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Crohn's with C-Diff Support Group
- Thread starter Kinsey
- Start date
Spooky1
Well-known member
- Location
- South Northants
Thank you, Ron.
CarolinAlaska
Holding It Together
J has done it twice. Not nice stuff, but doable. Stay away from any form of alcohol or it will make you really ill.
Hi, check with your dr. first, but try Gravol to deal with the nausea. Over the counter.
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Have you tried Vancomycin? Supposed to be better. I am allergic to Vancomycin though.
Hi, Ron,
from http://www.drugs.com/vancomycin.html
What is vancomycin?
Vancomycin is an antibiotic. When taken by mouth it fights bacteria in the intestines.
Vancomycin is used to treat an infection of the intestines caused by Clostridium difficile, which can cause watery or bloody diarrhea. It is also used to treat staph infections that can cause inflammation of the colon and small intestines.
Oral vancomycin works only in the intestines. This medicine is not normally absorbed into the body and will not treat other types of infection. An injection form of this medication is available to treat serious infections in other parts of the body.
Vancomycin may also be used for purposes not listed in this medication guide.
CarolinAlaska
Holding It Together
My doctor says that insurances will not cover vancomycin unless you have failed Flagyl three times. It is very expensive.
Hey everyone. So here's my story about Crohns and Cdiff.
I've been diagnosed with crohns since 2008. I work in the health care field and have had 2 bouts of cdiff over the years. In June 2015 I experienced my 3rd. Several years ago when I had cdiff I had a terrible time with flagyl so they put me on vancomyacin right away. After a few weeks I felt better and took my cimzia. Then once again got Cdiff. I was on another round of Vanco and was cleared then took my cimzia and got cdiff. (you can see how things are going here right?) Anyway after the third round of cdiff I had a CT scan that showed my Crohns site was obviously flared and had doubled in size since my CT 3 years prior. My Dr wanted to put my on difficid(a very expensive drug i believe it was 1700 out of pocket) Anyway I called my Dr saying I didn't know what to do bc I really couldn't afford something like that. So we did a fecal transplant. I did have to pay for my donors testing but otherwise has been a great success. It was done during a colonoscopy. 3 months have gone by and I still don't have Cdiff thankfully! I'm on my first round of antibiotics since then (I have a new fistula and a microperforation) So I'm praying and crossing everything on my body that I don't get Cdiff again. Having it June-Oct was a nightmare.
Edit ** I also had started taking VSL #3 during the last round of vanco
I've been diagnosed with crohns since 2008. I work in the health care field and have had 2 bouts of cdiff over the years. In June 2015 I experienced my 3rd. Several years ago when I had cdiff I had a terrible time with flagyl so they put me on vancomyacin right away. After a few weeks I felt better and took my cimzia. Then once again got Cdiff. I was on another round of Vanco and was cleared then took my cimzia and got cdiff. (you can see how things are going here right?) Anyway after the third round of cdiff I had a CT scan that showed my Crohns site was obviously flared and had doubled in size since my CT 3 years prior. My Dr wanted to put my on difficid(a very expensive drug i believe it was 1700 out of pocket) Anyway I called my Dr saying I didn't know what to do bc I really couldn't afford something like that. So we did a fecal transplant. I did have to pay for my donors testing but otherwise has been a great success. It was done during a colonoscopy. 3 months have gone by and I still don't have Cdiff thankfully! I'm on my first round of antibiotics since then (I have a new fistula and a microperforation) So I'm praying and crossing everything on my body that I don't get Cdiff again. Having it June-Oct was a nightmare.
Edit ** I also had started taking VSL #3 during the last round of vanco
Just recently in the hospital for another small bowel obstruction. Was given IV antibiotics "in case of infection"???? Left hospital with diarrhea which continued the following week. Finally tested for C-Diff. Positive, again! Liquid Vancomyocin 4x a day for two weeks. Surgery scheduled for 4/25. Need to get the ileocecal valve and about 1 foot of small intestine removed. 11 obstructions have been way too many. Hope C-Diff is gone by then. Still using Stelara, Entocort, probiotics, Vitamin D. Nothing works long term. I'll probably try Remicade next.
