Sick an tired!

[Christina]

Just saying I am tired of this C-diff stuff. Please, please, please go away stupid bacteria and leave me alone. I had CT scan and bloodwork last week and all turned out ok. Aaahhh......but I am still stick! I am playing around with Vanco from 250's to 125's and back to 250's. Whatever i feel like doing at the time. It's all just a game and I am not winning. I was put on a no carb, no sugar diet no and I am sooooo hungry. I am sure I will get colon cancer and high cholesterol from all of the meatballs I am eating. Anyways, I just needed a place to vent with peole who unerstand. I am trying to find the humor in this, but it is just not happening.

I hope everyone has a great weekend and is feeling pretty good despite this thing. Hang in there and do something for yourselves even if it is something small. :D

[karol123]

Christina, how long have you been battling c diff. i do want to say i am you have to go thru this (me too).

[Fire2]

Christina...It's been a while since we've talked. I know exactly how you feel, and it's a dark road with a bunch of bumps along the way. Did I understand that are you self medicating with Vanco ? I thought that there was no end of relapses until my Pharmacist suggested liquid Vanco for the cost factor. My GI fully bought in and stated that he thought it hit the C-diff harder by bypassing the Digestive process. It worked......I'm not saying to you that I didn't and don't still have "off days". It''s not perfect but I'll take it any day. We all have to remember that C-Diff is a serious systemic infection of one of your body's most complex and finely balanced organs that directly control your immune system. It will take some time for your body to regain control. So what to do ??? Start to exercise lightly at first and slowly build back your strength at the same time rebuilding your health. Find some good music and put on the walking shoes and walk, get lost in the music. Your gains will be small at first, but keep at it and keep a journal. You will be shocked at your progress. You can either be a victim of C-diff or a person who choose to fight and not going to allow it to control her life. It's your choice and it's not easy...If you choose to fight...I've got your back.

Fire

[beth22]

I know how Christina feels. It's one thing after another. You think you make some progress and then you're back where you started from. It's really hard to keep a positive attitude. I am having bad symptoms right now and the c diff is testing negative. A few weeks ago I tested for a different infection, which supposedly cleared on its own, but perhaps not. Then there are gyn problems, neurologicial problems, and the list goes on. The problem is that supplements that I am supposed to take for some of the other conditions are impossible to take with the GI problems. It's very frustrating indeed!

[karol123]

well fire2 i sure like ur attitude and when i'm feeling good like i have been since i started vanco it's of course easier to try. i look back now and realize i do have alot more energy, and i've been lifting light weights, now that the weather is finally starting to imprvove, trying to spend more time outside. i am on my second relapse, vanco taper. tomorrow is my last day of 3 times a day then i drop to twice daily. when you are on vanco, and feeling well, it's hard to imagine going through it again. i really feel for you christina and beth. i was wondering beth if you'd had any type of ibs, or intestinal, etc. problems before the c diff. it seems a lot of people here say they develop some sort of ibs after recovering from c diff. i will keep everyone posted on my progress, yes, i'm going to say "progress", and wish good health to us all.

[beth22]

No, I can't say I had IBS before the c diff. I used to be C in fact. Used to eat salad almost every day, fruit, raw vegetables - all the things I can't eat now. When I was in college, I had a "nervous stomach" - mostly indigestion type symptoms, but I think it might have been stress. I kind of went from being able to eat anything to being able to eat a very limited menu thanks to c diff. I also bacame lactose intolerant.

I was diagnosed with SIBO, which could explain my symptoms. I just have to figure out if and how I am going to treat it. I can't really keep this up much longer. The lack of vitamins and malnutrition is taking its toll on my system. I will post what I do and if it worked. I am probably going to take Xifaxan when I get back from vacation and hope it helps. My doctors want me to follow with a stool transfer, so I guess I will do that again and hope that it works 100% this time - actually, I would settle for 90% :)!

[Christina]

I have had C-diff since 2005. I twice had about a year and a half between relapses (or who knows what to call them anymore!). First time I had it was a year and a half with 13 relapses. Now it just comes back on it's own whenever it feels like making my life hell without antibiotics. I'm on vanco for it again and have also been diagnosed with SIBP. I've been put on a no carb, no sugar diet and it is killing me. I am so hungry.Fire I do excercise and keep very active. I'm just tired of it all.

Oh Beth, my husband picked up the Xifaxan and just the smell makes me sick. Those big brown smelly pills! I don't think I can or am going take it. It is freaking me out!!!

[beth22]

When they ran the strain on your c diff, did they do a sensitivity test to see if it was sensitive to Xifaxan? No all strains are. Mine apparently is, so I could take it, but it goes right through me. By the 3rd day I get bad D. Not c diff, just D, but very severe. I don't know if it is worth taking either.

[Christina]

They didn't check. My Dr. was out of the counrty at the time and thankfully called anyway as I had emailed him. I was still on the Xifaxan when I relapsed. It was on day 4 and I previously had 2 weeks of Vanco. I think it was the worst relapse I had ever had. It would not stop and actually my Dr emailed the next day to check on me and thought he was going to have to add Flagyl to the Vanco to stop it. I had excessive bleeding and d about 15 times a day. It finally stopped on the 2,000mg and I had to stay on that dose for a couple of weeks before dropping down again.

[beth22]

That's interesting, because I tried taking Xifaxan on two occasions and on day 4 got D and stopped. I didn't relapse with c diff though. Then I took a few weeks worth of probiotics for the SIBO in hopes of getting rid of it, but it didn't. The SIBO specialist told me I had to take high doses of Xifaxan for ten days. I made it through the ten days and on the last pill got D, but only a couple of times. Then the doctor wanted me to do another round, starting about 4 days later. I did and got worse D than with c diff with B in it. I thought for sure I had relapsed, but I hadn't. It was just from the Xifaxan - I guess it is really harsh on my intestines. I didn't take any more and it went away. Not sure I want to do that again, although I did take it as a chaser to vanco later on when I did actually relapse with c diff, after having taken Cipro. It made for looser stools, but no D. I only took one pill either 2 or 3 times a day for 5 days though. Strange medication. I guess if I take it again, I will try to take the normal dose and not a double dose as before. More is not always better.

[Christina]

Fot the SIBO I am supposed to take 550mg twice a day for 14 days. That is what the script says. I'm not taking it though. No way!

[beth22]

I don't blame you. They also treat Sibo with Flagyl sometimes. The problem is with SIBO, that they don't know what particular bacteria are in the small intestine. Xifaxan may work, but if those particular bacteria are resistant, then you are just wasting your time taking it. There is no way to ascertain without going into the small intestine. A stool culture doesn't show it unfortunately.