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Posted 10/9/2019 12:05 PM (GMT 0)
Ok bull thanks. Don’t get me wrong, I have certainly improved a lot since a week ago so I know the Antibiotics are killing it, but as I been unwell for so long, it’s just so frustrating it’s still lingering. I guess I just got to take each day as it comes and hopefully start seeing less and less symptoms as the days go by. Atleast I’m actually holding food now.
Posted 10/9/2019 6:14 PM (GMT 0)
Just wanted to say I hear you on the c-diff. I have been sick for 7 weeks, luckily no hospitalization but likely should have been. My very experienced UC doc kept just assuming flare which is VERY frustrating. I have been on the meds for 2 days and already have formed stools, my stomach pain is down to a 3, and I am getting my energy back. Feels like I am waking up for a horrible nightmare. Make sure you take the meds on schedule(every 6 hours!) so that it stays in your system. Quick question, are you taking the probiotics while on the meds?? Hang in there. This illness is the worst and so sorry you had to be hospitalized. Horrible that docs don't catch this as even on the mayo clinic website it says UC patients are way more susceptible to c-diff so why don't they test for it??? Looking into a new "specialist" as I am really angry....
Posted 10/9/2019 6:26 PM (GMT 0)

straydog said...
Jen, the Vanco should not cause a flare. When I was released from the hospital with a script for oral Vanc, my dr told me to buy OTC Floraster for the probiotic.

It's contagious, use bleach in your home, not antibacterial soap or cloxox wipes, but bleach. Get some disposable rubber gloves to use with the bleach. Use paper towels to dry your hands with. You can read Geezer's thread above & I think Sara's on what to do at home.

Yep. Vanco. won't make you flare. I was in a solid 1.5 year remission after I cleared my c diff. up.
Posted 10/9/2019 6:31 PM (GMT 0)

*Jen* said...
Thanks for all the responses. I use walgreens and like the doctors in the bay area(overworked and too busy to really help you) I don't think I would trust their opinion. I will do some research online. I seriously feel like I have to be my own medical provider in this world. I need to switch my pharmacy, primary care, and UC specialist. They all have failed me(walgreens asked me if I could wait until tomorrow for my anti-biotics...ummmm...I have been sick for 7 weeks. Call around and find my medicine!!!) Rant over. I am really not that picky of a person. I swear, just can't believe I have been sick for so long with no help.

Your GI doctor sucks if she or he didn't test you for c diff. to begin with. Next time request stool tests from the start. I've had numerous GI docs over the years and all of them do a stool test at the first sign of symptoms. Not suggesting probiotics isn't a big deal. In my opinion, over-the-counter probiotics do nothing. And yeah, it's fun having to be our own medical providers, isn't it? I feel the same way most the time.


OP: How are you doing? Any improvement? The prednisone would only "slow down your diarrhea" if this was a UC flare. It won't help c diff. and could make it harder to treat since it lowers your immune system. Not quite sure why your doctor prescribed that. Are you really taking both Flagyl and Vanco.?
Posted 10/9/2019 6:37 PM (GMT 0)
If c-diff won't cause a flare why is my GI having me take double dose of lialda for 6 months?? I am so done with her.... Been with her for 15 years and she is a specialist at UCSF. Over it. I have a call into Stanford and praying that she is accepting new patients. I am easy UC case. Controlled my medication and haven't flared since my child was weened(the hormones of pregnancy, giving birth, weening, etc. cause me to flare). I was SOOO sick, but am not a whiner so she just let me go. Over it!

Thanks for the comments Sara. I don't know what I would do without this board.
Posted 10/9/2019 6:48 PM (GMT 0)
Jen, no I’m not on the probiotics. I’m basically seeing mixed form/ slushy stools at the moment and still going toilet 7/8 times. Although certain times I am going , not to much comes out so I think the Stomach just emptying slowly. I’m certainly nowhere as bad as I was and the Antibiotics are clearly doing something, but just taking a little while to shift. I still don’t feel comfortable going out yet. Just want this nightmare to bloody end so I can get my life back on track. Hopefully I’ll start to see signs of the infection going by the weekend. I have only been on the Vac for 5 full days now
Posted 10/9/2019 6:55 PM (GMT 0)
I don't know if c diff. itself can cause a flare, but I have not read anything about vancomycin causing a flare. I just know I personally got into an amazing remission after those 3 months on tons of antibiotics (for campylobacter and then c diff.). Seems a bit odd your GI would up your Lialda preemptively. Good luck and I hope you get in to the doctor at Stanford! You're welcome!
Posted 10/9/2019 7:04 PM (GMT 0)
Jen, I found this in a study saying c diff. could cause a flare:

"Though it is still not clear if C. difficile causes IBD, it is understood that C. difficile can cause an infectious colitis superimposed on IBD, or may precipitate an IBD flare leading to simultaneous inflammatory processes, and it is nowadays considered a risk factor for IBD exacerbation."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837256/

