Vivonex for one month

[devi]

This is my first posting on the c-diff site, and actually I have never joined a chat room before. I hope I will have some replies to get started.
I have had c-diff for about three months. I tried Flagyl and that made me sick. I have been on Vancocin for about six weeks. My GI started me on 250mg 4X/day, but has reduced it to 125mg. 2X/day because the diarrhea has reduced in frequency.
I have been using Vivonex elemental diet which involves mixing packets of powder with water several times a day. Otherwise, I am only allowed to drink plain water-no carbonated water, no food, no other drinks, no even any chewing gum or mints.
Has anyone else been on Vivonex? How long were you on it? I have lost about 15 pounds to date (107 lbs. now)
I hope to hear from anyone. I am very discouraged and depressed.
Thanks for any replies. Devi

[stefdub]

Hi Devi,
I am so sorry to hear that you are sick as well. I am new here also and the diet you mention does not sound like anything I have read about anywhere yet. Is it some kind of probiotic?

Hang in there. We will all get through this. Tell me about your case please.

Stefan

[Bobbie]

devi,
Welcome to the site. Read the first forum ALL USERS READ THIS FIRST & its subtopics. They will guide you in using the site & answer some of the most frequent questions. Read Dr. Borody’s & Dr. McDonald’s articles and some of the topics in FAQ – especially Hygiene, Nutrition, & Testing.

Let's hope you are one of the lucky ones who recover with one to two rounds of Flagyl or Vanco. If antibiotics contributed to your C. diff., be careful about taking them again. (See FAQ-Antibiotics.)

I have never heard of the Vivmes elemental diet. Where did you get the info. for it? Sounds pretty drastic to me, but I am not a doc. Does your doc. agree (or suggest) this diet?

I, too, lost lots of weight but gradually gained it back with the supplemental drink Ensure Plus. Ask your GI about it.

You will recover from this. Depression & anxiety are part of the disease. See FAQ for Ten Commandments of Surviving C. diff.

[devi]

Stefan,
I hope this is the way I respond to your kind reply to my recent message. It's comforting to know there are others out there dealing with this, although of course, it is also saddening.
I contracted c-diff after taking a round of Augmenten (sp?) for a small infection on my toe. Initially, I was pleased that the antibiotic worked because a similar infection a year ago left me with MRSA - an antibiotic resistent staph infection. I now believe that the number of antibiotics I had to try before finially saving my foot from amputation set me up for getting c-diff this year.
I also believe that my GI doctor was too conservative when I first contacted him about the diarrhea I was dealing with. He had me change my diet a few times before even considering medication. Perhaps, this does work with others, but nothing seemed to make a difference for me.
Also, lab results always came back negative for c-diff.
For a while there, I was going to the bathroom 30 times a day and even using diapers seemed useless. (I'm sorry if this offends the standards of this site).
Unfortunately, I suffer from peripheral neuropathy which causes severe pain in my feet. This is common in diabetics, but they have never been able to find the cause for my problem. I take strong pain medication for this ailment.
My GI doctor did prescribe Cholestyramine to help reduce the symptoms of c-diff. The Cholestyramine results in problems utilizing other medications, it blocks their absorbtion. My pain management physician has been working closely with me to try to get my pain under control despite this complication.
OK, I'm sure that's enough of my story for now. Thanks so much for asking. I have some good friends (although I live alone) but they must be quite tired of hearing about my problem by now.
I've been reading a lot of postings on the support site and I'm interested in what is happening with others who write in. If I can be of any help to anyone else, that would really please me.
Devi

[devi]

Bobbie,
Wow, it's so nice to know you folks are out there.
The Vivonex "elemental diet" was prescribed by my physician. It's my understanding that the Vivonex is processed in the small intestine. Because no food is getting into the large initesting, where the c-diff bacteria resides, it is supposed to "starve" the c-diff.
I think it was given to me because I was not able to eat any food without severe diarrhea. Even the clear liquid diet I tried, that included apple juice, Gaterade and chicken broth did not result in reduced symptoms.
I have another appointment with my GI doctor on Tuesday morning, but I can't say I have improved this last week.
Well, I can go out of my house now, because the instances of diarrhea have greatly reduced. But, the fact that I am still having diarrhea at all is the problem.
I just want to know that there is someplace to go from here in terms of treatment. Is it appropriate to be asking about the "broth" I've read about after only about six weeks of antibiotic treatment?
How do others of you keep any food in your system? I am taking Florastor as well as another probiotic my doctor recommended: Align.
I have to go now, but I will anxiously check any replies later this evening.
Again, I've been reading your many postings and held off joining because I kept thinking I'd be better soon. I'm so glad I've joined in.
Devi

