Introduction:
Central Retinal Vein Occlusion and Macular Edema.
Yes… I am writing about eyes. I have had UC for over 31 years now. About 6 years ago I had what is called a CRVO (Central Retinal Vein Occlusion) It is when there is veins in your eye that leak and cause visual problems. It is quite serious. How I knew I had it…in the middle of the night I woke up and parts of my vision were missing. ie: held my hand up and only saw part. It resolved itself in a few weeks…a few weeks later I had macular edema. The macula in your eye swells and holds fluids. Avastin injections over many months helped to alleviate it. Never had a rhyme or reason for it. They said it happens. I went to a neurologist last week because my vision quivers in that eye. Again no one knows why. Neurologist told me CRVO and Macular Edema is common in UC. REALLY?? Have any of you had it? (I am running out of words here) Link w/info: http://www.researchgate.net/publication/12886728_Central_retinal_vein_occlusion_during_remission_of_ulcerative_colitis Copy/paste this and let me know!! I never heard of this in UC before. My GI never said anything either. THANX!
central Retinal Vein Occlusion from wikipedia: http://en.wikipedia.org/wiki/Central_retinal_vein_occlusion
Some more about me:
I am from Western Pennsylvania. 58 female. 31+ years with UC…almost half my life! Have 3 children…was diagnosed 9 months after birth of 2nd. Very easy pregnancy with 3rd child. Healthy & normal…was off meds whole time. Felt great! Only been hospitalized once for UC and that was within 1st year. Flare off and on. Been on prednisone for most of the 31 years. (Had to have my appendix out on 12/21/12..curious if UC patients have their appendix) My bone mass is great…no issues. I take Mercaptopurine, Prednisone and Apriso. Never lost work due to UC. Always made it one way or another. I love to cook and eat…starting to sew again. You won’t find me hiking or running anywhere! Oh yeah…On Tuesday I donated blood for the first time ever!! They always told me I couldn’t because of UC & medications I was on…this time they let me.
Symptoms:
I believe I am doing pretty good right now. However about once a week I get the mucky murk in the toilet. Do not know why. Do the others that appear to be in remission have this happen? I try to rest as much as possible whenever I can. I get tired easily.
20+ Questions for the Longtime UC Patient
1. Did any of you have a CRVO and then Macular Edema? Either/or or both?
2. Do you have your appendix? Removed before or after diagnosed? Any difference in your symptoms?
3. Are you able to donate blood? Do you?
4. Even in remission due you get tired a lot? I have a very difficult time getting moving in the morning…just so tired.
5. No matter what ache/pain/complaint I have the docs blame it on UC…inflammatory process.
Do you have undiagnosed nuisance things happening in your body? ie: a pain that hangs around in an appendage (arm/leg/hand/foot) for months and months and one day goes away only to be replaced by a nagging pain in another spot?
6. My heart will race (up to 140 bpm) at a resting position…does this happen to you? I am on Atenolol and it does help. But there are times it happens and I am doing nothing…laying down watching TV!
7. antibiotics…Do any of you ever get prescribed them? Do they cause you to flare up? 2 months ago I got an infection in my finger…the General Practice doctor was very concerned and sent me to an orthopedist. She also prescribed doxycycline…’supposed to be easy’ on the gut. Well with in 2 days, I was waking up with intense pain in my upper right side. Then I started to flare. My gastro said it was very hard on gut. I quit taking it. My finger is still swollen…no rhyme or reason…again… because you have UC. But for the past 2 months I keep smoldering!! Today hasn’t been a good day. I have a lot of murky mucus coming out. It is intense and a fast dash to the bathroom.
If you get antibiotics for anything ever…what do they give you? Do you flare up from them?
THANX!!!!!
Medications
prednisone…6 thumbs up
Mercaptopurine….I believe gets me out of the woods.
On both right now along with Apriso…but having issues.
written by Rosanne
I have had UC for over 31 years now. About 6 years ago I had what is called a CRVO (Central Retinal Vein Occlusion) It is when there is veins in your eye that leak and cause visual problems.
