When will it end?

[jclynn0212]

I was recently diagnosed with Crohn's Disease as well as some form of colon infection. The results were some what inconclusive. Blood work and images from a colonoscopy suggest Crohn's. However, biopsies from the colonoscopy said infection. I have been on Flagl for 3 weeks and just finished it today. I had already been on it 2 weeks when she realized there was an infection. She had me take it one extra week but told me if I took it any longer, I risked ending up with permanent nerve damage. I don't know if the infection is gone now or not. She put me on an anti inflammatory to help but so far I still can't eat many solid foods. For the last 6 weeks I've been eating jello, Campbell's chicken noodle soup, eggs on occasion, a few crackers, and mashed potatoes. If I eat meat of any kind or anything else, about 3 hours after I eat, the pain is so bad I throw up and want to die. I've lost 30 lbs and counting. From what I've read, this is considered a flare. I've been on these anti inflammatory pills for a week. I can't tell they are helping. How long can this last and is there anything I can do to help it?

 

[Lizzie]

If it's Crohns I'm not sure if anyone can tell you how long a flare will last. I seem to have been in one long non-stop flare since my disease started, though I think only about one in ten people are in this situation statistically. One doctor I saw (not a GI admittedly) told me my flare should last two or three weeks ... if only! Maybe a few weeks is the norm?

 

[jclynn0212]

If it's Crohns I'm not sure if anyone can tell you how long a flare will last. I seem to have been in one long non-stop flare since my disease started, though I think only about one in ten people are in this situation statistically. One doctor I saw (not a GI admittedly) told me my flare should last two or three weeks ... if only! Maybe a few weeks is the norm?

I'm with you...I wish it was only a couple weeks. I feel like I'm starving to death.

 

[ronroush7]

Can't be sure but you may need to be on something stronger.

 

[TeenyYogini]

I agree, you may need to ask about more aggressive treatment options. Best wishes to you!

 

[wild_one353]

You may also have c difficile infection besides crohn's. The FDA approved Fecal Microbiota transplants for C diff patients that fail antibiotics, maybe that is what is next or perhaps you should ask them about it or maybe you have to find a GI or hospital that does this. FMT may also help your IBD symptoms. Some peoples IBD may have been cured by FMT as some scientists have observed, however it is unlikely one FMT will cure the IBD, it will definitely get rid of c diff though 90% of the time 1 FMT will eliminate it and 99% of the time after 2 FMT's.

here is a list of doctors that can do an FMT http://thepowerofpoop.com/epatients/where-to-get-fecal-transplant/

more info on FMT
http://www.hopkinsmedicine.org/gast...advanced_endoscopy/fecal_transplantation.html

 

[TeenyYogini]

Another thought - a positive biopsy is NOT necessary to diagnose Crohn's. Unfortunately, I wasted some time with a GI who was uninformed and refused to diagnose me based on what he had seen in the colonoscopy alone. He was fixated on the inconclusive biopsy and didn't even suggest that we look into my small intestine. I asked for a referral to a true Crohn's specialist, and she diagnosed me based on the images from the colonoscopy alone. She also ordered a capsule endoscopy and ultimately, I was diagnosed with moderate Crohn's of the small intestine. Try and push past "inconclusive" if you can.

 

[jclynn0212]

Can't be sure but you may need to be on something stronger.

Thank you. I'll talk to her about it.

 

[jclynn0212]

You may also have c difficile infection besides crohn's. The FDA approved Fecal Microbiota transplants for C diff patients that fail antibiotics, maybe that is what is next or perhaps you should ask them about it or maybe you have to find a GI or hospital that does this. FMT may also help your IBD symptoms. Some peoples IBD may have been cured by FMT as some scientists have observed, however it is unlikely one FMT will cure the IBD, it will definitely get rid of c diff though 90% of the time 1 FMT will eliminate it and 99% of the time after 2 FMT's.

here is a list of doctors that can do an FMT http://thepowerofpoop.com/epatients/where-to-get-fecal-transplant/

more info on FMT
http://www.hopkinsmedicine.org/gast...advanced_endoscopy/fecal_transplantation.html

I'll definitely do my research and talk to my dr about it. Thank you.

 

[jclynn0212]

My doctor prescribed me Pentax 250mg 4 times a day. Is that a good prescription for a flare?

 

[ronroush7]

Do you mean Pentasa? If so that will only hit the surface of the problem.

 

[jclynn0212]

Do you mean Pentasa? If so that will only hit the surface of the problem.

Yes that's what I'm taking. The Crohns on the colonoscopy didn't appear severe. At least not yet. Just getting started.

 

[ronroush7]

OK. Thanks

 

[jclynn0212]

OK. Thanks

Do you think it will it help if it's still new and not severe?

 

[ronroush7]

It might . I am not sure. Let us know how you are doing.

 

[kiny]

I asked for a referral to a true Crohn's specialist, and she diagnosed me based on the images from the colonoscopy alone. A positive biopsy is NOT necessary to diagnose Crohn's.

You will find most specialists will strongly disagree with that. Diagnosis without biopsy and histology isn't conclusive, there are plenty of diseases that mimick crohn's disease that can't be properly differentiated without a biopsy. A diagnosis without a biopsy test is not a proper diagnosis.