[stefdub]

Hi Devi,
really seems like the universe sometimes gives sour candies in a whole 5 lbs can to some of us. I am so sorry to hear about how things developed and that you could not find somebody to help you at once. I am not sure how much timing matters as I am not a doctor but I heard from several people, the sooner Cdiff is identified and treated, the better. I pretty much got C diff after clindamycin and my first couple of docs were not worth anything. Luckily as soon as I got sick, I researched and was pretty sure c diff was the answer to my symptoms but my stool test (I had to ask the doc to PLS test) came back negative as well. Finally I went to a GI who gave me Flagyl and I have been on that for 10 days now, 4 more to go. I still have some symptoms, not sure if it is from the meds or still the c diff. It helps to know that there are people with the same sad issue. Makes one feel less like an outcast with this awful disease. I am glad you can now search through this site and find some useful hints and just the emotional support of this great community here.

We will fight this beast, I promise.
Strength to you!!!

Stefan

[Christina]

Devi,

I understand that you couldn't take Flagyl and I must commend anyone who can stand it. If I am reading your prior post correctly you are now tapering your Vancomycin. I'm just trying to get a clearer picture hear so bear with me. How many rounds of Vanco/Flagyl have you now had? This will help with your what to do next question.

Christina

[devi]

Christina,
Thanks for your interest. Fortunately, I only had to endure one round of Flagyl because my doctor said my insurance company would cover Vancocin once I failed with the Flagyl. I have had several "rounds" of Vanco. I don't know if they really can be considered "rounds" because I never really have been off of it once I began. But, I took a much higher dose for several weeks. This was in addition to Cholestyramine, Florastor and another probiotic called Align.
There actually was some improvement, but I came down with a secondary infection in a salivary gland. The ENT doctor put me on Keflex, which resulted in increased c-diff symptoms. I had thought that once the Salivary gland infection cleared and I was off of Keflex, my improvement woudl continue.
I was wrong. It seems, I have had a couple of days when I was a tiny bit improved, only to have my hopes dashed with the return of frequent diarrhea.
Yesterday afternoon, my GI doctor called to inform me that the latest c-diff test was negative. What now? Now he thinks the c-diff may have morphed into some other problem. If I'm not at all improved by my next appointment, Tuesday morning, he'll start ordering different tests. He mentioned a CAT scan and a colonoscopy to determine if he can find another cause for my problem.
By the way, he told me some people are on this Vivonex + water only diet for years. I'm really afraid now.
Devi

[Christina]

Since you've had so many rounds of Vanco and so many issues I think following your GI's advice about a colonoscopy is a great idea. Most if us have had at least one if not more, during our C-diff fight plus the CT scans, etc , etc as well.

Do beware that false negatives are extremely common w/ C-diff testing and that you may still have C-diff. Sometimes multiple tests are required to actually get a positive result and even then you may not get a correct reading. If you feel it's still C-diff you are most likely right as we all know our bodies best so you may need to keep fighting to get heard. Also, read FAQ's - testing.Don't give up or give in until you know exactly what is going on.

Good luck and keep us posted.

[jennie]

Devi, if you were put onto another antibiotic, it would make the c.diff worse. Vancomycin ought to pull it back under control again, although dosage is the question.

If your doctor had you test you while you are on Vanco, it would most likely test negative. It does not mean it has morphed, it means they cannot find it on the meds. Many docs do not realize that trying to find c.diff on meds is the same as trying to find many other kinds of infections, when the patient is on an antibiotic, or antimicrobial. As a general principle, we have to be off meds for 10 - 14 days, before it can be found again. For others it can take a lot longer than that, and then again, others cannot get off the meds without becoming very sick, and very quickly.

