Vivonex for one month

[Jayne]

Devi...so sorry to hear that you have been suffering with one thing after another. I too have had "one thing lead to another" & it can be very tiring.

From what I read Vivonex appears to be a dietary supplement-is that correct? I know that for 2 wks after my initail CDiff onset that any food seemed to increase my diahrea (D) & abdom pain, so my drs limited me. I didn't really care to eat at 1st because of the associated symptoms that came w/eating. I was put on a "fiber & lactose restricted" diet for about 1 month, then I gradually tried to add in small amounts of apple sauce, canned fruits & vegs as tollerated. My GI explained it to me like this..he said it's like the CDiff was a raging forest fire that wiped out the environment in my intestines & it needs time to heal & regrow (fiber would irritate the already damaged lining).

I too have an immune compromised system & my GI says I may have developed Colitis or Chrohns from it. From what I have read, some do end up w/a post-cdiff problem (but hopefully we'll escape that!). It can just be trial & error to see if your system is ready to handle food again-I would discuss that w/dr & ask for an explanation as to why so long w/out any food.

It is good that you are getting a 2nd opinion. I would definately bring up the subject of "false neg" testing while on Vanco & also discuss the necessity of Questran at this point in the game. I had to stop taking it because it bound me up too much which can hurt more than help. If you are averaging 3 or so bms/day you probably don't need it at this point-again ask your Dr (coupled w/the fact that it interferes w/absorption of other meds).

Scoping is a good diagnostic tool for evaluating the damage from cdiff or the progress of healing. It is usually very helpful. Not that bad-honest.
(I'm having my 2nd round of upper & lower scopes Wed 10/10.)

On a good note- you have made some progress. When I get down about how long this thing has dragged out (mine has been 5 mos) I try to see the improvement I've made. I can eat more foods, I am not having 20+ bms/day (down to about 5 to 7 every other day or so) & I'm not in the hospital. Taking 1 day at a time has helped me. When I focus on what I CAN do- I still find joy in each day & prayer has really helped. Also this amazing support site lets us know we're not alone in this fight.

Please update us as to how you're making out. Big hug.

[devi]

Jayne,

Five months with c-diff? You sound like you are holding up really well despite what you have been through. You, and others on this site have really bouyed my spirits.

The Vivonex is considered an "elemental diet". My understanding is that it contains the elements a person needs for functioning. It has a balance of amino acids, carbohydrates, protein, etc. and it is even used for tube feeding by some patients. So for me, it is a meal replacement rather than a supplement.

Nevertheless, I have lost quite a bit of weight because I am allowed only water in addition to the Vivonex. I was having 30 episodes of diarrhea per day even when I was on only clear liquids (ginger ale, chicken broth, Gatorade and the like). This current regimen has reduced my diarrhea to about 8 to 10 per day and I'm not even eating, really.

My GI explained I am giving my colon a rest because the Vivonex is processed in the small intestine rather than the colon. Why then continued diarrhea? How long can this go on? I wonder if any food at all would place me back on the 30 times a day? I just dread that. I was wearing diapers and not going out of my house at all.

I actually did make an appointment for a second opinion. It's not until October 26th, but I thought it might take longer to be seen as a new patient. That appointment is with another GI doctor. I do wonder about my immune system.

Have you ever seen an immunologist or infectious disease doctor? It sounds like you have other medical problems in addition to c-diff. By the way, thanks for your encouragement about a colonoscopy. I have experienced it before, yet I'm wary now because I may be compromised in some way. I guess that's exactly why I should have one again.

At least this time I don't think I'll have to drink the horibble "prep" stuff because there's not much in my colon to block the doctor's view. I am scheduled to see my GI early tomorrow morning and I'm going to ask for the soonest colonoscopy appointment available in the hopes of learning something.

I'll write again with any news.

Good luck to you, you have helped me hang in there.
Devi

[Bobbie]

devi,
I had C. diff. for 4 yrs. the first time (l993-l997) after taking Vantin for a sinus infection. Not only did it not cure my sinus infection, but I developed pneumonia, a UTI, & C. diff. Up to that time, I was very healthy except for allergies & an occasional sinus infection. Like you, I kept getting one infection after another which prolonged the C. diff. I was finally "cured" by the broth (although it didn't work the lst time but did work 3 yrs. later when I was deperate). Two years later, I got pneumonia & after a round of Levaquin, I had C. diff. again. This time "the broth" worked the first time. Last Nov., I had pneumonia for the 5th time & survived a Z-pak w/o C. diff. No one was more surprised than I was! (My pulmo. wanted to put me on Avalox but I refused because a pharmacist told me it was similar to Levaquin. I suggested the Z-pak -- altho. it, too, can cause C. diff.

C diff. propelled me from pre-menopause straight into senior status! Some of my health issues could be genetic or even (God forbid) from aging.

I've seen various docs. in all these years -- including a immunologist who told me my immune system was "a mess" & I would probably wind up on IVIG treatments the rest of my life. I didn't go back to him for 3 or 4 yrs. when he told me I had "improved." Go figure!!

