Ulcerative Colitis Tips


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Dear C Diff: I Hate You

Meet Lisa:

I was diagnosed with UC in December, 2011. Then with C Diff. None of the drugs worked for very long and I had an emergency colectomy in Feb, 2012, the 1st of 3 j-pouch surgeries. C Diff came back big and bad in May, 2012. 2nd jpouch surgery was August 2012. I am scheduled for the 3rd surgery – takedown – Nov 27, 2012, but it may be postponed cuz, guess what?!?! I got C Diff again!!! Argggg!

Some more details about Lisa:

I used to love running and skiing, which I have not been able to do this year d/t UC and C Diff. So, had to change hobbies. I love to walk. I love to hang out with friends and family. I love Downtown Abbey. I love to read, really into David Sedaris right now. I love to research gut diseases.

Symptoms:

Abdominal pain (getting better) and fatigue from the c diff.

C Diff For the 3rd Time:

So last Saturday morning I woke up with stomach cramps and fatigue. My husband joked with me, suggesting maybe I shouldn’t have had the two glasses of wine the previous night. I went about my day, the pain waxing and waning. Then Sunday, an atrocious pain woke me up at 5am. It continued to worsen, so we went to the hospital. They couldn’t find anything wrong except the pain, so I INSISTED they do a C Diff test (btw the ER doc said ‘I don’t think it’s that, your white blood count is fine and you have no fever, but I can do it if you want me to….’ They admitted me, and 24 hours later the test results showed positive for C Diff. I was put on IV Flagyl, oral vacomycin, saccharomyces boulardii and lactobacillus (I can’t take the stuff that Bev takes cuz it’s time released and without a colon, my body can’t absorb it properly). The pain lessened, so I was released on Friday. I’m still fatigued and kind of crampy.

My concern is that this is the third time I’ve had this blasted bug, so why isn’t the treatment different? My GI suggested a new antibiotic called Dificid, but the hospital doctors refused to put me on it due to cost. I guess it’s pretty expensive. The infectious disease doc suggested doing the vaco taper a little differently – one week on, one week off for a month. Also, he suggested fecal transplant, which I am all for, but no doctors in Northeastern Ohio do them. Has anyone had one? Any recommendations re: doctors?

My other concern is that I am going to be more susceptible to having chronic pouchitis because of recurrent c diff when I finally get the reversal done. Up to now, I’ve been assuming that this surgical option is curative, but I do have to be prepared if the pouch fails to have a permanent ileostomy. Not sure how I feel about that.

Medications:

For UC – Asacol, canasa, proctofoam, prednisone, a mesalamine enema, and remecaid (infliximab) did not work at all. When I was maxed out on IV steroids, I went down to 6-8 bloody loose stools/day.

For C diff – In the past, IV flagyl & vacomycin worked, but it keeps coming back.

written by Lisa

submitted in the colitis venting area




c-diff

25 Responses to Dear C Diff: I Hate You

  1. sherry Cook November 21, 2012 at 7:39 pm #

    I hate C-Diff!!
    Had it last year. None this year. Thank you God.
    Hospital for a full week. Test after test.
    I hate CDiff
    Best wishes for you.

  2. KK-SCDer November 21, 2012 at 10:20 pm #

    Hi Lisa,

    I have never had C-diff, nor have I done fecal transplant. However, I am aware that many people do the fecal transplant procedure themselves. Many people go through doctors but the procedure is simple, and more and more people are starting to DIY the procedure. The only reason people go through doctors is (at least this is my understanding) to make sure that the donor bacteria is free of any problems. For information, you can check out: http://www.lucastafur.com/search/label/fecal%20transplant
    I am not telling you to do it yourself, but I am saying that many people do.

