Crohn's Disease and C Diff

[missfay]

Hi I am new here and I have been really stressed out with my Crohn's because in November when I went for a routine colonoscopy something horrible happened.

After a day or two suddenly I had horrible bouts of diarrhea that went up to 10 times a day. I am a female in my mid twenties and about 5'4" my best weight has been 110 lbs. After a week this severe diarrhea caused me to loose so much weight. I am now 98 lbs.

I called the nurse after a few days and she told me maybe it was my medication Entocort but I told her I took it before with no side effects. I was taking it for a flare up. She told me to stop it for a week and let her know.

I waited and it got worse so bad that I couldn't even leave my house. I also noticed the diarrhea had a particular smell to it and I again told her. I begged her to give me something to stop this or try to fit me in to see my GI. She faxed my pharmacy a prescription for lomotil an anti-diarrheah medication and it made my diarrhea even worse!

After 2 weeks of complaining she finally got me to do a blood and stool sample and I was diagnosed with C Diff. I never heard of this until then and I started googling it like crazy.

IN FACT giving someone lomotil when they have C Diff infection is extremely bad "Use of antidiarrheals is contraindicated in all cases of pseudomembranous enterocolitis as this may exacerbate toxin-mediated disease and precipitate toxic megacolon"!!!!! I couldn't believe this!

I was given antibiotics and it seemed to go away. Here I am almost 4 months later and I am still having diarrhea although no where near as bad. I am still 98 lbs and even today I have gone to the washroom 5 times.

Since my Crohn's is mild I only take steroids when needed because the medications scare me I tried methotrexate and more. All gave me horrible side effects so I just take steroids with a flare up. I have never gone into remission.

I am so scared that I may still have C Diff and I am waiting to check again I am positive that I got the infection from the hospital. I really need help and advice from someone who may have had a similar experience.

 

[ronroush7]

Welcome to the forim. .I am sorry you are having this problem. I am going to tag CarolinAlaska. I hope you get some answers.

 

[Ian_H]

Hi I am new here and I have been really stressed out with my Crohn's because in November when I went for a routine colonoscopy something horrible happened.

After a day or two suddenly I had horrible bouts of diarrhea that went up to 10 times a day. I am a female in my mid twenties and about 5'4" my best weight has been 110 lbs. After a week this severe diarrhea caused me to loose so much weight. I am now 98 lbs.

I called the nurse after a few days and she told me maybe it was my medication Entocort but I told her I took it before with no side effects. I was taking it for a flare up. She told me to stop it for a week and let her know.

I waited and it got worse so bad that I couldn't even leave my house. I also noticed the diarrhea had a particular smell to it and I again told her. I begged her to give me something to stop this or try to fit me in to see my GI. She faxed my pharmacy a prescription for lomotil an anti-diarrheah medication and it made my diarrhea even worse!

After 2 weeks of complaining she finally got me to do a blood and stool sample and I was diagnosed with C Diff. I never heard of this until then and I started googling it like crazy.

IN FACT giving someone lomotil when they have C Diff infection is extremely bad "Use of antidiarrheals is contraindicated in all cases of pseudomembranous enterocolitis as this may exacerbate toxin-mediated disease and precipitate toxic megacolon"!!!!! I couldn't believe this!

I was given antibiotics and it seemed to go away. Here I am almost 4 months later and I am still having diarrhea although no where near as bad. I am still 98 lbs and even today I have gone to the washroom 5 times.

Since my Crohn's is mild I only take steroids when needed because the medications scare me I tried methotrexate and more. All gave me horrible side effects so I just take steroids with a flare up. I have never gone into remission.

I am so scared that I may still have C Diff and I am waiting to check again I am positive that I got the infection from the hospital. I really need help and advice from someone who may have had a similar experience.

I had a similar experience. I had C Diff about 3 years ago. I tested positive initially with the usually symptoms like you. I was put on an antibiotic and retested a month later and was negative which is great but I still had diarrhea like you. I was told that C diff can mess up your internal flora in your intestines that even when you rid the over active c diff you can still have diarrhea. My GI said it can take a few months for your flora to become balanced again. Sorry that your going through this and best of luck!