But I don't know if I would increase my Lialda unless that actually happened to me personally.
Posted 10/9/2019 7:53 PM (GMT 0)
My symptoms dramatically improved at 13 days....with only one more day of Vanco to go. Luckily, that's all I needed, and no return so far (almost 3 years).
Posted 10/9/2019 8:04 PM (GMT 0)
Thanks for everyone sharing their experiences. I learn more from all of you then my GI who sends me cryptic 5 word emails instead of talking to me about this. I am going to go back on my normal Lialda dose. I am feeling a million times better, haven't had a flare in 10 years, and have no idea why she would want me to increase for 6 months. Seems crazy.
Posted 10/9/2019 10:59 PM (GMT 0)
Sarah, Jen, and everyone....Well, sorry for dragging this on and on, but wanted to pass along some info I got today. My doctor wanted to check on my progress...a great doctor indeed!!! Sarah, you were right about the prednisone. She told me she initially gave it to me because she hadn't received the test results and gave me prednisone because she thought it was my UC flare. Today, she cut it from 20mg. to 10 and will begin taper in a few days. Also, Jen..be patient with C.diff...so I was told. I've been taking Vancomycin since last Friday... and yesterday, I didn't have a fever!!! Still have diarrhea but no as much urgency. No visible blood or 'slime'. aaaack!!! Doc told me I'm on the way, but it will take time so take ALL of the Vanco. she prescribed and two days before I run out, call her to let her know if the diarrhea has quit totally. If not...she will prescribe another round, but doesn't want to if it isn't really necessary. She also told me, she had intended to admit me into the hospital this week if I hadn't seen any change at all. WHEW!!! Hadn't expected THAT. I HATE hospitals!! I think that's where I picked this mess up...but I don't really know. She told me as you guys did....bleach is the only cleaner that will kill it. I thought I'd been doing such a great job by using gallons of alcohol based hand sanitizer. Like you guys told me....good washing with hot water and soap is the best thing to practice...and clean EVERYTHING with bleach, which I've done. LOL Sorry for the long babble, but I've been messing around with this for so long....I didn't realize just how dangerous C. diff can be. Thanks again all...be safe, stay as well as possible and thank you for the comments and suggestions, they ARE appreciated!!
Posted 10/10/2019 7:48 AM (GMT 0)
Really struggling here guys. Honestly feel like I’m never going to get better again and my life is ruined. When will this bloody thing go ? Like I said previously, the stools have improved in a way so I’m not having chronic Diarrhea as such, but the stools are still very mushy/ mixed solid. I am still going to toilet 10/12 times a day so still can’t do anything but stay at home. I’m eating better but obviously due to eating better, my stomach is obviously pushing more food out. Nearly 2 months now I have been unwell, I am honestly fed up. The VAC I’m taking I’m on the 6th day now. Does it really take long to get this horrible C-Diff out the system ? Please someone reassure me I am going to get better because I see no light at the moment. Have I improved a little since being hospitalised? Yes In a way, but I’m still so restricted at home and still unwell
Posted 10/10/2019 12:17 PM (GMT 0)
TBlock, again, yes if it's CDiff you'll eventually get better but it can be a slow process. Some people have to go through multiple rounds of antibiotics which will take a few weeks, not less than one, to kill it (potentially a switch of antibiotics, I needed to step up from vanco to another stronger antibiotic I forgot the name since it's been 4 years). There's even stubborn cases that don't get treated by antibiotics at all which is when FMT is prescribed.....