[devi]

Jennie and everyone who is supporting me,
I was wondering how I might know if I am improving. My number of bathroom trips varies. Weeks ago, I was down to three per day. Recently, it's back to eight or ten. I have been told that some people don't go to the bathroom at all while on Vivonex (except for peeing, of course). Such patients are on the Vivonex for long periods for other dianoses. Some have small intestinal bactional overgrowth (SIBO), others have had bowel resections and still other patients have Crohn's disease. So the number of bathroom "visits" may not be a true measure of my progress-or lack of progress.
But, I did want to ask those of you who have experienced recovery from c-diff, how did you know you had improvement? How long did it take before you really felt your health was moving in a positive direction?
I was very fortunate not to have some of the severe signs of c-diff. I did not have a fever or severe cramps. I wonder if this is due to my extremely restricted diet.
In the past, my doctor told me that once I improved, I'd be moved to clear liquids for a while and then to a "low residue diet". I want so much to enjoy food again, yet the truth is the idea of eating sort of scares me right now.
Anyway, thanks to all who are responding to my messages.
Devi

[Christina]

It took me 13 very long months after my final treatments to get to where I am today. Almost as normal as before C-diff and free from all of my IBS meds. On bad days which are very rare now, I will still go 5-6 times per day. Improvement would mean no diarrhea, stomach pain or any other symptoms you may have experienced when you had your initial bought of C-diff regardless of if they were severe or not.Without any further relapses after a twelve week period of being off of treatment. It can take your body a very long time to heal afterwards and some are left with permanent problems such as IBS. Unless you are genetically set up for Chron's or another IBD C-diff should not lead to any permanent severe issues. If you are genetically set up for such an IBD then C-diff could trigger the clinical condition of which you may not have had any symptoms of prior to acquiring C-diff.

[jennie]

Devi, As you will see, there are more than a few of us who have battled this for a long while. And because we get very seriously sick from it, are put, or kept on meds for long periods of time. This "morph" business is not correct, nor have we, or the bug, mutated. It is unfortunate, but it sounds to me, my non-medical opinion, that you had c.diff badly. And you are fortunate that it did not flatten you, and have you doubled-up in pain, as it has more than a few of us. It is my sense that it is quite individual, that your c.diff, your strain, and your body's response to it, is what determines how sick you get, and what happens to you.

How to know if you are improving? The goal is to be symptom-free, to feel well, to be able to eat a normal diet, maybe without lactose or wheat, which can be triggers. Spice really the no-no, for a while. As many of us know only too well, there may be a new normal to adjust to.

I have never heard of this diet, have not seen a post about it before, but perhaps others know of it?

I found that the better I got, the more I was able to tolerate a normal diet. The real challenge is to re-colonize with good bacteria, that is our best defense. As I have learnt on this site, the way to get there is to eat healthily, a balanced diet, take yoghurt and probiotics if they help you. Lots of us know it takes time, months even, to be able to tolerate fruit, veg, fibre.. but that it is how we can get ourselves better, step by step.

Vanco really ought to bring it under control. It seems to me you had a set-back, the 2nd round of antibiotic.

This is to say, we ought to be able to eat a fairly normal, bland diet on Vanco, it is an extraordinary med. That would be my sense of it, others will hopefully post their views.

The addition of Questran: as you have found, it binds everything, the meds are not able to do their work. I know the docs use it when the d is very out of control. But, do you know to take it hours apart from the Vanco? If you take it at the same time, the Vanco is made a lot less effective.

I also want to share with you that indeed some docs go ahead and scope or scan. But a scope result too is not likely to tell everything, if you are on meds.

Devi, you have been through so much. Having got through 2 superbugs! Do you have an Infectious Diseases specialist as part of your care team? If it was me, I'd ask for a consult, because it is complicated. That's the thing with c.diff, if one has something else going on, another medical condition, another infection... you can and will get through it, but it will take time, and patience. Please keep us posted!