 

[ronroush7]

I had a similar experience. I had C Diff about 3 years ago. I tested positive initially with the usually symptoms like you. I was put on an antibiotic and retested a month later and was negative which is great but I still had diarrhea like you. I was told that C diff can mess up your internal flora in your intestines that even when you rid the over active c diff you can still have diarrhea. My GI said it can take a few months for your flora to become balanced again. Sorry that your going through this and best of luck!

I don't know if you are on probiotics but I was told that while you are on antibiotics to double up on probiotics.

 

[JaimeM]

I had Cdiff for 4 months last summer. If they put you on Flagyl it may not be strong enough to take care of the strain of Cdiff you had.. Vancomyacin is a stronger med. I did three different doses of this and still had recurrent Cdiff.. There is also Difficid but it's very expensive. I ended up having a fecal transplant and that's what did the trick for me.. I've been cdiff free for awhile now. Sometimes you have to take an antidiarrheal just to function.. My drs always told me to take it easy on it, don't take it everyday but if I needed to I could take it occasionally.

 

[CarolinAlaska]

My daughter was treated twice with Flagyl and then has slowly gotten better. She had to have steroids for awhile to calm her Crohn's down and had her 6MP adjusted up. She gained weight from 96 to 116 on prednisone and has maintained it for a month off pred. She's 16. I'd ask your GI or nurse for a repeat c diff. If it is positive, treat it again. Stay away from antibiotics unless absolutely necessary. Use probiotics too if you aren't. If your c diff is neg, then maybe your Crohn's is in flare.

 

[maixmike]

Thank you for the messages here my husband is on a similar situation. He was having a flare last October and had to do a colonoscopy. His colon was severely inflamed so the doctor gave him everything he got aside from humira that he has been taking (for 2 years and had a remission), his gi gave him imuran, flagyl and another antibiotic that I forgot the name he seems to be feeling better and was able to go back to work until late January and he started getting diarrhea it wasn't that bad at first until it got worse he had to do blood works and stool exam. His GI was baffled because he was feeling good if it's another flare. When stool exam result came he was positive for c diff. We also didn't know what it was. So like missfay we started reading about it and at first we thought it was not too bad compared to his flare up. Oh how wrong we were. He was then given flagyl for 14 days again, it broke my heart to see my husband in a lot of pain. He wasn't getting any better. So last feb. 12 he had his humira shot things seems to turn from really bad to really worse he goes to the bathroom 15 times a day. My husband is a very stubborn man he tried to tough it out until the night before his sigmoidoscopy schedule, he passed out and I got really scared. In the morning we rushed him to the hosp. He was severely dehydrated. We were at the hospital for 11 days. They gave him morphine but it wasn't enough. I know what missfay was saying about this distinct smell in the stool. My husband didn't want anyone to clean him but me. They gave him IV flagyl aside from the vancomycin. We got out of the hospital about almost 2 weeks ago until last friday. His GI was skeptical because although he was feeling ok solid stools, no fever just the pain (which the doctor suspects might become chronic because the nerves might have become sensitive) his wbc was still high so he consulted another GI from wakeforest Baptist hosp. His colleague said that it's still c diff and it's in a portion of his colon that the antibiotic couldn't reach and he should do a fecal transplant. His doctor thinks that it should be his last resort because he is on immunosuppressants even the infectious disease doctor did not really encourage him to take probiotics because of that too.
Last friday, when he had another shot of Humira a few hours later, he had a slight fever. Going through all of those I got a traumatized called the doctor right away so the doc said to take vanc again. My husband like how he is tried to delay the antibiotic until last Sunday he got a fever again and this monday he got bloody stool as well. He didn't have the crazy diarrhea this time so he took the vanc again. This morning I think things are getting bad because he was vomiting like crazy. We are scheduled for ct scan tomorrow and see what happens. When will these monsters leave my husband alone??

 

[ronroush7]

I hope your husband feels better real soon.

 

[maixmike]

Me too.. he was 210 lb now he is 160. Oh yeah he's on 40mg prednisone for 2 months but tapered now to 15mg. He has severe Crohn's Disease as well as ankylosing spondylitis but the AS now is on remission i guess maybe because he lost a lot of weight. We think it's the humira that keeps making the c. Diff. Worse. The doctor said that's a possibility.