CarolinAlaska
Holding It Together
Sorry to hear it. I hope this helps. Nothing worse!
Hi, my son has crohns since 2006 he is 16 he never had diarrhea or stomach pain, his only problem anal fissures, and pimples or abscess.. A year and half ago he started going to the bathroom more often and bleeding, bright red. They dr put him prednisone a
For 2 months, the bleed stop and the bathroom stop, a year later exactly, nov 2015 he started bleeding and going to the bathroom more often, he lost weight, they put him again on prednisone for 2 months . Finished it 1st week on February. After few week he started to bleed again, dr said is from the fissures that he has in the Anal area.. Then he started to go to the bathroom more often and watery. Lost 10 lbs in 12 days. He has been in Flagyl and cipro for almost 8 years. 6 months one and 6 months teh kerosene, to keep the abscesses in the ano under control. Well he had a colonoscopy last week. All colon is swollen so he had colitis , dr suspected he had C- diff. ( he had this test done back in nov 2014 and nov 2015 both times came negative). The dr did a biopsy and came positive to C-diff. He started right away in vancomycin Hcl 125 4 times a day for 14 days. He dr does want him to be tested again in 30 days for c-diff. Now. He stools are not smelly at all. He got the c diff due to the long term of antibiotics . The bleeding is from a deep tissue he has on the anal area. How long does it take for the medicine to take effect. Will the diarrheal stop with the medicine? he was going to the bathroom recently every 2 hours.. Since he started the medicine he has not waken up at night to use the bathroom, during the day he does go but not as frequently as he used to, but still watery, maybe once a day he will have a solid stool. Is this because of the Medicine? And also He has no pain even though all the colon has inflammation. How long for the colon to become normal?
ThanK you Lizette
Michael dx at age 6 now 16 almost 17
Pentasa, vitamin d, iron, probiotics and now vancomycin.
For 2 months, the bleed stop and the bathroom stop, a year later exactly, nov 2015 he started bleeding and going to the bathroom more often, he lost weight, they put him again on prednisone for 2 months . Finished it 1st week on February. After few week he started to bleed again, dr said is from the fissures that he has in the Anal area.. Then he started to go to the bathroom more often and watery. Lost 10 lbs in 12 days. He has been in Flagyl and cipro for almost 8 years. 6 months one and 6 months teh kerosene, to keep the abscesses in the ano under control. Well he had a colonoscopy last week. All colon is swollen so he had colitis , dr suspected he had C- diff. ( he had this test done back in nov 2014 and nov 2015 both times came negative). The dr did a biopsy and came positive to C-diff. He started right away in vancomycin Hcl 125 4 times a day for 14 days. He dr does want him to be tested again in 30 days for c-diff. Now. He stools are not smelly at all. He got the c diff due to the long term of antibiotics . The bleeding is from a deep tissue he has on the anal area. How long does it take for the medicine to take effect. Will the diarrheal stop with the medicine? he was going to the bathroom recently every 2 hours.. Since he started the medicine he has not waken up at night to use the bathroom, during the day he does go but not as frequently as he used to, but still watery, maybe once a day he will have a solid stool. Is this because of the Medicine? And also He has no pain even though all the colon has inflammation. How long for the colon to become normal?
ThanK you Lizette
Michael dx at age 6 now 16 almost 17
Pentasa, vitamin d, iron, probiotics and now vancomycin.
- Location
- Arizona
I was prescribed Vancomycin about a year ago for C-diff. My Insurance Company had to do a "pre-authorization" for this expensive medicine. My Insurance Company paid about 66% of the cost and I paid the rest. Unfortunately my part cost me $405.00 for a two week supply. Outrageous !
- Location
- Arizona
I had C-diff a year ago. Does this mean that I have a greater chance of getting C-diff again ? Do people get C-diff over and over again ? Just wondering.
