Crohns and ABX - Suggestions for a new case

Hello to all,

I was diagnosed with CD one year ago and have been since trying to get my symptoms under control. I’ve had 8 relapses over the course of this time period and I am seriously doubting the initial diagnosis. I’ve been to many specialists, GI’s and others that do not seem to understand this condition. They all offer generic answers and solutions.

Here is how it all began:

I had a Sinus infection and was prescribed Zitromicin for 7 days. Diarrhea started immediately and at that time I did not knew about probiotics and tried to ride it thru. After finishing the 7 day course, the diarrhea did not stop and I ended up in the hospital 1 week later. I was diagnosed with ileocolitis on that stay.

I was sent home with antibiotics, Flagyl and Cipro and felt fine. I started to combine them with probiotics and it all went well. After I finished the antibiotic course, 2 weeks later I was back in the hospital with the same symptoms (diarrhea, some blood in stool, body felt like I had the flu) . I was sent home with antibiotics, felt good while on them and a couple of weeks later I relapsed and was back in the hospital for 21 days with a severe colitis. Had a colonoscopy, endoscopy and all sorts of exams to diagnose what I had. I was diagnosed with Crohns back then.

After that hospital stay, they sent me home with 4 types of antibiotic (Flagyl, Cipro, Diflucan and other one I don’t remember) alongside Prednizone and then 1 month later I started Remicade. While on ABX I felt wonderful if they were combined with probiotics. Once I started Prednizone and Remicade it almost made me go crazy with all the side effects, but I continued anyway.
This time the ABX effect lasted longer, but eventually I fell again with a relapse and was sent to take Remicade (4th infusion) anyway because it was supposed to make everything better even when I was weakened, anemic and with very low defenses. One week after the infusion I was worse and ended up in the hospital with C Diff. Was given Flagyl, Cipro and Vanco and felt immediately fine.
After that experience, I quit Prednizone, Remicade and have been using probiotics (VSL#3 and Jarrows S Boulardi) as well as following a strict diet (no fried foods, no sugars, etc etc). I started feeling way better than I was before. I still have had 2 or 3 relapses, but If I take Flagyl the next day I’m fine.

After that long story, any suggestions into what I should look into? I don’t trust doctors anymore and even when I’m seeking other opinions at this moment, I don’t know what to think or who to trust.

Any help is greatly appreciated.

Thanks!

I am having similar issues when weaning off vancomycin. I feel better when on them. I am now on Cimzia again (fourth time) and it is not working that great for me.
Maybe you can try a different biologic such as Humira or Cimzia.

Good luck!

I'm glad you've managed to find a solution that works for you Eddie!

Your case is very interesting to me. I've been on Remicade for a year and have only seen my health decline while on it. I certainly have doubts about continuing. Unfortunately, I'm not sure that ABX are the solution for me as I tend to have bad reactions to them, sometimes GI related, sometimes other.

In the last month or so though, I've consciously decided to start focusing on more natural health treatments by changing my diet (low sugar, low carb, low gluten) and increasing supplements (Vitamineral Green--which includes a lot of probiotics--as well as l-glutamine, vitamins D, B, C, and magnesium). I haven't noticed any real benefits yet, but I'm staying positive. I've also been battling a nasty sinus infection for the last three months, which isn't helping.