Suezer-Case History

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Suezer
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Joined: Tue Jan 20, 2009 4:06 pm

Suezer-Case History

Postby Suezer » Fri Apr 03, 2009 11:10 am

In early December I took Augmentin for Bronchitis. After the medication was finished I was still feeling as if I was fighting something so I began to take Omnicef in early January. By the 4th day I was feeling pain above my naval area between my ribs. I looked up the side effects of Omnicef and quit taking them. The next evening I awoke to severe pain in my abdomen,it came in violent waves and it was increasingly difficult to relieve myself but eventually the D hit. After some hours I went back to sleep, the next 2 days seemed fine, until I went back to work and the cramping and D started all over again.
I called my Dr. and told them about the side effects of the Omnicef I had taken, also that I had been on Augmentin. I went to the walk in clinic where I was seen and tested positive for C Diff. This was on January 21.
I sarted on Flagyl 250 mg 3X a day for 10 days. I felt VERY ill while on that medicine,but it seemed to stop the D and other C Diff symptoms. At the end of the 10 days,when the Flagyl ran out, I still felt "raw and chewed up inside" At this point I was still on a very bland diet,consisting mostly of oatmeal,apple sauce,yogurt,ramen noodles. I started taking Saccharomyces boulardii + MOS,drinking Kefir,and danactive.
5 days later I relapsed and tested positive for C Diff toxins. I was off work the entire time already, and was put on a 2nd course of Flagyl,same dosing as before.
Again I felt very sick on this medication, but I took it all 10 days as prescribed. I continued with a bland diet and taking my pro biotics. I still did not feel a cure had occured. Again after the 10 days of Flagly..this time 7 days later, I relapsed on the 2nd day back to work.
I called an on call Dr. who prescribed (finally) Vancocin. With the very first pill , my symptoms stopped. I had only a LOT of cramping and non odorous gas with the first dose. After that I began to feel better and better.
I was reffered to an Infectious Disease Doctor, and I was very relieved when he prescribed the following dosing regimen:

250 mg 3 X a day for 2 weeks.
250 mg 2 X a day for 2 weeks
250 mg 1 X a day for 2 weeks.

Tomorrow I will begin the pulse part of this treatment. I will take 1 pill every other day.
Being on the Vanco, has allowed me to finally start eating normal foods, and gain back some of the weight I lost. I lost 12 lbs very fast in the beginning. So far I have gained 5 lbs. back.

I have had some "iffy" moments on my taper, but with the help of this site, learned that iffy moments are normal. And I have not had any severe symptoms since my last (2nd) relapse.
I have been back to work for almost 5 weeks now and my strength is very good.
I will update again in the very near future.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Postby Suezer » Fri Apr 10, 2009 12:01 pm

It has been 1 week since I started to pulse the Vanco. I take 1 pill every other day. I have noticed that on my "no pill" days I actually feel really good! Which was surprising to me. My day of taking the 1 pill, seem a bit cruddy, whether it is feeling fatigued, or having some lower back ache.

Bathroom wise things seem to be just fine, nothing worrisome to this point.

I continue to eat fiber 1st thing upon waking. A sort of porridge that I came up with, that I eat 3 times a day regardless of how good I may feel.

1 pack of instant plain oatmeal (cooked)
@ 3 Tbs. unsweetened applesauce
@ 4 oz. Kefir
@ 1 Tsp. Apple Cider Vinegar

The good thing about this mixture is that it contains Fiber,Vitamin C,many live cultures of good bacteria,and some acidic content.
Every thing in this porridge is benefitial. The oats and ACV feed the good bacteria in the Kefir, and the apple sauce adds vitamin C and aids in bulking up stool,along with the oatmeal. I have eaten this since early on, and have had practically no issues with soft or loose stools,outside of the 2 relapses that I had.

I also take 1/2 of a fiber choice tablet every other day.

Something I have researched alot,and tried,is taking Folic acid after consuming any alcohol.
For those who have had issues with drinking wine or beer. Alcohol seems ok for me, in moderation,(1-2 beers or so) what I have done is followed any alcohol consumption with a Folic Acid suplement, as alcohol breaks down our Folic acid. Folic acid has many benefits,one of them being that it helps our good flora do its job of protecting our digestive lining,when alcohol is consumed it can cause the good guys to not be able to do their job, thus some people end up with BM issues following alcohol consumption.

Next week I will begin to pulse 1 pill every third day. I will update again during that time.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Postby Suezer » Tue Apr 28, 2009 2:07 am

One and a half weeks into the 2nd pulse phase of 1 pill every 3rd day, things began to get "iffy" more cramping,more frequency, lower back pain,and feeling really off.

