15 days off of Vanco, but cramping. Relapse?

[cathy]

Hi, everyone! Thanks in advance for helping me out. I really love this group.

So, I'm freaking out today. I'm worried that I may be relapsing, 15 days after my last Vanco dose.

I got C Diff in April, while 7 months pregnant. I took Flagyl for 10 days, and it came back after 3 days off. Then I got on Vanco for 4 months, got C Diff 3 days after I got off (I tapered for a month). ... I did Vanco again, tapered, and felt iffy after 3 days off. I put myself back on Vanco, and did the pulse dosing thing, right up until 15 days ago.

Yesterday, I started to feel very crampy. I'm still crampy today. My stomach hurts. My colon hurts. But no D. No fever. No nausea. Just bad cramps.

I've never altered my diet. I eat what I want except on my bad C Diff days (which are the first 3 days of my relapses). On the bad days, I eat nothing or a BRAT diet.

Could the foods I'm eating be causing the cramps? Or, can I be relapsing 15 days after my last Vanco dosage?

I'm soooooo worried.

Cathy

[anlockwood]

I can tell you I have been down this road multiple times in the last few months and also last year during my first bout. It can definitely be a part of the healing process to feel this way. Last year the pain I got after c diff was the worse part. Sometimes it was so intense I ended up in the ER. All of it came back to post infectious IBS. I would rarely have D with it and most of the time it was just the pain and cramping. It felt as though my colon had been used as a punching bag. After my first bout it took about 3 months and things very slowly started improving. At around 9 months it began to disapate completely and rarely came on and at a year I was almost back to normal although I still watched what I ate. I waited till I hit the 90 day mark last year and took a pain pill once a day on the bad days and it would always calm my stomach. Some others swear by Xanax although that should be used carefully as it can be addicting.

Try not to worry too much and I know that is easier said then done. I have burned so much energy on worrying that at this point it is more frustration of just wanting to know what the cause is. On the bad days I never know what it is, c diff or IBS or post issues from having my gallbladder removed recently. I have had some really bad days these last few but I don't worry about them. I know if I am relapsing that I will get meds and get to feeling better in a few days and find another way to beat this.

Please know that you will beat this! The fact that you have made it 15 days already is amazing! That alone should be celebrated. I am just a few weeks ahead of you at 28 days and I think that is a huge accomplishment so I celebrate that. We have to celebrate the little milestones on the long journey to 90 days. Enjoy the good days to the fullest and forget c diff every existed if even just for a few moments. My favorite thing to do on the good days is to take my 21 month old son to the mall and just let him run from end to end ( he does too for 45 minutes straight). I chase after him and people always comment oh you must be so tired and my thought is always nope just so blessed that today is a good enough day that I can keep up!

Amanda

[cathy]

Thanks, Amanda. I love hearing that there's hope yet. I feel hopeless with this stupid disease!

I went ahead and took two Vancos last nite b/c the pain was so bad. Now all of the pain is gone. What does that mean? Were the spores opening up and I zapped them with the Vanco? Or, was it IBS that was going to go away on its own? Ugh. I hate not knowing what my body is up to.

I'll be happy when I'm 90 days Vanco-free.

Congrats to you for your 28 days of being med free. I'm jealous!

[anlockwood]

Cathy,

I put an extra huge caution at taking vanco like that. It can be very dangerous as far as possibly causing a relapse when you were only having normal healing symptoms. When you take just a few vanco it also lowers the good bacteria count and then you stop taking it again this creates an opportunity for the c diff to rear its ugly head. I know none of likes to be sick or even dream of a relapse. I know this better then anyone. On my last relapse I was on vanco 125 4 times a day. The day that I relapsed and got the fullblown D I was hospitalized because I was so sick that fast. I got full blown D by 1 Pm and was hospitalized by 8 Pm. Couldn't keep a sip of water in so I know if I relapse that it immediatley will leave me violently ill but I still would not jeopardize the healing by taking vanco here and there. Give your body a chance to whoop this bug.

Sincerely,
Amanda

[Vikingjeff28]

Tough to know at times. I am cramping pretty good today as I am now down to one vanco a day, see my GI Friday. I think mine may be from Ibuprofen and one percocet I had to take because I hurt my back and could not move much at all yesterday. It is a little better today as I am working. I have good friend at the gym that lifts with me that just got diagnosed with lung cancer in both lobes, surgery next week. This guy is 52, in phenomenal shape(I mean ripped) and has never smoked and is fanatic about working out so he is taking it very hard at the moment. Pray for him, his name is John and is nicest guy in the world. Thanks guys.

[Nancy1]

There are definitely a lot of things that are worse than cdiff. I will keep John in my prayers.

[cathy]

Poor John. No one deserves cancer at any age. That totally sucks. Cancer runs in my family, killing many relatives in their 20s and 40s, so I am very thankful that I only have C Diff. I have to remember that. So, thanks for putting things into perspective for me.

I get sooooo depressed about this C Diff that I forget how good things really are. Besides relapsing every few months, and now cramping a bit, everything is fine. I can have wine and pizza tonite, so how bad can things be, right?

