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ericsoaps
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 4/26/2011 9:21 PM (GMT -7)   
Hey guys,
I am a 24 yr male who has been diagnosed with indeterminate colitis since I was 19, after many drugs ( steroids, Imuran) and going untreated I began treatment for Remicade in January. Remicade worked right away for me and to finally have relief was nice. Unfortunately I am now battling C.Diff for my third consecutive time, it just seems to keep coming back and more and more stubborn each time. Its been tough and i am feeling very low/sad and scared, does anyone have any advice ? or insight on battling UC and a stomach infection.

Thanks Everyone,
Eric

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 18186
   Posted 4/26/2011 9:47 PM (GMT -7)   
Do you take probiotics daily and indefinitely? You'd be surprised at finding the right (good quality) probiotic giving improvements...when you have C-Diff they constantly put you on heavy duty antibiotics which wipe your system clean of all bacteria including the good which often turns into a vicious circle...try a good probiotic (even when you're not on antibiotics, research shows that a good probiotic can aid with IBD. Good luck!
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10589
   Posted 4/26/2011 9:53 PM (GMT -7)   
eric, I am sorry that you're having so much trouble with c. diff. Supposably people with Colitis are much more prone to getting infected with c diff than the general population, just another fun side effect of having colitis. Are you taking vancomyacin? Were you diagnosed by colonoscopy or by stool samples? I thought I had c. diff last time I had a scope but luckily it came back negative. I have seen a lot of members dealing with c. diff in the past and even a few with recurrent c. diff infections. I hope some of them respond with useful tips on erradicating the bacteria.

Try to think positive, things will get better.
 
You could also do a search for fecal transplant or speak with your GI about it. They won't use the procedure for colitis but I believe it is approved for treatment of c. diff. If you do it on your own, you have ot be very careful about testing the donor for illness.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa + 6mp + Allopurinol | Currently: stable - Asacol (3200mg) + 6mp + Ponstel

ericsoaps
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 4/26/2011 10:08 PM (GMT -7)   
I am taking BioK daily, I took it in the past but did not keep up with it, after hearing how important it is when taking antibiotics I am going to stick to it religiously.

I have had four stool test completed, first negative, second positive, third negative and the fourth one waiting to get results.
At the moment I am on Metroindazole (flagyl) which does not seem to be working so I am waiting to have a colonoscopy to get a better understanding to what is working against me and hopefully an effective way to combat it

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10589
   Posted 4/26/2011 10:41 PM (GMT -7)   
I've heard Flagyl is not neaarly as effective as vancomycin for treating c. diff. I hope others with more experience chime in but I would ask specifically for Vanco.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa + 6mp + Allopurinol | Currently: stable - Asacol (3200mg) + 6mp + Ponstel

ericsoaps
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 4/26/2011 10:52 PM (GMT -7)   
Thanks for the recommendation I will definitely bring it up.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 4/27/2011 1:40 AM (GMT -7)   
fecal transplantation:

http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

The treatment is still considered alternative; so your GI will probably not be able to suggest or recommend it.

Chris'sColon
Regular Member


Date Joined Jun 2008
Total Posts : 237
   Posted 4/27/2011 6:07 AM (GMT -7)   
my son has reccurring c-diff infections since having his colon removed last november. the Flagyl didn't even touch it. we've been cycling with vancomycin and while he's on that he's great, but when he comes off it the infection returns. the probiotics have helped a TON in slowing down the return, but haven't yet stopped it. i give him 2x's daily culturelle, florastor and and ultimate flora critical care. we go see the dr. about this today. i think our next step is the fecal transplant. our pharmacist says he usually sees repeat cycles of vanc until it is beat. i've read that prolonged use of Flagyl can cause permanent nerve damage so that may be something you want to consider in your treatment. also, remicade makes you more prone to infection, so this may be a particularly difficult battle for you. i'll let you know what we learn today.
Veronica, mom of chris age 5
symptoms started shortly after birth
dx at age 2 with moderate colitis
scoped again at age 5 upgraded to severe pancolitis
flared almost constantly with only temporary remission from steroids
total colectomy and ileo-anal anastomosis November 2010
great surgery wise
reccurrent c-diff infection :(

ericsoaps
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 4/27/2011 6:43 AM (GMT -7)   
Thanks for the advice Veronica, and keep me posted about what you find out. I have been hearing a lot about florarestor so I am going to do some looking into that as well.

bosco123
Regular Member


Date Joined Sep 2010
Total Posts : 177
   Posted 4/27/2011 7:54 AM (GMT -7)   
I was on 5 weeks of antibiotics (Bactrim DS) twice daily and from what I have read, you can get c diff after you stop the antibiotics.  Does anyone know how long after stopping antibiotics you are at risk of getting c diff?  I've been taking probiotics but still worried about it.  My bm's are very fluffy and it worries me.

astar
Regular Member


Date Joined Feb 2010
Total Posts : 99
   Posted 4/27/2011 10:27 AM (GMT -7)   
Hey Eric, for the fecal transplantation there is a clinic in minnesota that does it for the treatment of c dif. The success rate is ridiculously high. http://www.duluthclinic.org/specialtycenters/digestivehealth/argonplasmacoagulation.htm I talked to them about a year ago, wanted to try it for colitis, but they only do it currently with a diagnosis for cdif. It's really worth checking out.

