Having been a sufferer of chronic pouchitis for the majority of the time after my take down I was put on the above trial back in August. This consisted of administering enemas for a six week period of either the drug or a placebo and then trips to the hospital for check ups. I'm approaching the end of the study when I will find out whether I've been taking the drug or not.

To date the only positive to come out of this is that I'm off the antibiotics and have been since August last year! But, my trips to the bathroom have not diminished and on average I visit 10 times a day...I will know in about 6 weeks the outcome after a follow up hospital visit and I'll let you know what it is!

But what I have discovered by accident is that my frequency was reduced by buying multigrain porridge and under-cooking it. On my best day I didn't use a bathroom for 6.5 hours! Sadly I can't only eat porridge, but for the daytime this has proved fantastic!

 

 

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I found long cooking steel cut oats had a similar effect on me.  But I don't undercook it - it is too rough that way for me.

Is the study you are referring to at NYU? If so, is the diary aspect manageable? How often and when does it demand you answer questions? I wanted to do that study but that part put me off - what if I am totally unavailable - like with a doctor or in an excercise class?

 

Hi! I hopefully will start the Alicaforsen here in just a bit...I just finished the first part and now I'm waiting to get the go ahead after they review all my biopsies and blood work and such.  I have three ulcers in the pouch that I hope will heal while on the trial.  Like you know, I won't know what I'm getting until after it's completed.  Wondering if your pouchoscopys looked better while on the trial...

Yes, my pouchoscopys were better! I still don't know whether I was on a placebo or not and won't know until after the whole trial is completed but have been offered the drug when it's released. I hope it goes well for you :-)

 

Thanks so much! This gives me hope! I was so worried about making the right decision... Dr. Shen at the Cleveland Clinic won't lead me in the wrong direction and will keep a close eye on me to make sure my symptoms don't get worse.  As you know you can opt out at any time if things get much worse.  Thanks for letting me know and please let me know what you got, okay!?! It was either this or Entivyo or hyperbaric oxygen treatment...

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