Hey everyone

I have been a reader but i never write anything, otherwise here i am.

Im 22 years old and been diagnosed with uc at the age of 15aporx. I have remove my colon in 2011 in 3 op and have the j pouch since then.

I was  fine until november 2015, it started with a small pouchitis but it went out of control. My weight was 60kg and i lost about 15kg, ended up 2 weeks in the hospital. I spend new year in the hospital until the start of January. In january i started with humira , and im taking 1 aplication every two weeks. It worked fine but i still need to be better, so in september 2016 i started with azathioprine in a low dose.

I never recover like before the pouchitis, im waking up 3 or 4 times at night and i usually wake up 1 or 2. I use loperamide sometimes , it works, but its not a big thing

This last two weeks i cant hold it when i wake up in the middle of the night and i cant reach the toilet. My doctor says to start with entocort pills everyday with bactrim twice a week, but i have other doctor that told me to use suppository. Do you know anything about entocort??? I dont want to take more drugs so i am considering in the suppository

 

On another hand, Does anyone tried cannabis oil? i am getting some from uruguay to try

 

Original Post

I'd probably choose rectal administration ( like cortifoam) over entocort, but both are intended to reduce steroid exposure to the rest of the body. These would more commonly be used for cuffitis rather than pouchitis. Has anyone said you have cuffitis?

It sounds like the Humira isn't working very well. You don't mention Cipro or Flagyl, though you may have used them. Either of these can work very well for pouchitis, as can other antibiotics.

Good luck!

I needed weekly Humira when I was on it. Also, switching to a different biologic is not a bad idea. I am having good results with Remicade right now. Hopefully, the azathioprine will help, but it generally should be started before you go on a biologic. You may have already developed antibodies against Humira, so it may not work.

I would also prefer rectal steroids over Entocort, but a number of folks here have had decent results with it. Is your doctor thinking you have Crohn's now? Entocort is common for Crohn's.

Jan

Scott and Jan, thanks for your answer,

My doctor saw me on saturday and told me i have some cuffitis, he didnt see upper part so i dont know how the pouchitis is. but the blood test the c reactive protein is a little high, i hope its only for that 

I am starting with cipro and flagyl every 12hs for two weeks and cortifoam at night(rectal administration). I hope it will get better.

One doctor thinks that i could have crohn but he s not sure.

Jan how long did you take humira? do you leave it for remicade or you are getting both? Have yo travel with humira?

I took Humira for a couple of years, but it was for arthritis, not pouchitis/cuffitis. Then, I switched to Simponi, then Cimzia, and now Remicade. Always just one biologic. You never take more than one.

I did travel while on Humira, but only when I was on it every two weeks. I planned my travel between injections so I did not have to deal with keeping the syringe on ice. Simponi was once a month and Cimzia was every two weeks.

My Remicade schedule is every six weeks.

Jan

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