@Ann Morgan
It's certainly possible to contract C Diff repeatedly, especially if you have IBD i believe your chances of contracting it are higher than the average person's.
I was in the hospital this past week for pancreatitis caused by Imuran failure, I then contracted (I imagine) C-Diff during my stay. This came as a surprise to me as I didn't really have any symptoms of pain outside the normal untreated flare pain (I was recently diagnosed, haven't started full treatment yet). They prescribed me a 12 day cycle of flagyl at 6 x 50mg pills a day. Bowel movements have been pretty well inconsistent, soft hardly formed, a couple nearly formed but not very often and only 2 bouts of actual watery D in a total span of 4 days.
I know everyone heals differently but did anyone else experience anything similar, have a general timeline in which they healed? Any symptoms I should be aware of that warrant a return to the ER?
Thank you very much for hearing me out and I hope everyone is well!!!
Keenan
It's certainly possible to contract C Diff repeatedly, especially if you have IBD i believe your chances of contracting it are higher than the average person's.
I was in the hospital this past week for pancreatitis caused by Imuran failure, I then contracted (I imagine) C-Diff during my stay. This came as a surprise to me as I didn't really have any symptoms of pain outside the normal untreated flare pain (I was recently diagnosed, haven't started full treatment yet). They prescribed me a 12 day cycle of flagyl at 6 x 50mg pills a day. Bowel movements have been pretty well inconsistent, soft hardly formed, a couple nearly formed but not very often and only 2 bouts of actual watery D in a total span of 4 days.
I know everyone heals differently but did anyone else experience anything similar, have a general timeline in which they healed? Any symptoms I should be aware of that warrant a return to the ER?
Thank you very much for hearing me out and I hope everyone is well!!!
Keenan
- Location
- Arizona
I was diagnosed with C-diff in April 2015 after my stool sample came back positive for C-diff. I was given a prescription for a two week supply of Vancomycin pills. I followed up with my doctor after the two weeks and he said I was OK. My doctor did not require a stool sample from me after my treatment. The prescription was very expensive, even with me having health insurance.
My UC symptoms have always been diarrhea. But in 2014 I had terrible constipation. I got prescribed an antibiotic by one of my doctors and this brought my diarrhea back, and then some. Then I was diagnosed with the C-diff and was prescribed the Vancomycin.
( I was given Flagyl by my PCP after my diagnosis until I could get an appointment set up to see my new Gastroenterologist. Flagyl did not work for me, it just gave me worse diarrhea. )
Thank you for listening.
- Location
- Arizona
Keenan : I recommend the www.mayoclinic.org website for reliable information.
There is also some information about C-diff on www.c-difficile-treatment.com, but I am not as familiar with this website. ( Note : they are trying to sell a book and their recommendations for natural health remedies ).
There is also some information about C-diff on www.c-difficile-treatment.com, but I am not as familiar with this website. ( Note : they are trying to sell a book and their recommendations for natural health remedies ).
Thank you very much for sharing both your story, and information! I'm sorry to hear it's been such a pain along with an already..
Hope all is well!!
Hope all is well!!
CarolinAlaska
Holding It Together
I'm glad it was negative. I hope your tummy is back on track quickly.
Thanks
Lynda Lynda
Member
The last post here was 2016 ? Is there another group for c-diff ?
Not that I am aware of.
My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds,
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.
How long do people give remicade a chance? How soon should we see a response?
He is on his second round of antibiotics now for C-diff....
any advice?
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.
How long do people give remicade a chance? How soon should we see a response?
He is on his second round of antibiotics now for C-diff....
any advice?
C-Diff and My Roller Coaster Ride
Hello,
I just got out of the hospital two weeks ago and I'm still on the antibiotic budesonide because it was my fourth round with C-Diff since last October. Seven more days in the hospital and I'm working with an Infectious Disease doctor. The last 16 months, every time I started feeling better, I got knocked back down and get weaker and weaker.
Last Friday I was getting ready to get on my bicycle that's on a trainer in the basement, twenty steps away from the bathroom. I tried walking but every time I get active I have to go to the bathroom.