  3. mandi November 22, 2012 at 12:47 pm #

    Oh that’s so brutal! I HATE c-diff. The thing I hate the most about it is that it that I can give it to other people or keep reinfecting myself. Makes me feel like I have the plague. I’m scared to even hang out with anyone in case I somehow give it to them. Has anyone you’ve been in contact with contracted it? I might be being overly paranoid. haha. I’ve had c-diff since September and can’t get rid of it. I can’t imagine your frustration of having it 3 times! Yuck! I did a round of Flaygl (which caused some sort of nerve damage) and Vancomycin. I take S boulardi and a bunch of probiotics too. Now I have a kidney infection but the doctor is scared to give me more antibiotic cause then I’ll never get rid of c-diff. So I was wondering (for you and anyone else with c-diff)… did you have negative tests in between c-diff that showed you get rid of it, how do you know it’s a c-diff and not a colitis flare (mine seem so similar)? I’ve read that people have the c-diff bacteria (and test positive), but don’t have any symptoms. So I’m wondering if it is possible to test positive for it but that’s not really the issue (it is really a ibd flare). Hope you get this thing beat soon!

  4. Angela December 2, 2012 at 11:57 pm #

    My daughter was given this drug while in the hospital, the doctors claimed she would be the first one he has ever tried it on, and it was only a few weeks after approval. problem was there where no clinical studies of the effects of persons with c-diff and colitis flares. it costs about 2,000 per pill we got thru 2 days of treatment before we realized it was making it 10x worse. Her c-diff tests even while in the hospital were positive one day, negative the next, so yes that happens quite often….

  5. L4 December 22, 2012 at 6:02 pm #

    I have had it four times…..and I’m 25. Its a horrible horrible disease! Flagyl no longer works for me, so I have resorted to vanco. I ran into your blog because i believe I have cdiff for the 5th time right now…perfect timing for Christmas! I don’t know how I contracted this infection. I had a nasty parasite when I was 21 which cause me to lose about 60 lbs and also screwed up my gall bladder, which was removed about 2 years ago. What hurts the most for me is the anxiety; scared to go out to eat or long trips. I’m lucky to have caring family and friends, but its starting to take over me mentally! I just keep telling myself,people have it worse than me. I try to stay positive, I try to smile. Just wish their was some magic cure. I use to be a healthy fit young man. My job requires me to work long days, but its hard with the fatigue. I feel i need to know where a bathroom is at all time. Ive never wrrote about my experiences with cdiff and I feel I could keep talking about it all day. I’m going to quit blabbering about it, but I want you to know I feel where you come from. The only thing you can do is stay positive and keep smiling. Don’t let it beat you….I’m sure in the hell not going to let it beat me!

  6. Laura January 3, 2013 at 8:08 pm #

    How long does C-diff last? I just got home from hospital with C-diff. I was just in hospital last week with pancreatitis that I got from 3 weeks of 6mp. Do I need to stay isolated from friends and family? So scared for anyone to come see me and for my kids. What can I eat? What can I expect now that I’m home??? I’m so frustrated, i would appreciate any info and hoping you are all on your way to recovery!

    Laura

    • Lisa OH
      Lisa January 5, 2013 at 7:17 am #

      Hi everybody. Thanks for all of your feedback. So helpful!

      Laura. Sorry it’s taken so long to get back to you. I had my takedown surgery Dec 20th and the rocovery was pretty rough for me. And, I contracted C diff for the 4th time. Ugh.

      Anyhow, to answer your questions: Isolation – my docs told me to have my husband (and all other family members) use a different bathroom then me until I test negative. Also clean your bathroom & kitchen with bleach, 1 part bleach, 10 parts water (put it in a spray bottle to make life easier). I ordered Clorox® Healthcare™ Bleach Germicidal Cleaner from office depot online. It’s kind of pricey ($20), but I was too tired to make my own. Make sure you wash your hands thoroughly, with soap (those antibacterial gels don’t kill the cdiff) and make sure your family members wash their hands thoroughly.

      Eating – my GI told me to stay away from sugar and fiber. For me, other foods that exacerbate the diarrhea include acidic foods – tomatoes, tomato sauce and spicy foods. Coffee also makes it worse. Make sure to drink more than usual, b/c you’ll be dehydrated. The nurses told me to include things like G-2, diet poweraide – drinks with electrolytes.