 

[ronroush7]

Me too.. he was 210 lb now he is 160. Oh yeah he's on 40mg prednisone for 2 months but tapered now to 15mg. He has severe Crohn's Disease as well as ankylosing spondylitis but the AS now is on remission i guess maybe because he lost a lot of weight. We think it's the humira that keeps making the c. Diff. Worse. The doctor said that's a possibility.

Are they talking about another biologic?

 

[maixmike]

Are they talking about another biologic?

The doctor hasn't said anything about biologic.

 

[JaimeM]

I had a fecal Transplant to recover from my Cdiff and I seriously felt better within a few days.. And knock on wood haven't had Cdiff for several months now

 

[ronroush7]

I had a fecal Transplant to recover from my Cdiff and I seriously felt better within a few days.. And knock on wood haven't had Cdiff for several months now

I hope that you continue feeling great.

 

[JaimeM]

I'm doing better now.. I had that bad flare for awhile.. Found out my inflammation was moderate to severe.. So no wonder i was having so much pain.. I was at mayo 3 weeks ago and am finally now starting my new meds.. I started the azathioprine a few days ago and have my first remicade on april 1. I have to go through a bunch of hoops since I was on remicade once before and I have Sinus tracts that could lead to fistulas.. So I have to do 3 weeks of flagyl/cipro(again, i just took it for a month when I had the microperforation) and I have to take prednisone the day before and 2 days after my first two infusions, as well as doing the normal benadryl, tylenol and methylprednisone IV during the infusion.

 

[ronroush7]

Since you are starting back up on the Remicade are they testing you for antibodies?

 

[JaimeM]

yep they did all that testing and I didn't have any.. But they are still concerned with me having a reaction, as to why I get to have all the prednisone and stuff. they will check my antibody levels 8 weeks in.. I also get to have my Liver function tests and all that stuff done weekly, but that is probably more due to the azathioprine than the remicade.

 

[maixmike]

I had a fecal Transplant to recover from my Cdiff and I seriously felt better within a few days.. And knock on wood haven't had Cdiff for several months now

Done with the ct scan and my husband and his family now are seriously considering the Fecal Transplant and put a stop to this once and for all. Yeah he was on cipro and flagyl during his flare in Dec. That lead to this. Thank you for your input it's nice to let this out and talk to other people with similar experiences.

 

[JaimeM]

I agree maixmike.. It helps to talk with others that have gone through it too.. Good luck with everything.. As weird as the fecal transplant sounds, it was seriously a Godsend for me. I had to stay off of my crohns meds for a few months after the transplant to let my immune system build back up, which then caused my crohns to spiral kinda out of control. I ended up with a microperforation and a few sinus tracts to other parts of bowel (basically the start of fistulas). So make sure he is monitored well if they do the same. The Cdiff caused my crohns to flare in the first place, so staying off my med for a few months was probably not a great idea.

 

[lisadc1]

Hi, I hate to hear of all this you all are going through. I am just recovering from my 4th C-Diff round in 17 months, three included hospital stays, all three meds - flagyl, vanco, and difficid. This last round, my team of drs. decided after the hospital stay I would be placed on teh Difficid for 14 days and then a Vanco taper of six weeks. I am FINALLY on my sixth week. My stool sample this week was clear of C-Diff and I have never been so excited. I pray this time it stays away, nine weeks total on antibiotics has not been fun. The infectious disease dr and my GI are both insistent on the Fecal Transplant if it reoccurs, saying it should have happened this last time. I just am not there, mindset wise yet.

I was taken off my Humira and now waiting to get to test and will have to start loading dose all over again. Looking at some other autoimmune issues now as well; my GI ordered them and tests did not come back well.

Keep us updated on how things go...wishing you all well...

 

[txcountrychick]

I was diagnosed with cdiff 3 times in a 7 month period, each time it went away and I felt great for a few weeks...then it came right back. Keep pushing your doctor! You know your own body. I went through 3 rounds of vancomycin, 2 rounds of difficid and finally had a fecal transplant last January...I'd recommend it to anyone in a heartbeat!