I lost 80 pounds since I was diagnosed and most of it is muscle. My nutritionist put me on an all liquid diet to give my intestines a break as the Entivio is now starting to work. It's from a company called Kate Farms and is the same formula used in feeding tubes. The proteins are broken down into peptides. At 500 calories a day, she wanted me to start on four a day and then move to 5 a day to help get my weight to move in the right direction. I haven't been 154 lbs. since I was a sophomore in high school in 1983.
Unfortunately something in them sent me into diarrhea progressively worse. I was told that it might take a few days for my body to adjust so I stayed with it until it got too much and I couldn't keep up my hydration. After I started eating solid food, my poop got solid.
After I finish tapering down budesonide I am most likely to get a Fecal Transplant. Which is good because as a child due to being born 8 weeks early with a hole in my heart where the four chambers had not closed. So in the sixties until the early eighties I was pumped up with antibiotics every time I had a cold, flu or my many bouts with pneumonia. Doctors thought antibiotics could do no harm. Even today we are just starting to understand the millions of cells in the biome. So my biome lost it's ability to defend me, where 80% of the immune system resides. A fresh biome will be a blessing.
I'm on Wellbutrin and Cymbalta which helped me from jumping into the abyss lake of depression. I can't help but wonder, not when I will reach remission, but what the hell is going to happen next.
Remicade starting working than failed. Humira started to work and whether or not it was C-Diff or the Humira failing, I went to the hospital for my first battle with C-Diff. I kept up the Humira until my third round with C-Diff.
To further complicate my life, one week ago my ankles, knees and elbows joints got inflamed. My doctor tested me for Rheumatoid Arthritis (RA), another autoimmune disease.
I'm trying to be cautiously optimistic as I feel my guts settling down and my joints have calmed down, other than a torn muscle in my left foot from walking down the stairs with inflamed ankles. It's interesting it happens on the left foot. My left knee has been dislocating. My knees are misaligned. The year before I developed Crohn's I had surgery on my right knee after an unfortunate collision during a competitive volleyball game. I asked my orthopedic surgeon about the misalignment. He told me my knees were strong enough to not worry. All of my bike riding and volleyball paid off.
Now that my body has shrunk me into a ghost of what I used to be, my strong knees are gone. Luckily everything is loose enough that nothing is being damaged. The MRI was clear. I have a fancy knee brace that I need to wear more often, but at night when most of the dislocations happen because I am an active sleeper, the brace tangles and my blankets go away. The best way to remedy this is to ride my bike, which was about to happen when my joints inflamed. I find out next week if my blood test shows RA.
When I turned 50, my doctor prescribed medicine for my high blood pressure and high glucose. I did the unconventional route and started exercising and making better food choices. I didn't need any medicine and was feeling great. I hit a plateau at 235 lbs. I prayed to lose 20 more pounds and the next week when Criohn's assaulted me and my high fiber diet. After ten days, I was hospitalized 25 pounds lighter, water weight from massive dehydration and lack of absorbing food for many days had me 4 days away from organ failure and as the doctor explained, 4 days form never going home again.
It’s been a real roller coaster ride, but hopefully by the end of next summer, I’ll be riding my bike in the Colorado Rockies that I look at every day from my Centennial home, a suburb of Denver.
Hello,
I just got out of the hospital two weeks ago and I'm still on the antibiotic budesonide because it was my fourth round with C-Diff since last October. Seven more days in the hospital and I'm working with an Infectious Disease doctor. The last 16 months, every time I started feeling better, I got knocked back down and get weaker and weaker.
Last Friday I was getting ready to get on my bicycle that's on a trainer in the basement, twenty steps away from the bathroom. I tried walking but every time I get active I have to go to the bathroom.
I lost 80 pounds since I was diagnosed and most of it is muscle. My nutritionist put me on an all liquid diet to give my intestines a break as the Entivio is now starting to work. It's from a company called Kate Farms and is the same formula used in feeding tubes. The proteins are broken down into peptides. At 500 calories a day, she wanted me to start on four a day and then move to 5 a day to help get my weight to move in the right direction. I haven't been 154 lbs. since I was a sophomore in high school in 1983.
