Iritis/Uveitis for 10 years before diagnosis

[AndreaN]

Hi Everyone,
My story is a little different, but also very much the same. About 15 years ago
I was living in a Boston apartment with my friends, working, dating, drinking and having a ball. One morning I woke up with an awful cramping pain on the top part of my right foot. I ignored it, and went to work. As the day wore on my the top of my foot started to swell and the pain was still there, hmmm. That's strange, don't recall hitting or bumping it?
Three days of this and my mother urged me to see a Dr. They did an x-ray,
poked and prodded but could not figure it out.
A few days later I woke up with eye pain. Just like the foot, I went to work and tried to ignore it. As the days wore on both my eyes started to get very red and my vision was getting dark.
I went back to my Dr. she took one look, said she had never seen anything like that and told me to go to emergency. ok
My mom took me to Mass Eye and Ear Infirmary, one of the best hospitals in the world for eye issues.
I was immediately diagnosed with bi-lateral Iritis/Uveitis and started using pred drops and dilating drops. I was "lucky" to become a patient of the head of cornea after many other Dr's gave up treating me with no success.
This Dr. left almost no stone un-turned, I had full body scans, AIDS tests, STD, Lyme, Rickets, Xray and many many tubes of blood taken for analysis. Could not find any reason for my terrible eye troubles.
Anyway, this story is getting too long so I'll just sum it up.
After 10 years of topical steroids in the eyes, cataracts, glaucoma surgery and stress I was finally diagnosed with mild to moderate crohn's.
Since being diagnosed I have been taking Asacol 2400mg twice a day, and cipro when needed for flares.
I never really had any typical crohn's symptoms until I was diagnosed, just the eye issues and that's the weird part. Has anyone else had this happen?
I try to be positive, and not dwell on things too much. But I do feel anger and sadness and frustration from time to time, especially when I get a flare.

 

[Clash]

Welcome to the forum. My son has Episcleritis and has to see an ophthalmologist for check ups since he's concerned other eye EIMs may show up for him with CD.

Hopefully some others with a similar experience will be by.

Just want to send a hug!

 

[Lady Organic]

eye inflammations can be extra-intestinal manifestations of IBD. Just like arthritis, it can start years before the intestine onset. Or the intestinal issues can be so mild that they can go unnoticed. the foot episode seems like it was an arthritic episode. uveitis is also seen in rhuematology disease. I know a family with a teen boy with ankylosing spondyloarthritis since he was 2 year old, another chronic inflammatory condition of the joints, and he also has repetitive uveitis. His mother has had uveitis all of her life too, but has never developed joint issues. The boy has been investigated recently for intestinal issues and colonoscopy revealed mild ulcers, but no diagnosis has been given to him... Hes being treated all his life with sulphasalazine and that seems to be enough for both his joint and intestine issues.

 

[AndreaN]

On a side note, I have recently started the SCD diet. I have always been skeptical about diets for cures/remedies, but my most recent colonoscopy showed much more inflammation and my Dr. now says I am moderate to severe crohn's. This is the most restrictive diet I've ever been on and it's costly. Almond flour goes for between $10-15 for a tiny bag! Anyway, I will post on the site about how it's working...So far I've been slightly constipated, which is very unusual for me!!

 

[Lady Organic]

any major change in diets is always costly at the beginning because you have to start your food cabinets all over. Plus you wont drink or eat as much in restaurant, so that will be a great save in money. You'll come to find tricks and alternatives. i invite you to fallow the link in my signature for IBD-AID which is greatly inspired by SCD. THey give additional interesting info on what to focus during diet to optimize the gut flora. let us know how it goes, good luck!!!