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Iritis, Uveitis and Crohn's , Oh My!

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 head 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.
I am lucky to be relatively healthy, I am married and have two kids now.
Sometimes I worry if the will inherit this...I guess I worry a lot. Some people say worry and stress can bring on a flare up, so I'm doomed.:ywow:
 

David

Co-Founder
Staff member
Hi Pumpkin and welcome! I apologize that we were a bit delayed welcoming you to the forum :(

Unfortunately, Crohn's does indeed affect some people's eyes. It's not one of the more common complaints, but it certainly pops up on the forum from time to time. I sometimes wonder if it's more common than we realize, but people don't attribute the eye issues to Crohns but rather to normal aging or such.

Anyway, I'm glad you found your way here and hope to see you around :)
 
hello,i have chrohns and i have had 2 episodes of iritis ,only in my left eye,i was also treated with steriods and dialation drops,its connected with the disease,its one of the side affects of it,i was told that it could reacure or i might never get it again,i was lucky cause i i had left it it could have blinded me ,take care ,cheryl
 
I have a very similar story to you. I have had iritis uvitis for the last 3 years. about 1 and half years into it i got diagnosed with crohn's. I have actually not yet had intestinal symptoms. I had heartburn which sent me to the GI. I also have arthritis which has a hire insendent of eye inflammation associated with it.

Last weekend i realize was 2 year anniversary of my eye biopsy. when i was being diagnosed. I also had the blood test for everything under the sun to see what was causing it. I was only diagnosed because of a GI doctor with a lot of curiousness. For that
I was lucky more then anything.

My eyes have slowed now thanks to humira but have been damaged so they now have non-autoimmune inflammation issues, annoyingly as painful as the autoimmune inflammation.

do you have glaucoma in your family? So far my pressure is normal but my mother and her mother have/had it so i am sort of waiting for it show up.

Are you on any eye drops now? I am on xibrom (now called something else) as maintenance.

Welcome. your defiantly not alone
 
Pumpkin & Outlier,

My story sounds very similar to both of yours. I've had uveitis/iritis for 3 years and arthritis in my feet and hands, and just 4 months ago I was diagnosed with Crohn's. The diagnosis was almost by accident when my doctor noticed my iron was low (I didn't really think anything of my GI issues... I had loose stool but it didn't interfere with my life so Crohn's had never been considered). He ordered a colonoscopy where these found ulcers and inflammation. I've been on Sulfasalazine for 4 months now (4,000 mg per day). I have noticed an improvement in my stool and my arthritis is almost gone. However, I did just have another flare in my eyes (during a taper from prednisone drops from a flare prior to starting ssz). I know that Sulfasalazine doesn't fully work until 6 months into the treatment. I'm happy to hear I'm not alone in how the onset of Crohn's manifested itself, anyone else out there have the same story as myself, pumpkin, and outlier?

Does anyone have experience with sulfasalazine and improvement of uveitis/iritis flares?

Thank you-
 

CrohnsChicago

Super Moderator
I was also a bit of a partier. Would get sick often but thought nothing of it.

Around 5 years ago, I started developing sinus issues that I couldn't shake. 4 years ago I would wake up with a puffy face now and then. One day my face got so puffy you would think I had an allergy to bees and one had stung me, went to the ER they couldn't figure it out I blamed it on my anxiety meds because they were new and it was the only thing that made sense in my mind. They said it wasn't but I didn't leave until they had my doctor change my medication.

3 years ago I woke up with a stinging headache on one side of my temple that didn't go away. After two days it turned into pain around my eyes, but other than that I felt fine. I took aspirin and hoped it would go away. On the next day, I woke up one morning and my vision was completely blurry! I went to the mirror and saw white particles forming at the bottom of my iris. An emergency trip to the eye doctor revealed I had iritis/uveitis (in the front and back of the eye). It took TWO MONTHS of prednisolone for it to clear it up. During that time I had to live not only with floaters, but with seeing what seemed like thousand of white blood cells float around in my field of vision. The scariest experience of my life...I thought I was going blind. Eventually it went away, but I needed bi-weekly monitoring and even after x-rays, STD tests, blood tests, and more which came out perfectly normal, the eye doc could not explain why it had happened.

During this period and after, I was under major stress in my life at that point from a variety of factors. I started to develop IBS symptoms that came and went. I thought nothing of it and went about my business. Last year I developed sinus issues again including infections and was constantly placed on antibiotics and aspirin. It wasn't until this year that I had my first flare and was diagnosed with crohn's. I told my GI on my first visit about the uveitis and he told me that it absolutely could have been a sign of crohn's before the flare presented itself.

After dealing with crohn's and learning more about my body this year, I have learned that I am one of those people where crohn's shows symptoms through manifestations...primarily my eyes, skin and gums.

Anyway, I wanted to tell you my story to let you know you are not alone and this is can be common for crohn's patients. It's important to learn to understand your body even more now so that you can be more ready and able to identify signs of crohn's symptoms and get the earliest treatment.
 
CrohnsChicago- Thank you so much for your reply. It does make me feel better to hear your story and know I'm not alone.

How is the Asacol working for you and have you had any additional uveitis flares? Unfortunately, mine have been constant for the last 3 years (lots of steroid drops, injections, oral steroids, and even daily NSAIDs at one point) . But I'm holding out hope that maybe Sulfasalazine will help me out. I'm curious about Asacol as maybe that could be in option for me if the ssz doesn't work. We'll see!
 

CrohnsChicago

Super Moderator
Sorry to hear about your continuous uveitis. I have never had another uveitis scare, thankfully. It must be frustrating and scary to have to deal with on a regular basis. Just once was scary enough for me! But I absolutely get your experience.

My crohn's is moderate-to-severe (i have ulcers and bleeding inside my colon and terminal ileum) so Asacol is holding my flares at bay, but not well enough. I have had two major flares this year and it seems like every time i get off of prednisone, the Asacol isn't strong enough to work fully on it's own and the bleeding inside comes back a little. My understanding is that Asacol and Sulfasalazine both contain the same active ingredient (5-ASA). The only real difference is that sulfa is cheaper and may have more side effects.

I am working on getting bloodwork done to start Imuran treatment within the coming weeks. We will see what happens.....

Where is your inflammation located? Do you know the severity of the inflammation?
 
I have dealt with Iritis flares about 5 times in the last 9 years. I was treated by an ophthalmologist with prednisone and dilating drops and got it cleared up each time. I also see a rheumatologist who has run all kinds of tests for flare ups in my hip, foot, neck, etc. She prescribed generic Plaquinel for my arthritis because I could not take drugs that would affect ulcer. It has helped keep the flare ups to a minimum. I had a colonoscopy 9 years ago and had an ulcer in my colon, but, did not test positive for crohns. I was told not to take ibuprofen, nsaids, because of the ulcer. This spring, 2019 I got a diagnosis of crohns. I am still going through some more testing and have not taken any medication yet. I feel good and the main symptom I have is constipation, and some fatigue(which I attributed to my age). 18 years ago I was very low on iron, but, they didn't find a cause. My blood work came back all in the normal range a few weeks ago. I have had high inflammation levels in the past, but, it is good now. I have had thyroid and parathyroid problems, but both are good now.(I take Levothyroxine for thyroid and had surgery for parathyroid 10 years ago). I am curious to see what treatment the Doctor recommends. It seems like there is a lot of trial and error to find what works. Also, wondering about the side effects of medication. I am pretty active and still work part time. I turned 70 in May.
 
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