      What to expect when you’re home – you will be extremely fatigued. C diff takes alot out of you. Take it easy and rest alot. You will be pooping alot until the meds kick in, 3-4 days, maybe.

      Hope that helps. Hang in there, it does get better!

      • Laura January 5, 2013 at 3:53 pm #

        Thank you s o much!!! And i hope you getting stronger and beter each day!
        Laura

      • Laura January 28, 2013 at 3:14 pm #

        I just got out of hospital AGAIN!!!! I was only off the med’s for c-diff for a week and got it back. Back in the hospital and now another 14 days of these disgusting med’s that make me constantly nauseous . And the awful metal taste in mouth! Any suggestions to ease that? I’m so frustrated and really want my life back. I think my UC was actually getting better and I’m down to only 10mg of prednisone .
        Hope all is well with you

        • Lisa OH
          Lisa January 28, 2013 at 4:57 pm #

          Hi Laura. I am so sorry abt the Cdiff – I feel your pain. I am on a month-long regimin of vacomycin, then I’m getting a fecal transplant. Look into it, there have been good outcomes w/it. Not sure about the metal taste, I never had that. Gum? Mints? Hope things get better for you soon. Hang in there!

          • Laura January 28, 2013 at 5:13 pm #

            Thanks Lisa! One month straight?? Omg! Do the meds make you nauseous? Im on two, that one and fagile (?). Are you still weak and lots of bm?

          • shirley brown February 25, 2015 at 11:07 am #

            I have had c.difficile for 5months and it is hell. Several courses of Flagyl did nothing and the side effects were terrible. Prescribed Vancomycin but yet again it didn’t work. Now told I may also have inflammatory bowel syndrome caused by the c.difficile. I am quite elderly and worn out with continual pain. Hospitals are full here so getting any treatment is almost impossible. 4times I have been admitted to hospital via my doctor. Kept in under obobservation but given no treatment. The wait for colonoscopy is horrendous. I have reached breaking point with this after being given so much medication and being told I will get better eventually! Health treatment is free here so the system is at breaking point . Today I discovered that I can have a colonoscopy done at a private hospital. Very expensive but I have to have it done. At least I should be closer to finding out what is wrong with me. Bless all of you who are suffering x

          • Renée February 23, 2016 at 5:51 am #

            I realise this correspondence is old, but I’ve recently discovered a natural cure for C Diff which prevents it recurring:
            Magnesium peroxide
            Cell food
            Good grade hydrogen peroxide
            Heavenly Harmony Microbiome Reset (or similar probiotic).
            Antiparasitic containing: clove, black walnut and wormwood
            Avoid all gluten, sugar, alcohol, tea and coffee

        • Patrice August 2, 2016 at 4:43 pm #

          I know this is late to the game but if you put peanut butter on your flagyl it helps with the metallic taste. I’ve had cdiff 7 times and I’m pretty sure I’m having my 8th right now. I also go roughly 20x a day. It’s really horrible. Hope to hear ppl are doing better on here.

  7. Lisa OH
    Lisa January 28, 2013 at 5:32 pm #

    Laura,
    No, I’m about 2 weeks in and my cdiff symptoms have subsided alot. More bm than I’d like (8-10x/day), but not bad for being 5 weeks post op from takedown. The meds do not make me nauseous, and I do get tired pretty easily, but it’s getting better.

  8. Laura March 22, 2013 at 2:58 pm #

    Hi Lisa,

    How are you feeling? I have C-Diff for the 3rd time, doctor suggest a tapering med method. But if it comes back again to look into fecal transplant. Did you ever have it done?? Any input?
    Hope your doing well.

    Laura

  9. Amy February 11, 2014 at 6:51 pm #

    I don’t have UC but have c diff- on 3rd relapse. I am in the same field as you and homebound & not working bc of this infection. I too, HATE c diff!! Best to u & ur family!! I’m from ohio as well just 45 min from u! Have had a crazy time with dr. & getting good tx! What makes me sad, I have this gift if working with trauma & kids but bc I’m so sick and have terrible brain fog, just can’t do it! Take care & thanks for sharing!!

