Looking for support...Remicade/UTI/C.Diff

Hi everyone,

I'm scheduled to begin Remicade tomorrow. I have a major concern. I had C.Diff in May, and recently learned I have a UTI. My IBD GI prescribed Macrobid to treat UTI infection before my Remi infusion, I'm 3 days into abx treatment. I've been having awful diarrhea since May and now I'm panicked about it being C.Diff again because I'm on an abx. This is all so overwhelming and terrifying to me. Any thoughts on what I should do? I really appreciate the support on this forum.

I am so sorry you are going through all this. I know macrobid is suppose to be a safe antibiotic( it is not known for causing C-diff as it is not a broad spectrum antibiotic), but I guess anything is possible. I would definitely ask your GI to do a stool check to see if there is C-diff. Are you taking high doses of probiotics? If not, you really should be. This will help put back some of the good gut flora that was lost. There are many brands of probiotics out there to chose from. You just have to find one that works for you. I take quite a few different probiotics myself. There is one called Florastor that is suppose to help with C-diff actually and to help prevent it. Florastor is a yeast called Saccromyces Bularrdi ( I may have spelled that wrong). Also a probiotic called culturelle is been proven to help prevent C-diff in some people. I also myself take one called 50 billion by renewlife, I take 2 a day along with the others. I have to be on them since I take low dose augmentin to prevent the bad UTI's I get.

I am unsure about the remicade. I would NOT take it until you find out for sure whether you have C-diff or not. Also it is important to wait until your UTI clears up I would think. I am not sure though about this, but I would ask your doctor to be sure since remicade is an immune suppressant and will make it hard for your body to fight infections.

I hope you start feeling better real soon.....

iriechic said:

Hi everyone,

I'm scheduled to begin Remicade tomorrow. I have a major concern. I had C.Diff in May, and recently learned I have a UTI. My IBD GI prescribed Macrobid to treat UTI infection before my Remi infusion, I'm 3 days into abx treatment. I've been having awful diarrhea since May and now I'm panicked about it being C.Diff again because I'm on an abx. This is all so overwhelming and terrifying to me. Any thoughts on what I should do? I really appreciate the support on this forum.

Click to expand...

Thanks for your input. I should have mentioned that before starting the UTI antibiotic, I'd been tested for C.Diff 5 times and all were negative. So, I suppose my GI just presumes that the Macrobid won't cause that status to change?!

Does your GI have a GI nurse that you can contact? We have been told by our GI since diagnosis that if we ever have any questions about symptoms, viruses, reactions to meds etc to call and speak with the GI nurse. She can either answer the question or contact the GI and get back to us. She is a wonderful resource and has calmed my anxieties on many occasions.

Thanks for your response, Clash! Nice to hear from you again.

My GI's nurse is...hmmm...how to put it nicely, unfortunately not like your son's GI's nurse. She's not the comforting, reassuring type. I stay with them because I really like my doctor. I will ask these questions tomorrow before infusion. The infusion center is in the same building as my GI's clinic and my GI is in clinic on Monday, so I suppose they could page her if needed. My GI is aware of everything and she wanted me on Remicade stat. I tend to educate myself more than the doctor's might prefer, but I feel it's out of necessity. When I was pregnant with my son I had recurrent UTIs and was on broad spectrum abx for over 36 weeks, ultimately ending up with an IBD. After that it's been hard letting doctor's 'steer the ship'. My functional integrative physician called this evening and assured me that macrobid is narrow spectrum (targets bladder) and highly unlikely to be problematic. If I weren't starting Remicade I wouldn't have bothered with antibiotics and just stuck with cranberry pills and D. Mannose b/c the UTI was minute & asymptomatic.

All my best to you. Thanks again for helping me out!

Were you taking probiotics while on the antibiotics for the UTI's? I also have been on low dose antibiotics for like 6 years now due to all the chronic UTI's I get. I also take lots of probiotics as well. I am undiagnosed at the moment. I have lots of intestinal pains all the time. I also take Dmannose( this is not enough to keep the UTI's away though since it only targets ecoli.) I am pretty sure that the low dose antibiotics I have been on are a huge reason for my intestinal issues as well. does your doctor think it was the antibiotics that caused your crohns disease?

