Wow - it has been a LONG time since I've posted or replied here on the j-pouch site. Glad it is still in good shape!

Speaking of good shape (or not), I'm doing okay at 50 yo, with a 13 yo j-pouch. My j-pouch is humming along without much to complain about at all.

Outside of that, however, I am seeing more and more manifestation of the underlying inflammatory disease as I get older. I had posts previously trying to figure out my back and joint pain issues. Rheumy concluded it's probably a combo of mechanical (osteo) and inflammatory arthritis. Sed rate and CRP numbers always look good for me. Of course, my 16 yo daughter with her 8 yo j-pouch just started seeing my rheumy for her arthritis and her Sed rate and CRP also look fine. However, the GI docs at Children's Mercy have her give a stool sample to look at her calprotectin #s. This year she was at about 150, and the prior year she was at 600+ (normal is 10-60). So that shows she still clearly has inflammation issues.

Anyway, last year I got bronchitis turning into probable pneumonia, 3-4 months and 3 antibiotics before clearing up. Both pneumonia vaccines after clearing up and asthma issues like I haven't experienced before. Finally my allergist tried throwing everything at me: prednisone (just in case), albuterol nebulizer, two different corticosteroid inhalers, Singulair, and cutting off my sulfasalazine (little known fact that doctors have known since the 1960s: rarely, sulfasalazine can contribute to lung disease - which typically clears up after stopping it). My allergist also convinced me my asthma was aggravated by reflux (did you know that "non-acid reflux" is a thing? I didn't before him). And without the sulfasalazine my reflux is a worse problem. However... the Singulair was a life saver for me. Helped me a TON.

So - finally to my topic For months now I have had eye irritation, periodic pain like someone poking needles in my eyes, light sensitivity, periodic blurriness and vision issues, etc. Going to the eye doctor on Thursday to have my eyes assessed for uveitis. I guess scleritis is another possibility. Ugh.

Anyone have thoughts / advice re: uveitis and the visit to the eye doctor? Can't afford to have them miss a diagnosis if this is what it is.

Oh yeah - and my poor daughter seems to follow me to every doc I have now. First, to my rheumy for her arthritis. Now she seems to have some asthma symptoms (likely reflux too) so she's going to see my allergist next week. She'll get to go to my surgeon for her j-pouch annual visits in a couple years. Hope she doesn't keep following me around to these guys. Genetics...

Thank you!

 - Steve

Original Post

About a decade post colectomy I developed enteropathic arthritis and have been on one biologic or another since then. Another decade later I developed dry eye syndrome and have been on cyclosporine drops (Restasis) since then. I still get periodic sudden eye pain and redness and use steroid/antibiotic drops for that.

Just a little over a week ago I wound up in the ER on a Sunday with severe eye pain and redness. It felt just like a corneal abrasion, but there was no injury found. Ophthalmology was consulted by phone and the same drops were ordered. I have never had uveitis confirmed, but this very well could have been. Long story short, it turned around quickly with treatment.

Jan

I've had uveitis 3-4 times, quite some time ago.   Each time, my symptoms came on fairly suddenly and severely.  I went straight to an opthalmologist, since my left eye was SO sore, red, blurry, and sensitive to light.   Tell your dr. your history and your suspicions, they will look in your eyes with a slit lamp (if I recall the name) and see the inflammation and can diagnose it right then and there.   My optometrists have also checked with a slit lamp, and told me they too could treat the uveitis.  I was given steroid drops and also those drops that dilate your eyes to prevent scarring, if I recall - had to use these several times a day, not fun.  I'm not sure that your symptoms are indicative of uveitis, but as I said, it's relatively easy for these eye drs. to diagnose.  Sorry you're experiencing all these problems.  

I've also had uvevitis - there was no mistaking it.  I came on very quickly,  I had to wear sunglasses indoors, and the pain was over the top.  Steroid drops relieved it.   If you get severe redness and pain and light sensitivity do not wait around, the inflammation can damage eyes if not treated promptly.  

So... eye doc did a thorough exam of front and back of my eyes. Noted some inflammation in the front of the eyes, and talked a lot about my "tear shield." She is attributing some of the issues to looking at screens all day. Did give me some pred eye drops + a non-steroidal anti-inflammatory drop after a week or so of the pred. Also recommended a eyelid cleansing wash - said it might help with the "tear shield." No uveitis (of which, frankly, I'm glad).

The only weird test she did was un-dilated. Told me to close my eyes and then open and keep open without blinking as long as I could. She had her light shining right into them when I opened. The right eye - man! That was painful - just like the pain I sometimes experience. 

So anyway, the eye inflammation may or may not be inflammatory disease related. Seems to be my diagnosis for a lot of things (eyes, back / arthritis, etc.). I guess I should be happy to be in an indeterminate place? And that when my UC went nuts, there was no doubt about it (it was not indeterminate).

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×