Finally called my ID who put me back to 1 pill every other day for a week or so. At the end of that if things are settled down he may try adding another medicine or a different one, he did not indicate what it would be,only that it would really knock the C Diff down.

I will update sometime beyond that point.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Postby Suezer » Fri May 01, 2009 11:28 am

It is incredible how much better I feel after pulsing every 3rd day for 1.5 weeks (which made alot of symptoms resurface,so thinking some spores came out to play/hatched) went back to 1 pill every other day since Tuesday and things have just gotten better. Bathroom wise things even seem to be normalizing more so than in the past months,which I am really hopeful that this is a good sign.

Still taking Jarrow brand of Saccharomyes Boulardii + MOS 2 x daily. I cut the oatmeal back to once daily,drink V8 frusion with Apple cider vinegar (1 tsp) mixed in. Eating 1 yogurt daily and drinking Kefir and Danactive.

For 2 days I have had no rumbling, no lower back pain. A few fleeting pains that really dont concern me. Consistency and frequency have normalized.
State of mind has improved, and am very hopeful to be nearing the end of this nightmare.
Had to pick up more Vanco pills, only bought 8 of the 30 pill RX..$53.00!!
Hoping that is the last I will need of it...
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Postby Suezer » Fri May 08, 2009 3:32 pm

Since I have been doing so well @ the 1 pill every other day, the Doctor wants me to try to go back to 1 every 3rd day again.

Considering how well things have gone in the last two weeks I am hopeful that I will handle this pulse regimen better than the first time I tried it.
I am really eager to be free of this.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Postby Suezer » Wed Jun 24, 2009 10:03 pm

I am currently pulsing 1 250mg Vanco every 3rd day. I spoke to my ID Dr. today and he said to go to 1 Vanco every 4th day. I told him the only thing I have been experiencing is low back ache and fatigue, but he didn't seem concerned with that.
As the pulses get longer I have to admit my fear does grow,we all know it too well. I have been on Vanco taper/pulsing now, for 17.5 weeks.
I just pray this works.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Postby Suezer » Tue Aug 11, 2009 2:08 pm

Well here I am 7 months later, when I tried the 2nd time to go down to 1 pill every 3rd day I did fine until the 2nd week, I had very bad burning pain in my colon and tons of lower back pain, so my ID Dr. advised me to go back to 1 Vanco every other day, and stay at that dose for at least a month.

So here I am 5 weeks later, ready to try again. I feel absolutely great, so I am hopeful this time it will go well. I will take 1 250 mg Vanco every 3rd day for two weeks. Then move to 1 250mg Vanco every 4th day for 2 weeks, then stop.

Everyday especially in the past 2 weeks I feel closer to my old self than I have since this began in January. Please keep your fingers crossed for me, it has been very a long road!!
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Postby Suezer » Sun Dec 06, 2009 8:52 pm

Back in September I attempted to stop the Vanco, but got 4 days off and relapsed. So I went on full dosing (1 pill 3 x day) for 3 days then back to 1 every 3rd day for some weeks.

I then moved to 1 pill every 4th day last month. Things were going well until this morning I relapsed. I have NO real idea why this happened, however, on Friday my employer put some of us down to part time-including myself, and I was very emotionally upset over this that whole evening to the next day. I dont know if that caused it (it used to cause my UC to act up if I had a period of high stress of emotional upset) I missed work today and the on call Dr. put me back to 1 pill 3 x a day until I can phone my ID tomorrow..
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Re: Suezer-Case History

Postby Suezer » Sun Mar 06, 2011 1:04 pm

I regret not having been to these boards in some months, life took some unexpected turns and really things were crazy for the last year.
Moved 3 times in less than 5 months, the last move was right before Christmas. I can say that things have calmed down quite a bit,finally.


Just a small update:

I am still pulsing Vanco. 1 dose equivalent to 250 mg every 3 days. I have been taking medication for C Diff since January of 2009, and pulsing Vanco since April of 2009!

I have had no problems since @ November 2010, I feel completely healed of this beast, yet my Dr. tells me "If you are feeling well, stay the course."

He has given me the ok to try to extend my pulses to every 4 days, I have yet to try it, the main thing that is holding me back?- The expense if that pulse does not work and I get symptoms again. I do worry at times about the possible risks of taking Vanco for such a long time...

If anyone has any questions,feel free to send me a private msg at these boards, I will help if I can.