Ihurt, yes, yes, and yes! I'm not technically diagnosed with clinical crohn's disease. I have pretty vicious microscopic colitis (type: lymphocytic colitis). The small pill cam did show redness in my terminal ileum though. Colitis is usually limited to the colon. I was forced to take broad spectrum antibiotics + prophylactic dose of Macrobid abx for 36 weeks during my pregnancy in 2011 (w/my son). My UTIs during pregnancy would not go away. I kept getting cultures that showed Group B Strep. I DID NOT want to take those antibiotics but my High Risk OB Practice (Perinatology Specialists w/ All Children's Hospital: http://www.allkids.org/body.cfm?id=1265 ) insisted I take them. They said that if a UTI turned into a kidney infection it could kill me or the baby while pregnant. When I asked if I should take probiotics they answered, "No, we don't want you to start taking anything new while pregnant but you can eat yogurt!!!!!" OMG.....I've later realized how stupid I was to listen to that.
My IBD GI @ Shands UF does think the antibiotics played a role. I never had MC before pregnancy with my son. I'm always asymptomatic w/UTIs, so my urologist didn't recommend treating (while no longer preg) w/ antibiotics unless I felt sick. Sorry you suffer from UTIs and intestinal issues! I hope you get answers soon.

Ughh, I am so sorry you went through all this. How awful. Doctors can be soo ignorant. The probiotics would NOT have harmed the baby at all. This makes me sooo mad about doctors! They are so closed minded! I don't think any doctor should EVER hand out a script for antibiotics without recommending probiotics as well. So negligent in my opinion.


Yes, I have heard about the Step B too. I also had that culture in my urine as well. I however was not pregnant but I was told they treat it only when one is pregnant, usually close to the time of delivery or if you have symptoms. I know I remember one gyne telling me when I was diagnosed with the strep B that I did not have to treat it, but if I were pregnant I would have to. Something about it being dangerous to the baby when having a vaginal birth.

Anyhow, I so sorry you are dealing with this. If you can, I would try and start some different probiotics. Florastor is suppose to help prevent C-diff and it can help slow diarrheaha.

I hope you feel better soon.....

iriechic said:

Ihurt, yes, yes, and yes! I'm not technically diagnosed with clinical crohn's disease. I have pretty vicious microscopic colitis (type: lymphocytic colitis). The small pill cam did show redness in my terminal ileum though. Colitis is usually limited to the colon. I was forced to take broad spectrum antibiotics + prophylactic dose of Macrobid abx for 36 weeks during my pregnancy in 2011 (w/my son). My UTIs during pregnancy would not go away. I kept getting cultures that showed Group B Strep. I DID NOT want to take those antibiotics but my High Risk OB Practice (Perinatology Specialists w/ All Children's Hospital: http://www.allkids.org/body.cfm?id=1265 ) insisted I take them. They said that if a UTI turned into a kidney infection it could kill me or the baby while pregnant. When I asked if I should take probiotics they answered, "No, we don't want you to start taking anything new while pregnant but you can eat yogurt!!!!!" OMG.....I've later realized how stupid I was to listen to that.
My IBD GI @ Shands UF does think the antibiotics played a role. I never had MC before pregnancy with my son. I'm always asymptomatic w/UTIs, so my urologist didn't recommend treating (while no longer preg) w/ antibiotics unless I felt sick. Sorry you suffer from UTIs and intestinal issues! I hope you get answers soon.

Click to expand...

Ihurt,

I agree with you completely! It infuriates me so much that I was advised NOT to take probiotics. I have been on clinical strength probiotics since my son was born. I'm currently taking VSL 3. I was taking saccharomyces boulardii but recently ran out. I have spent a fortune on supplements, probiotics, Naturopaths, LDN, acupuncture, Qi Gong, FMTs...you name it, I've tried it. I really didn't want to have to go the route of steroids or biologics, but I wasn't having quality of life racing to the bathroom sick. My family will be elated when I'm back in remission. Keeping hope that it's right around the corner.

