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Hi guys.  I disappeared in the Fall because my body started doing all manner of wacky neuro things.  Still not back to work.  Just started Humira - my pouchoscopy had severe inflammation from last week with ulcer beds.  This means I failed retention enema and oral mesalamine taken at the same time.

The kicker though is the neuro symptoms that started on my right side in Sept. I can go into more depth -- but for now -- I was told that I was presenting like someone with a traumatic brain injury.  Not.  Kidding.  Sensory overload, issues with short term/working memory, inability to multitask, ambient visual disturbance (like stores or windshield wipers would cause dizziness and nausea).  

I have been throughly poked, prodded, and zapped like a lab frog.  Only change is positive Sjogren's Syndrome antibody.  It has been a weird ride...hoping the Humira works.  Having my stricture stretched 4 times in 5 months is not pleasant.  This last time I did it under sedation -- and I remember feeling it through the fentanyl and versed.  

Thoughts on Humira and pouch?  Thoughts on recurrent strictures (with or without Humira)?  Now have extraintestional joint stuff too.  

Missed you all!  I will try to be more regular.  If I remember!!!  (hence the brain fog)

 

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Humira worked pretty well for my pouchitis and my arthritis too, at least until it didn't. I moved from Humira, to Simponi, to Cimzia. Soon I will be starting Remicade and azathioprine.

But, I have not had the neuro problems you relate. Mine are all peripheral nerve issues from nerve root compression and entrapment. No central neurological issues (so far).

Jan

Had pouchoscopy and have chronic pouchitis, which explains a lot of my symptoms. Started taking Cipro with good results. I took it for 6 weeks and then stopped when the prescription ran out. Went right back to the same symptoms, started taking Cipro again, was good for a few days and then returned to previous syptoms. Think I have become resistant to the antibiotics. Thinking about taking Humira. Any thoughts…

 

But, it sounds like Cipro may have failed you, but that doesn't mean "the antibiotics" have failed. There are plenty of choices, most of which are completely different from the others. If you can't find a single one that works, combinations can be effective. When Cipro stopped working for me I added Flagyl, and that's been good for a couple of years so far. 

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