For years, I tested positive for Lupus altho. I have Reynaud's Syndrome which can affect the tests. My last test was neg. for Lupus. Again, go figure.

Now, I've developed a tendance to UTI's & developed hives for the first time in my life. The derm. said it "could be" Macrobid -- but maybe not.

C. diff. has affected my life adversely, but I still travel, exercise & worked most of the time I had C. diff. (Fortunately, I worked across from the women's restroom). I just got back from the UK where my oldest son lives & kept up with my 4-yr. old & a 2-yr. old grandchildren for two weeks & then drove to Omaha for a wedding 2 wks. after we returned. Don't let this damnable disease defeat you!

My son also had C. diff. He first had it in l979 & was the youngest (4 yrs. old) & one of the first people ever on Vanco. -- up to that time it was strictly an oral med. He had C. diff. again when he was 10. There is some thought the tendance toward getting C. diff. could be genetic.

I am glad you are getting a second opinion. The most basis thing C diff. taught me is that you know your own body best. Doctors give an educated, experienced, expensive guess.

I was on a bland diet for awhile when I first got C. diff. and continued to lose weight. (was down to about 100 lbs.). I now eat "everthing in moderation; nothing to excess" & am 10 lbs. overweight for the first time in my life. (I am on a diet rather than change clothes size. I never thought I would see this day!)

Remember, most people emerge from a bout with C. diff. with few side effects. Only a few unlucky ones continue to suffer ill effects.

Some hints: Do try to avoid infections & more antibiotics. Memorize the location of every bathroom in every store you visit. Read FAQ about various ways to cope with C. diff. & Nutrition for hints. Docs. used to put people on a liquid diet to "rest the gut" but I didn't think this was "in" anymore. Remember, however, I am not a doc.

Again, I am glad you are getting a second opinion. If necessary, get a third. Be sure & ask the doc. how many cases of recurrent/relapsing C. diff. the doc. has treated. For info. on "the broth," call Cheryl, Dr. Allen's nurse. His phone # is in Doctors. Some have good luck with ID's.

Whenever I have to see a doc. (& sometimes I am able to stay away for months), I greet them with a cheery, "And now for the question that endears me to doctors everywhere. Do you wash your hands in between patients?" Some docs. are startled, some are irate, but they all then washed their hands. Have they never heard of Florence Nightingale? Hospitals & medical personnel are, however, becoming more "hygiene" conscious -- finally.

You will survive this. C. diff. is a disgusting, debilitating, & expensive disease that is still largely ignored in the US. Again, go figure!!

Good luck.

[jennie]

Devi,

Thank you for your very kind words. It is correct what you say, it is in helping others through this that one keeps working at healing onself. And to deal with the ignorance and denial of so many doctors, so that others can get through it, can cut to the chase, as it were, find the proper care and treatment. I will write to you in a PM, thank you for asking, I have had a long haul, am really quite well now. But it was terrible. Each of us has our own private nightmare of what this hooligan does to us. These days, every now and then a new post gets me to jump to it. Your experience (and Jayne's) have astonished me for what you have both been through. Doctors who do not know how to treat it, and what we go through as a result of that. (Jayne, I posted a question to you in one of the forums, think you have not seen it as yet?)

I am indeed in a very different time zone. 9 hours ahead of US west coast. Day for night, really.

Look forward to hearing how your GI visit went. It sounds that you are moving forward in seeking other opinions. And to say again, as Bobbie has also posted, it is a very good idea to see an Infectious Diseases specialist. While you are doing the rounds. Whatever else is going on, c.diff does not turn into other illnesses, the auto-immune ones, and not in this short-term. It is a nasty, mean infection, it tends to recur, and has to be effectively treated, no matter the immune status. Improvement and relapse happen to many of us: as the dose is lowered, it can tend to kick in again. The hope is that many on site have battled it for months, years even, and got through it, or adjusted to being on meds, or tried the experimental treatments.

Best wishes to you, please keep us posted.

[devi]

Bobbie and Jennie,

Say, do you both follow these postings? I'm so grateful to have responses, I don't want anyone to think I have ignored them.

Boy, you sure have been through a lot! Actually, my medical history is rather jaded, too. I have Hashimoto's thyroiditis - just a fancy name for auto-immune caused low thyroid. I also have a problem with my pelvic floor. I never even heard that term until a few years ago. I have rectocele and cystocele -a herniation of the bowel and bladder respectively. It's not severe, but it does interfere with basic functions. (I won't go into detail because this site deals with different difficulties).

Anyhow, my primary medical problem is the peripheral neurophathy I wrote of earlier. It came on gradually and no doctor has been able to determine why. Gee, that has a familiar ring to it.

The neuropathy causes excruciating pain inside the feet. But, the surface skin of my feet is numb to the touch. I take very strong pain killing medication that has resulted in some side effects that are unpleasant to say the least. It is this medication that is compromised by the Choestyramine. I have a chart with nine or ten boxes for each day to keep track of the prescriptions I need to take and when. This lasts from early morning until midnight.