I'm not sure if you have/ plan to have children, but if you get UTIs while pregnant, DO see if it's possible to just treat the 6 weeks before delivery. I wish that had been an option.

Wishing you the very best!!!

Yes, I hear ya, I also have spent a ton on probiotics and supplements as well. It can get very expensive very fast. I mean you have to do what you have to do in order to get your quality of life back. I have one son, I do not plan on getting pregnant again though. I have way to many issues going on. I am very prone to UTI's. I also have a disease called(IC) Interstitial Cystitis which Is a bladder disease and is just God awful. Having this makes me more prone to getting UTI's. The IC causes the bladder to become inflamed and causes pain, urgency and frequency. My biggest issue with it when it is flaring is Pain. The only thing that helped me was being on long term antibiotics. It is like a double edge sword though because antibiotics are also not good for anyone either, especially long term. But I have no choice. I mean other wise I get infections and have to be on full dose antibiotics. I figure it is safer being on the low dose. But that is why I take tons of probiotics.

I am sorry you went through all that though. I hope you get into remission very soon.

iriechic said:

Ihurt,

I agree with you completely! It infuriates me so much that I was advised NOT to take probiotics. I have been on clinical strength probiotics since my son was born. I'm currently taking VSL 3. I was taking saccharomyces boulardii but recently ran out. I have spent a fortune on supplements, probiotics, Naturopaths, LDN, acupuncture, Qi Gong, FMTs...you name it, I've tried it. I really didn't want to have to go the route of steroids or biologics, but I wasn't having quality of life racing to the bathroom sick. My family will be elated when I'm back in remission. Keeping hope that it's right around the corner.

I'm not sure if you have/ plan to have children, but if you get UTIs while pregnant, DO see if it's possible to just treat the 6 weeks before delivery. I wish that had been an option.

Wishing you the very best!!!

Click to expand...

Yes, I hear ya, I also have spent a ton on probiotics and supplements as well. It can get very expensive very fast. I mean you have to do what you have to do in order to get your quality of life back. I have one son, I do not plan on getting pregnant again though. I have way to many issues going on. I am very prone to UTI's. I also have a disease called(IC) Interstitial Cystitis which Is a bladder disease and is just God awful. Having this makes me more prone to getting UTI's. The IC causes the bladder to become inflamed and causes pain, urgency and frequency. My biggest issue with it when it is flaring is Pain. The only thing that helped me was being on long term antibiotics. It is like a double edge sword though because antibiotics are also not good for anyone either, especially long term. But I have no choice. I mean other wise I get infections and have to be on full dose antibiotics. I figure it is safer being on the low dose. But that is why I take tons of probiotics.

I am sorry you went through all that though. I hope you get into remission very soon.

iriechic said:

Ihurt,

I agree with you completely! It infuriates me so much that I was advised NOT to take probiotics. I have been on clinical strength probiotics since my son was born. I'm currently taking VSL 3. I was taking saccharomyces boulardii but recently ran out. I have spent a fortune on supplements, probiotics, Naturopaths, LDN, acupuncture, Qi Gong, FMTs...you name it, I've tried it. I really didn't want to have to go the route of steroids or biologics, but I wasn't having quality of life racing to the bathroom sick. My family will be elated when I'm back in remission. Keeping hope that it's right around the corner.

I'm not sure if you have/ plan to have children, but if you get UTIs while pregnant, DO see if it's possible to just treat the 6 weeks before delivery. I wish that had been an option.

Wishing you the very best!!!

Click to expand...

oops, sorry for the double post, don't know what happened there

Haha, no worries about the double post. The term interstitial cystitis has been thrown around about me, so I understand. I get frequency but not really pain. At 29 wks preg I had bleeding and they suspected IC. I've been told once IBD is controlled, UTIs should follow suit (b/c the vicinity of bacteria for a woman). I take cranberry & D.Mannose regularly. I just hope that my flare stops soon. I can hardly take it anymore. My GI is ultra-busy so I don't know how to see her soon. I've been on the verge of going to the hospital but don't want to pick up something worse there. IBD is awful scary, esp w/ my history of C.Diff. My very best to you. If you ever need to vent about UTIs/GI issues, I'm here & completely understand!