*Remember, 1 day at a time. This illness will test you in alot of ways, but you will feel better eventually.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Re: Suezer-Case History

Postby Suezer » Mon Apr 09, 2012 11:48 am

Pulsing Vanco since February 2009, 250 ml liquid Vanco every 3 days.,no issues. Then out of nowhere..relapse..D..M..B..pain.April 2,2012. Back on the Vanco train. There are many trials in the works for a Vaccine. This is something I want to see happen soon for all who live with this.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Re: Suezer-Case History

Postby Suezer » Fri Jun 15, 2012 10:58 am

I was trying to cure my last relapse of C Diff with limitted Vanco. My ID suggested at first I try going on full dosing for a few days then back to the pulse. It was not working, I had only 4 doses of Vanco per prescription at one point, and kept refilling it, due to mini relapses, when that prescription ran out my regular Dr. was hesitant to refill it, her nurse even asked me how I was taking the Vanco and I said "orally" she said to me that they only have IV Vanco for me and they could not refill it..LOL sorry but I could not believe how uneducated this nurse was. So.. I sent my ID an e mail and explained to him that I was not getting better, and that my Dr. was hesitant to refill, and her nurses know little of what they were doing and I needed his help so that I had enough Vanco to actually knock the C Diff down so I could hopefully get back to a pulse dosing regimen. He was awesome. He called me and said that he would make sure I had enough Vanco. He also told me that he has not forgotten about me and that there are things in the works like hopefully getting fecal transplants in our area and that he would keep me in the loop.
He told me to take 3 doses of Vanco a day for a month. I am on week 3 and actually feel like it is knocked back down. Now I am just trying to decide if I will taper down or try the pulse that is posted in FAQ. Either way I am just grateful to my ID who knows so much about this illness.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Re: Suezer-Case History

Postby Suezer » Fri Jan 20, 2017 12:41 pm

Hello. I have not been to these boards for years, that does not mean I was cured or otherwise. After 7 recurrences of this illness, I got fed up and so did my ID Dr. he put me on a maintenance schedule of Vancomycin and I basically stayed on that and got on with life. In the last year and a half I was taking 1-2 doses daily, all along knowing that although I was not relapsing, I was not helping the root of the problem- a lack of healthy gut flora to keep the C Diff spores from hatching. Back in June of 2016, I was referred to a GI Specialist in Milwaukee, only 30 minutes away. He saw the long history I had with C Diff and agreed to do a fecaL transplant, when I was ready, all I had to do was make the call. I was planning my wedding at the time and have changed insurance three times. Once the wedding took place, and after the new year, and with new insurance- I made that call.
~
On January 19th of 2009 I was diagnosed with C Diff.
On January 19th 2017- Just yesterday and 8 years later, I had the procedure done via Colonoscopy. The donor material was from an anonymous donor via OpenBiome.
~
I can not say for certain that it worked, as we all know that time will tell. I can tell you that today upon waking, although I have gas type pains, I have more energy than I have had in 8 years.
I did lose some of the "slurry" after resting for 30 minutes, I was told that this was normal and that everyone loses some of it upon waking ect from sedation- however I was able to hold the rest of it for at least 7 hours.
The first things I ate when I got home- Pistachios, triscuits and spaghetti. I had raisin bran for breakfast. It is important to eat things that will feed the new bugs.
I have not taken Vancomycin since Tuesday, this is actually the longest I have been off of it in over a year, and I hope that I never have to look at or swallow Vancomycin again.

Time will tell.
If anyone would like to msg me about any of my experiences, feel free to do so. I will update again in time to report my progress post-FMT.

Healing thoughts to all.
Hoping for a cure.

Suezer
Long Time Contributor
Posts: 411
Joined: Tue Jan 20, 2009 4:06 pm

Re: Suezer-Case History

Postby Suezer » Thu Feb 16, 2017 11:03 pm

1 month post procedure. Doing well. I had some scares in week 2 with M and pain..did not panic. I know that 4 things need to happen all at once if it is relapse..M.B. Pain. Urgency. Thankful this has not been the case. I was never a WD case. I had severe colitis from the get go every time. I could never go off Vanco for more than 4 days. Here I am 1 month..medicine free. I can not eat vegetables yet..wont try. I ate popcorn and it was bad BUT I am well. I drink kefir daily and eat raisin bran and bananas daily. Things I never tried before. I have a follow up on March 29. If I am still well by then, perhaps I will be able to claim success. I wish I had done FMT years ago. It is easier to get FMT now, if you are new to C Diff and reading this, dont be scared by my story. Just look into FMT if you keep relapsing. It is a simple answer to a complicated illness. Because of OpenBiome and an awesome GI I was finally able to come off of Vanco ( maintenance doses) after 8 years.Fingers crossed.
Hoping for a cure.


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