Unfortunately something in them sent me into diarrhea progressively worse. I was told that it might take a few days for my body to adjust so I stayed with it until it got too much and I couldn't keep up my hydration. After I started eating solid food, my poop got solid.
After I finish tapering down budesonide I am most likely to get a Fecal Transplant. Which is good because as a child due to being born 8 weeks early with a hole in my heart where the four chambers had not closed. So in the sixties until the early eighties I was pumped up with antibiotics every time I had a cold, flu or my many bouts with pneumonia. Doctors thought antibiotics could do no harm. Even today we are just starting to understand the millions of cells in the biome. So my biome lost it's ability to defend me, where 80% of the immune system resides. A fresh biome will be a blessing.
I'm on Wellbutrin and Cymbalta which helped me from jumping into the abyss lake of depression. I can't help but wonder, not when I will reach remission, but what the hell is going to happen next.
Remicade starting working than failed. Humira started to work and whether or not it was C-Diff or the Humira failing, I went to the hospital for my first battle with C-Diff. I kept up the Humira until my third round with C-Diff.
To further complicate my life, one week ago my ankles, knees and elbows joints got inflamed. My doctor tested me for Rheumatoid Arthritis (RA), another autoimmune disease.
I'm trying to be cautiously optimistic as I feel my guts settling down and my joints have calmed down, other than a torn muscle in my left foot from walking down the stairs with inflamed ankles. It's interesting it happens on the left foot. My left knee has been dislocating. My knees are misaligned. The year before I developed Crohn's I had surgery on my right knee after an unfortunate collision during a competitive volleyball game. I asked my orthopedic surgeon about the misalignment. He told me my knees were strong enough to not worry. All of my bike riding and volleyball paid off.
Now that my body has shrunk me into a ghost of what I used to be, my strong knees are gone. Luckily everything is loose enough that nothing is being damaged. The MRI was clear. I have a fancy knee brace that I need to wear more often, but at night when most of the dislocations happen because I am an active sleeper, the brace tangles and my blankets go away. The best way to remedy this is to ride my bike, which was about to happen when my joints inflamed. I find out next week if my blood test shows RA.
When I turned 50, my doctor prescribed medicine for my high blood pressure and high glucose. I did the unconventional route and started exercising and making better food choices. I didn't need any medicine and was feeling great. I hit a plateau at 235 lbs. I prayed to lose 20 more pounds and the next week when Criohn's assaulted me and my high fiber diet. After ten days, I was hospitalized 25 pounds lighter, water weight from massive dehydration and lack of absorbing food for many days had me 4 days away from organ failure and as the doctor explained, 4 days form never going home again.
It’s been a real roller coaster ride, but hopefully by the end of next summer, I’ll be riding my bike in the Colorado Rockies that I look at every day from my Centennial home, a suburb of Denver.
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Spooky1
Well-known member
- Location
- South Northants
Thike, I sincerely hope things improve for you soon. What a terrible time you've had.
Thank you Spooky,
Having a good day today. I cautiously hope this turn around is going to lead to remission.
Next week I will receive an aloe tincture from Univera, it's concentrated to only the healing compounds. A good friend of mine and her and her grandmother that she lives with both are feeling ten years younger using Univera products. So onward I go.
Cheers,
Michael
Having a good day today. I cautiously hope this turn around is going to lead to remission.
Next week I will receive an aloe tincture from Univera, it's concentrated to only the healing compounds. A good friend of mine and her and her grandmother that she lives with both are feeling ten years younger using Univera products. So onward I go.
Cheers,
Michael
Spooky1
Well-known member
- Location
- South Northants
Is this product available without prescription? I could do with feeling 10 years younger, Thike. I try all sorts of things to help me, but not many do. I hope you manage a good phase of remission. It's the fatigue with me, along with RA. Somehow i think they will find a cure once i'm gone to Heaven, lol.