I had an aunt with c dif before we knew about the ft option. She had it surgically removed, and is very happy with the outcome, so there is that option too.

Best of luck to you!
diagnosed 8/08 with left sided UC
female, 38 years old
colazal currently 3 3x daily
ldn 4.5 mg started 2/8/11
prenatal vitamin/iron supplement
vitamin d supplement
pre/probiotics
fish oil

Chris'sColon
Regular Member


Date Joined Jun 2008
Total Posts : 237
   Posted 4/27/2011 2:18 PM (GMT -7)   
well we learned nothing at our appointment today, just got refferred to the infectious disease Dr. the FT has a very high success rate for c-diff and can be done in the comfort of your own home, but your donor needs screening before hand for parasites and communicable diseases.

Bosco, IDK about anyone else, but Chris' c-diff always developes within 4 days of stopping antibiotics. it was much more gradual at coming back this last time with all the probiotics though and took about a month to fully develop. his symptoms are massive amounts of water/poo, fever, lethargy, loss of apetite, tummy gurgling and abdominal pain.
Veronica, mom of chris age 5
symptoms started shortly after birth
dx at age 2 with moderate colitis
scoped again at age 5 upgraded to severe pancolitis
flared almost constantly with only temporary remission from steroids
total colectomy and ileo-anal anastomosis November 2010
great surgery wise
reccurrent c-diff infection :(

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 4/27/2011 2:44 PM (GMT -7)   
Fecal transplant for C-diff has a success rate of 80-100%. Completely disgusting, yes, but worth doing. Where are you located? There are hospitals in both Canada and the US that are treating C-diff this way, but as mentioned, you can do it from home.
F/42 • Ontario • UC Dx Sep/09- 50cm (far as flex would go) Pred dependent. Remicade Jan 24/11 - up'd to 10mg/kg Apr 14/11. Budesonide or cortifoam enema nightly • Fecal Transplant - unsuccessful Apr/11

Tried: SCD, VSL, other diets •Can't take 5-ASA or Imuran•0 mg pred (Dec./10), 0mg Entocort (Feb./11), Vit D 4000IU, Probiotics • Calcium•Synthroid, Pantaloc

IBDISTHEPITS
Regular Member


Date Joined Dec 2009
Total Posts : 357
   Posted 4/27/2011 2:50 PM (GMT -7)   
Florastor seems to be very helpful in battling c-diff and keeping it away.
I would start it right away and take at least 2 times a day for a very long time-
Daughter, age 10. Diagnosed with UC 10/2009
Unable to take mesalamines. Finally off Prednisone...never again :(
Current regimen that is working-
6-MP
VSL#3

ericsoaps
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 4/30/2011 7:11 AM (GMT -7)   
Hi guys thanks for all the replies, right now I am sitting in my hospital bed because I was admitted. At the moment I tested negative for c.diff they did another test that will take longer to see of anything is laying dormant in me. I had a colonoscopy and I guess because of the c.diff I thought I had or if it was a flare up on and off for the last few months did a toll on me and they decided to keep me for a bit. I am continuing my remicade and they started me on a steroid treatment as well as a cortisone enema. Hopefully this helps me get back to where I was and whatever flare up or infection I had does not come back. Also I think as soon as I get out of here I am going to start rigously and religiously taking Florastor, heard great things about it from you guys.

Chris'sColon
Regular Member


Date Joined Jun 2008
Total Posts : 237
   Posted 4/30/2011 8:51 AM (GMT -7)   
we've had more false negatives than positives when testing stool for c-diff toxins. i don't trust those tests at all. what did the scope pics look like? chris' c-diff looks like fuzzy white patches, like wet scab sort of.
if it is flare-up then those treatments should help, right? if it is c-diff they should't.
Veronica, mom of chris age 5
symptoms started shortly after birth
dx at age 2 with moderate colitis
scoped again at age 5 upgraded to severe pancolitis
flared almost constantly with only temporary remission from steroids
total colectomy and ileo-anal anastomosis November 2010
great surgery wise
reccurrent c-diff infection :(

ericsoaps
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 4/30/2011 10:31 AM (GMT -7)   
I totally hear you. I've had mostly negatives, but in the past I did have one positive. So makes me wonder also I know exactly what you're talking about because I have seen it come out of me ( gross I know) white pus/spore looking things but when I just had my colonoscopy my docoypr saw nothing that pointed to c.diff so I'm totally confused myself just hoping for the best really and my plan is to follow my doctor orders then when I am realeased pump up on some probiotics.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10589
   Posted 4/30/2011 10:33 AM (GMT -7)   
I am so sorry that you're in the hospital Eric. I hope they can figure out what is going on and that you have a successful treatment plan when you leave there.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa + 6mp + Allopurinol | Currently: stable - Asacol (3200mg) + 6mp

ericsoaps
Regular Member


Date Joined Nov 2010
Total Posts : 42
   Posted 4/30/2011 10:49 AM (GMT -7)   
Thanks sucks that I am here but looking at like I'm getting the help I needed since I was very week and lost a lot of weight. Thanks for looking out guys
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