[fire7163]

Got to jump in and agree 100% with Roy and anlockwood....Do not adjust your vanco doseage with out talking with you Doctor first. Your GI system is a very complex and finely balanced system. Randomly increasing your vano could very well be the same thought process as using gas to fight a fire and with the same results. C-Diff is a spore that will manifest itself if given the right conditions....not a thinking creature lying in wait.My thoughts are control the conditions and you control the C-Diff.
Your cramping, at least in my case was normal and easily controlled with some Nulev or Bentyl.

You've got to accept the fact that there is no overnight cure for C-diff and it's going to be a lengthly process...just take it 1 day at a time and don't panic....you will get over it.

Fire

[cathy]

In my defense, I did the pulse dosing, down to one Vanco day a week. Then, after two weeks, my bottom half was feeling "iffy" (as Lauren put it in her directions), so I was set to take a full day's dose again, as recommended. But, after a couple of Vancos I stopped b/c I started feeling better. I was ready to take a whole day's worth, but stopped. I hate taking Vanco if I don't have to. ... So, I'm thinking the cramping was IBS, or my body healing.

I have two GIs and they're both stumped. They don't believe that C Diff can last this long. So, I don't really trust their opinions. ... I self diagnosed myself with C Diff (confirmed with a positive test in the ER), after 4 doctors misdiagnosed me as a hysterical pregnant woman. ... So, again, in my defense, I did what I thought was right without calling my GIs about some cramps.

And I certainly don't think there's an overnite cure for C Diff, or that Vanco is a pain killer. I've had it since April, with 2 horrific relapses, while pregnant and after a C section ... and I won't bore you about my 5 kidney stone surgeries, one without anesthesia, during my pregnancy which caused the C Diff in the first place.

[anlockwood]

Cathy,

You have no reason to need to defend yourself, that I assure you. Everyone here has to make their own choices for their own bodies. I hate the internet for the reason that it doesn't convey emotion. I want you to know that Roy, Fire and myself are only truly saying what we are saying because we so desperately want you to recover not because we want you to feel shamed or like you did the wrong thing. Please accept my sincere apology if that is not how it came across.

I think the point we were making is that you are better off not to take the vanco then to take a few here or even a full days worth. With Lauryn's pulse dosing the most you go is a week in between pills. With you being two weeks out if you were to be having a fullblown relapse, unfortunately a days worth of pills would not kick it and if it was only IBS then our concern was you would be doing more damage to your good bacteria. Also the fact that you are able to eat those foods is wonderful but do expect off days especially with those types of foods. Many people have noticed they have no IBS on vanco and then once they stop they do. I have no idea why this is but is has to do with the healing process of our good bacteria trying to recover over the bad. Did you know there is over 1,000,000,000 bacteria in every ml of fluid in our large intestine? It is quite the war with that many bacteria vying for a home.

Sincerely,
Amanda

[Vikingjeff28]

I can tell you that what really helped me the first couple of times I am now taking again, Colestid, in pill form. I have been spacing it out in between vanco doses and now that I am down to one pill a day easy to work in. I have not had D in 7 weeks. I still have cramps and the mornings are the worst for that for about an hour then it gets progressively better, no idea why but seems to be common on this board. Anyway, GI trip Friday for follow up as I only have 3 vanco left. Plan is to test again in about 2-3 weeks. I am going ot ask for vanco script so if I relpase I can medicate quickly and then call him, that controls it well. I am also going to ask to see if he would be willing to do stool infusion here if it comes to that down the line. Our vendors are bringing in all sorts of Christmas goodies and Praise the LORD I can eat them this year. Last year all I could eat was pain meds thru an IV and Ensure. I will keep you posted on my progress.

[cathy]

Thanks so much for the info. I was really feeling dumb for freaking out and taking Vanco the wrong way. I really thought I was just doing the pulse dosing as recommended. The last thing I want to do is cause a relapse.

I'm glad to hear that the cramping may be part of the healing process. I had no idea so many of us were cramping up, esp. in the mornings. Weird.

I'll try no to panic as my body gets back to normal. Sounds like I might be on the right track, finally. Amen!

[fire7163]

Ditto with Roy and Amanda......

It sounds like you need to educate your doctors or find a new ones. Refer them to this site. Most Doctors are amazed once they start reading.

Fire

[cathy]

Roy, I'm not sure if a snack would help. I have the cramps on and off all day, but they seem worse in the mornings. I suspect my morning coffee and 3-mile run doesn't help the situation. Those activities just turn up the volume on my cramps. I almost crawled during my morning run today. I was hurting so bad.

[cathy]

Roy, if I don't run, the C Diff wins! :)

Seriously, I've missed so many days, just hanging out in bed with my C Diff problems and my horrific pregnancy, I just feel that I'm normal again if I run. I just want to be normal again. ... But, if it hurts really, really bad, I'll stop. So far, I've been able to tough it out.

I asked my GI if I could run a half marathon in Miami in Jan, and he said I shouldn't b/c of C Diff. He's afraid I could get dehydrated b/c of the C Diff not allowing me to consume enough fluids. So, I won't be doing that. I guess I have my limits.

Thanks for caring. :)