It sucks, but hang in there, it's easily identifiable and treatable, it's just stubborn and can take some time....
Posted 10/10/2019 12:24 PM (GMT 0)
Thanks Bull
Posted 10/10/2019 1:23 PM (GMT 0)
Going to try the Yakult probiotic fermented milk drink later. Buy a pack. Hearing they help with the gut bacteria and C-Diff in particular. Anything to accelerate getting better again. Anyone try this ?
Posted 10/10/2019 6:10 PM (GMT 0)
T...my doctor told me C. diff is often REALLY difficult to kill...but just be patient. I did ask her yesterday, if it was ok for me to take Diphenoxylate/Atropine to slow the diarrhea. She said it was fine...just not to over do it and notify her if swelling occurs or pain increases. It is the ONLY way I can ease the diarrhea. May wish to ask your doc about it. Like you...I was beginning to wonder if I'd EVER get over this mess. Today seems a little better than yesterday. This is only my 7th day on Vancomycin but she told me it wasn't unusual to have to take more rounds of it. Bad news is....I MAY be more susceptible to C. diff in the future. Good luck and don't give up...gotta stick with the schedule for Vancomycin doses, evidently.
Posted 10/10/2019 8:45 PM (GMT 0)
Thanks Geezer. I just want my bloody life back sad feel it’s been snatched away from me by this Nasty vile disease. I’ll be on day 7 tomorrow and I was told expect 1/2 weeks to recover so I’m trying to remain positive. 33 years of age and having to go through this!!!! Getting married in Italy next year so a lot to look forward to, but just feel so down right now
Posted 10/10/2019 9:23 PM (GMT 0)
I can FULLY understand your frustration Tblock. Ulcerative Colitis is bad enough to have to live with...without any added infections. Just hang in there and never give up. While on Remicade, I was in remission for MANY years, so there is always hope. There is a lot of research going on now; hopefully, a real cure will be found soon. I'm an old man now, but thankfully, with the help of my good Gastro doctor, I did have some pretty good years when I was younger. Guess I'm paying for the sins of my youth now. LOL Just be patient and persistent and know you will get better. Best of luck in the future and in marriage. Keep a sense of humor...it has helped my wife and I a LOT over the years.
Posted 10/12/2019 11:13 AM (GMT 0)
Geezer, yeh I had a 4 year complete remission period after I was hospitalised the first time I got UC at the grand age of 26. Since then I have been getting flares every 8/9 months but always combatting them with the pred and that has always put me in remission. Obviously this case is completely different now as I got C-Diff sad which has slowly sucked the life out of me. I know I’m on the right meds now and I know day 7 on the vancomycin is still very early, but it’s just extremely hard to remain positive when you been unwell for getting on 2 months. Once I combat this C-Diff, I am having a meeting with my Gastro doctor to seriously consider going on the Biologics. I just don’t want to be flaring every 7/8 months anymore either and obviously keep taking the pred is no good for me long term.
Posted 10/13/2019 12:07 AM (GMT 0)
Tblock….Hang in there. It WILL get better....or so I keep telling myself. LOL I know I'm better but this is day 9 for me and I'm still having diarrhea, but not nearly as bad as before I began Vanco.. Biologics seem to be the way to go once you don't have an infection any longer. I know I had many GOOD years on Remicade. Entyvio hasn't been as quick to work, but I'm sticking with it. I don't know if my doc will tell me not to get my next infusion this coming week because of the c. diff. I'll see his nurse Monday and get my answers. Anyway...just be patient a bit longer and never give up.
Posted 10/13/2019 8:17 AM (GMT 0)
Thanks mate. I’m exactly same on day 8 now of Vanco. Still seeing symptoms in my stools of loose mushy stools mixed with Diarrhea like consistency, but nothing as drastic as last week when I was in hospital so clearly the Vanco for me is trying to do something. Obviously I just want to get back to normal so praying it starts to work properly next week and kills this horrible thing
Posted 10/14/2019 8:05 AM (GMT 0)
Day 9 and I’m seriously considering ringing my Gastro team to see if they can double my Vancomycin dose. I know people are saying be patient, but I’m honestly at the end here. 2 months unwell has just taken its toll on me. Never thought I would ever say this, but give me a UC flare over this horrendous thing any day . Atleast with a flare I get some sort of relief once I get on the pred and pretty much all the time I get in remission from it. I don’t feel like I’m getting any better on these antibioticssad I still have 4/5 days left of my course. Honestly don’t know what to do.
Posted 10/14/2019 11:58 AM (GMT 0)
Be careful what you wish for, once pred doesn't work for you anymore, UC is a beast.....at least with CDiff there is a "cure". If the vanco doesn't work within the 2 weeks, ask for different antibiotics (Vanco didn't work for me, I needed Dificid).
Posted 10/14/2019 12:13 PM (GMT 0)
I know mate but I have always been able to combat a flare. Don’t get me wrong I’m not playing down UC flares, they are nasty and I was hospitalised when I was first diagnosed. But in general if I’m flaring, it’s never completely put my life on hold for such a long period. This has literally snatched away my life at the moment. My Gastro nurse speaking with my doctor about a plan if I’m not better by Friday when my Vancomycin course runs out. Might up to it 500MG twice every 4/6hours. Just want this nightmare to end.
Posted 10/14/2019 4:08 PM (GMT 0)
Tblock I really feel for you. I was sooo sick for 7 weeks and no one was helping me. I must be a lucky one as the Vanco started working for me after only 2 days(sorry if that is hard to hear). I would definitely call your doc just to be on the safe side. Maybe they will want you to change anti-biotics. I can totally relate as the c-diff was the worst thing I have ever been through and I have had a horrible UC flare with a newborn/breastfeeding. It just sucked all energy from me and there was no way I could push through or function at all. All of my daily routine was an absolute no for me and my poor husband had to do everything. I just slept and tried to drink fluids. I am back at 95% now and was able to clean my house, do laundry, drink coffee and organize my home office this weekend. No one who hasn't been this sick can understand how good it feels to do the normal things in life. Hang in there!!!!! I totally know exactly how you feel as I saw no end in sight, but then once I got better it was very quick for me. I think yours must be a little more stubborn or maybe your colon is more susceptible(were you in a flare already?).....
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