    • Amy February 11, 2014 at 6:52 pm #

      I read somewhere Cleveland clinic may do FT..

  10. Maria Judge March 6, 2014 at 10:41 am #

    I have had c-diff. and post c-diff. IBD and gastro-perisse since Nov.13. It is an awful disease–I have been hospitalized twice. It is a very isolating disease but i am grateful for a site like this – it makes you realize you are not alone. I feel like I have a good set of doctors but they don’t have too many more answers at this point except “it can last a while”!

  11. sherry April 9, 2015 at 11:55 am #

    Hi. I am relieved to find this site. I had C-diff in Sept/Oct of 2014 and was hospitalized due to sepsis from it for 6 days. I was on IV Vanco and Flagyl then sent home with 10 more days of Vanco. It took me awhile to rebound from that. Here we are in April of 2015 and 3 days ago, I started with really, really bad stomach pains, I am exhausted, have liquid/foul smelling stools and am feeling really run down. Feels very much like I did when I had cdiff. I have an appointment with my drs office tomorrow…..Has anyone ever heard of cdiff recurring after 6 months??? Would welcome any feedback at this point.

    • Adam
      Adam April 9, 2015 at 11:57 am #

      Sherry,

      Very sorry to hear you might be dealing with C-diff coming back again. Check with your doctors for sure, they can test you for that which you already know. Also, this post might have some interesting ideas regarding fecal transplants for stopping c-diff if you indeed are dealing with that again. A much higher success rate than with antibiotics: http://www.ihaveuc.com/fecal-microbiota-transplant-questions-and-answers/

  12. mandi April 12, 2015 at 10:15 am #

    I have been C-Diff and UC major flare free for the past 2 years. I gave up refined sugar and gluten completely two years ago in hopes of keeping my colon. I take a probiotic every day and I cycle through S Boulardi (a probiotic that specifically targets C-Diff) frequently. Hope you might have some help from that too.

  13. Lisa Dupuis April 15, 2016 at 4:20 pm #

    I was recently diagnosed with c. Diff by my GI doc. I have Crohn’s disease and thought I was having a flare up. I kept telling my doctor that I had no energy felt weak and couldn’t sleep enough. After treating with prednisone thinking it was a flare and not getting better he tested me for c. Diff which came back positive. He put me on two antibiotics I can’t remember the name of the first one but the second being flagil. Initially I started feeling better. Now I’m still having low energy and strength feeling tired and frustrated. Been out of work for 4 weeks now. Just want to feel better and have quality of life. Now after reading all the reoccurring c. Diff cases I’m really freaking out.

  14. Heidi April 18, 2016 at 8:34 pm #

    Its hard not to freak out. I had a 4 month battle with recurring c-diff and tried vancomycin, then dificid twice, then vancomycin and finally a vanco taper to take me up to the fecal transplant. Every time I was finished my antibiotics it would return within 2 – 3 days. The fecal transplant seemed to have worked for 2 1/2 months but now it looks like I’m having a recurrence. From what I’ve read, I believe that I did not take enough of the ‘poop pills’ at one time, and also believe I should have had several treatments. I’m so thankful for a naturopathic dr. who was willing to try, though, and is willing to try again. I certainly did not get that kind of help from the mainstream medical system. I recommend FMT for anyone who is dealing with this incredibly horrible illness. I’d pretty much swallow anything to get rid of it :)

  15. Lindsey May 18, 2016 at 8:23 pm #

    Ugh I’ve Been threw cdiff twice just when I thought it was over. I think it’s starting again. Antibiotics are a killer on me ugh extreme stomach aches, cramps,back cramps. Feel sick to my stomach. Ugh and the bland food I seriously feel like I’m going to loose it.I’ve been doing the best I can by keeping clean and what not. I just don’t know what to do. My hole life iv been pretty healthy. Started having teeth problems get prescribed amoxicillin lol nope that kicked my behind so bad so off that then flagyl then on and off more antibiotics. Then cdiff it’s like ugh people antibiotics hate me no more please. I so need another scenario. And I do believe transplants and what not they don’t do here. I’m going to loose it yep I am.

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