[devi]

Jennie,
You are so wonderful to respond to my messages in depth. Actually, I already avoid wheat, in addition to all gluten and most products containing lactose. I can't help wondering whether my celiac or celiac-like reactions are related to my suseptability to c-diff.
But my pre-c-diff diet consisted mainly of fresh fruits and vegetables. It's going to be tough giving them up for a while. But, after giving up just about everything, I guess it won't be so bad.
Ironically, until about eight years ago I was obese. I weighed 225 lbs! I lost over 100lbs. following the Weight Watchers' program. I never thought I'd worry about losing too much weight.
Although my wonderful pharmacist has assured me that my GI doctor is excellent, I have decided to consult another specialist. Finding the right doctor for another opinion has been my concern. I finially faxed another of my doctors (endocronologist for thyroid function) for help. He works at the University of California at San Francisco. That is one of the finest teaching hospitals in my area. I asked him to recommend a gastroenterologist.
I'm hoping he has a colleague he can refer me to and can intervene for me so that I don't need to wait months as a new patient if he can make such a referral.
I think you're right. Someone who can tell me why my immune system seems to be compromised would be most helpful.
I'm trying to prepare myself for a long run with this illness. The fact that it is hanging on so long suggests to me that I may be one who has recurrences either with or without new antibiotic ingestion.
Yes, I'm aware of the waiting period between the Cholestyramine and other drugs. That is why I have a chart with times I take my various prescriptions. You see, my pain medications have to be taken three times per day and need to be ingested at least one hour before and at least four hours after the Cholestyramine. Right now, my regimen begins around 6am and is done at midnight. If I miss my timing, I set my alarm for middle of the night pills. And, even though my pain management specialist has prescribed a Fentanyl patch that goes on my skin to avoid needing to be processed through the stomach, my feet often hurt.
Boy, I sure wish this ugly disease would get resolved soon. My daughter, who lives on the other side of the country, wonders if I should be hospitalized to assure my weight and hydration remain at healthy levels. But, I feel a hospital is no place for an otherwise healthy person.
Again, thanks to all who have followed my rather long ramblings. Perhaps, I waited too long before joining your group. But, I certainly do feel very supported by your support group. I hope I can help others if at all possible.
Devi

[devi]

Hi Jennie,

I was relieved to see that you are in a very different time zone, I sure didn't want to think you were writing at 4:00am. Not that I haven't spent quite a few sleepless nights with this ailment.

It is clear to me from reading many others' postings that my course of c-diff has been short in comparison with what some have suffered. I believe I have had c-diff since the beginning of July, but it became severe about six weeks ago.

I think my doctor gave me the Cholestyramine in addition to Vancocin because the frequency and volume of the D were completely out of hand. I was going to the bathroom every 20 to 30 minutes.

Initially the Vancocin/Cholestyramine seemed to help. As I wrote before, that progress was halted by the addition of Keflex for a salivary gland infection. But, that has been my pattern all along: improvement and then relapse.

I was taken off of Cholestyramine when my Vancocin dose was reduced to 125mg. twice a day. Again, the improvement didn't hold, even after Keflex had been completed. I went back to 10 -12 bathroom trips per day.

Interestingly, after the first horrible period, my daytimes have been quite a bit easier than once evening falls. I can go out and do errands and even invite people to my home if it is in the morning or early afternoon. At those times, I may only need the bathroom a few times.

Last night, I was actually able to get through the night without needing the bathroom. This is an improvement. But, I think I may keep it from my doctor for now. My next appointment with my gastorenterologist is tomorrow morning. I don't want anything to postpone his ordering the tests he wants to do.

I read in my newspaper that there is going to be a nurse's strike in local hospitals. I hope this doesn't interfere with these tests. I guess the doctor would do the colonoscopy, but a CAT scan needs technicians.

How long have you been going through this, Jennie? I see that you joined the site in 2005. Has it been a case of on and off c-diff? Have your symptoms been continuous? What has your diet been like -when the c-diff is active and when it's (hopefully) in remission? I'll go back and read more of your postings, but I must say I am in awe of your ability to keep what appears to be a positive attitude. I'm sure your help for others, like me, contributes to that.

I am acutely aware that there are much more virulent forms of c-diff than what I have. My brother's mother-in-law went into the hospital for knee replacement surgery a few months ago. She contracted c-diff while there. It was so very serious that her colon was removed! She has had terrible problems since then, involving kidney failure and other life-threatening difficulties. That really puts my problem in perspective.

Today, I'm going to call my primary care physician for the name of a different GI doctor for a second opinion. I'm going to follow-up my fax to my endocrinologist for the name of a doctor, too.

Thanks for your interest.
Devi