet with this disease I have tested positive 3 separate times in a 5 month period. I have been on every medication even so far as to be drinking the IV form of vanco with distilled water.. finally having a FMT. which if something would go wrong it did! I was prepped with everyone on board as I hear the dr, come into the room, saying "This is it?" Come to find out the nurse that had prepared my donor had given her 2 tiny vials which she packed full. I heard her say I need a tupper ware bowl full... Oh no, is all I could think as I lay there, all hooked up and ready to go..Well long story short the donor was my beautiful 20yr old daughter, so now we have to sit and wait for her to go poo. They had her drink a liquid, black coffee, uggh this was not fun! Finally after bribing her she did an enema, and the Dr said there was enough. Fast forward 1yr. I am currently in South Central Alaska trying to let my body heal. I feel like it never goes away! I am normally 120lbs 5'6 and now I,m holding at 100. This disease is terrible! All from an antibiotic! I have spent a good portion of my time here, just being miserable! Between the damage this disease has done on my body, my life, finances,etc...... At the end of the day I feel like this disease lays dormant in my system, my muscles, my stomach, my headaches, need I go on... as we all or one of our love'd ones is suffering the same thing. This is my vent, and yes I do believe in FMT as I am now trying to have them do it again. I would even take the poo pill if I had it available that is how miserable I am!!!!! :(

seekingcure
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Re: Vent. Probable relapse. Part II

Postby seekingcure » Sun Aug 10, 2014 3:58 pm

skinnygirl, some people do require more than one FMT to recover. Some doctors recommend home FMT's via enema using the original donor. Of course, they would need to be retested. If money's an issue and your daughter is living with you, you might look into this option.
Bea

getwellsoon
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Re: Vent. Probable relapse. Part II

Postby getwellsoon » Mon Aug 11, 2014 6:21 am

I hope today finds you some better. I know what you mean. I have never felt like the CDiff was completely gone from my body. I still suffer with nausea in the morning, D from time to time, M and just don't feel well. I have regained my weight, naturally I would do that as I have always had a weight problem. I hope you don't need the second FMT but if you do I will keep you in prayer that it does the trick this time. Hang in there, its all we can do sometimes. Let us know how you feel.
CAROL

justme
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Re: Vent. Probable relapse. Part II

Postby justme » Sat Aug 16, 2014 5:22 pm

This horrid disease affects some people far longer and to a greater degree than others. It also seems that some of us react to it differently. Some acquire accompanying conditions they didn't have before, like IBS, SIBO, lingering Colitis, etc. Existing conditions, like age, unrelated health problems, a more sensitized digestive system, and compromised immune systems can prolong the healing process. I've been reading all of the stories on this site and still can't understand why some people relapse and/or can't tolerate food that they had no trouble putting in their diet prior to getting C. Diff. I am 17 months into recovery, didn't relapse, and have been tested negative for any C. Diff toxins, yet I still can't eat raw vegetables, dairy, spicy food and sweets. I also cannot tolerate the probiotics. They give me terrible gas. But, I am old, have a bad heart, and have acid reflux disease. Okay, I can see why I'm so slow in healing with colon pain nearly every day, but some young people with few or no existing conditions, react even worse than me and have relapses. Yet, my neighbor got it, was given both Flagyl and Cipro (a suspected cause of C. Diff) together and was back on her normal diet in 4 weeks with no lingering issues. She is nearly 60, overweight, never exercises, and travels frequently. It defies logic and I am bewildered by the vast differences in reactions to this disease. For me, the big problem I have now is a fear of antibiotics, and knowing this thing never really dies. It just goes dormant waiting to strike again when I use an antibiotic for an infection. I know that fear is shared by all of us on this site, and is something we all have to live with. When we say "we feel your pain", we really do.
Aloha to all,
Anne


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