The problem with numbness is what has resulted in my current mess. I had a slight sore on a toe. But, I didn't know it because the numbness preveneted me from feeling it. I only noticed once it had become infected. I'm sure you can fill in the rest.

A few years ago, a specialist told me that the results of the nerve tests on my feet were the worst he had ever seen. He also told me that the symptoms woud travel from my feet, up my legs to my thighs. Therefore, I could expect to be confined to a wheelchair.

I had a wheelchair made to the specifications of my body and purchased a large car that would accommodate it.

But, I went ahead and lost 105lbs. and started exercising. Eventually, I was able to do aerobic exercises for about 50 minutes 3-4 times per week and the wheelchair is collecting dust in my garage.

I would so much like to have a success story like that to tell about my c-diff someday -preferably soon.

I did see my GI doctor this morning. He ordered a CT scan and hoped my insurance would give authorization so it could be completed this week. I lucked out. My approval came through immediately and there was an afternoon appointment available for the test.

The test was completed in about twenty minutes. I had to drink some white glop one and a-half hours before the test. It tasted pretty bad, but it was something new after about a month the Vivonex. I also had an IV infusion of dye during the test.

I'm hoping to hear the results in a few days. It's hard to know what to wish for. If there is an abnormal finding, it might be serious. If there is no abnormal finding, what is wrong with me?

When I asked my doctor what could be going on with the negative lab tests I've had, he said I might have a strain of c-diff which is not picked up by current tests. Of course, I might not have c-diff at all, just "antibiotic related diarrhea". That sounds suspiciously like a cop-out.

So, I guess there has been some progress. Tomorrow, I will follow-up with my endocrinologist to see whether he can refer me to a GI doctor at UCSF. I also wonder at this point if my weight is so much lower than normal I might be getting diarrhea from a thyroid dose that is too high for me. I'm going to present this option to the endocrinologist. What if I really am better and could feast on something wonderful?

Wow, this is longer than I had intended.

You folks are an inspiration to me not to allow my spirits to get too low.

I hope you'll let me know who has read this because, as I said, I don't want to leave out anyone who has been writing to me so supportively.
Devi

[devi]

Jennie,

I posted a message addressed to you and Bobbie, but I don't quite know how this works and if you know I was responding to you as well. You have been so helpful to me.

I won't repeat the long history I wrote last time (to you and Bobbie, and anyone else who has been so supportive). I just want to update you and see what you think about my latest developments.

My GI doctor called last evening to tell me that there actually was an abnormality in my CT scan. I think he described it as a thickening of the wall on the right side of the colon near the top where it meets the small intestine.

Now, he wants to do a colonoscopy to help determine what that might indicate. It might show that I have developed colitis from the c-diff, or I might have had such a problem that predated the antibiotics. In that case, the antibiotics might have caused an activation of the colitis. Of course, he said, he could go in and find a sort of "false alarm" with no definitive diagnosis. Maybe, maybe. ,maybe! I wish I could get an answer to why I am not healing and what to do about it.

When I asked what would follow if I am found to have colitis, he said I would increase my Vancocin and Cholestyramine. I don't understand that at all. But, I'd sort of like to do that now and not wait. There has been a nurses strike at the local hospitals (good timing, huh?), so I don't know when I'll get in for my test.

For some reason he wants to do the procedure in a hospital rather than the usual endoscopy center he ordinarily uses. It has to do with the anesthesia he wants to use. Maybe, he wants to do more bioposies or other activities during the colonoscopy. I don't know.

But, I do feel this should have been done at least a week or two ago rather than just waiting. I hated hearing, "See you next week", each time there was no improvement.

Ironically, I have had some improvement the last four or five days. I go to the bathroom much less often and I no longer have really loose stools. So, what's up if I've developed colitis -- why any improvement at all.

How in the world have you dealt with this for so very long? It just drags on and on. How did you manage to eat through the active phase of c-diff? Didn't you have to run to the bathroom constantly? In my situation, I was completely out of control on chicken broth and Gatorade.

Have you ever been told you have colitis? I've read that this can happen, but I don't know what it will entail.

Anyhow, I have a family wedding coming up this weekend. It will be very difficult, what with my thermoses (sp?) for the Vivonex drinks. I'll have to make up several servings and keep them cool. The ceremony is about one and a half hours away and will last many hours. I hope I can use the refrigerator where they are keeping the food for the dinner. I'm also trying to figure out what to wear because I use Lidoderm medicated strips on my feet to help with the pain. I wouldn't have to if I don't need the Cholestyramine that blocks out the use of my pain pills. I don't know if hose will go over them and if my feet will fit into the shoes I want to wear. I guess I might need to simply wear a nice pair of black slacks and explain to the bride at some point.

The good thing is that my daughter will be visiting from New York for about five days. We are very close and she has been wonderful through all of this craziness.

If, I don't write again promptly it will be because of the business of the wedding and my daughter's visit.

As usual, thanks for any thoughts you may have.
Devi