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Eye problems with UC? How much blood, mucous lost is too much?

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Posted 12/7/2008 8:14 PM (GMT 0)
On Dec 5.08, at a retirement party after dinner, the music was great, decided to dance for a while.  Upon going to the washroom, I noticed the outside corner of my left eye was red, like I had a broken a blood vessel. I thought I maybe over exerted myself because I decided to finally have fun! (Only went to the bathroom twice beginning that evening.) After seeing my eye, decided I'd better go home, went to hospital last night to check on that but mostly because of a little bit black stool in my regular bloody, mucuos stool, probably from the one vitamin pill I took that day.  2 days later no vitam taken, no more black stool color but eye seems to be settling down a bit.  not a bright red color anymore but a little red and with little bit of yellow color.  tried to put on my hard contact lense in that eye but it felt a bit of burning and the red showed up more on the edge of the contact lense. mild little red vessels with one little spot closer to my iris. 

Not sure what to think?  Episcleritis?  I've never had this before when I've had my last two flare ups.  One in 2000 and the other in 2004.

This is my third flare up since that time.  Lost 20 lbs now. How long can a flare up last and how much blood, mucous is too much?  What has been your experiences in length of time before steroids used? My UC started Oct 29.08 only on Asacol 400 mg, first 2 wks, 1-4 x/day then the next two weeks 2-4 x/day and continuing. I really don't want to go on prednisone again.  I'm trying to not freak out!

I'm going trial and error with food and trying to keep a dairy of what I eat, will see my family doctor on Dec 11.08.  No specialists in this little town. I requested liver and kidney blood work on Nov 19.08 because of Asacol, going to check on that at same time.  I'm going to make an appt with my optometist as well and get eye checked out too.  Also have an acupuncture appt on Dec 10.08.  At this point I'm going to try alternative methods than steroids.  confused shakehead

Posted 12/7/2008 9:54 PM (GMT 0)
Just a quick reply on the eye front - you may well be right about episcleritis, but go see an opthalmologist as soon as you can. Let them know you have UC, and details of your medications. Make sure they test you for glaucoma as well, since this can be a complication of iritis (a bit more serious than episcleritis, but also a possibility given your UC and the pain you've had). Don't forget to let your GI doc know about the symptoms.

Have you had any visual disturbances as well?

Good luck with finding a successful alternative to steroids! Watch out for the eye meds - steroids either orally or by eye drops are a common prescription for both episcleritis (if it's fairly severe) and iritis.
Posted 12/8/2008 1:47 AM (GMT 0)
Hi Kat,

     I agree with Limey.  You should get an appointment with an opthamologist.  When I was experiencing a flare about five years ago, my GI doctor sent me to an opthamologist because he told me that UC can affect the eyes.  Since that time, I have gone to one every year.  My medical insurance covers the visits because of the UC diagnosis.  It is better to be safe than sorry.

     I do have visual disturbances when I am on prednisone.  Not bad ones, some blurring of vision but nothing I can't live with.

     about your flare.....I started a flare the end of March.  I seem to suffer one every year now since 2005.  The only meds I took for UC at the time were the 6MP and Colazal.  I progressively got worse and had to be hospitalized for ten days in May.  The only med that really helps me obtain remission is the dreaded prednisone.  Hate to take it, but it does the trick.  However, the doctor started me at only 30 mgm with the usual taper and when I was weaned off of it the flare resumed after about two weeks.  It was only when he jump started the prednisone at 40 mgm back in September with a slow taper that I was able to obtain remission and (keeping fingers crossed) retain it since Nov 1st.

     As far as diet is concerned....try eating a low residue diet.  It works for me.  Good luck dear.

Posted 12/8/2008 4:02 AM (GMT 0)
Limey: yes, i will get this checked, hope can get fit in this week. considering prednisone again if it has to come to this. visual disturbances, could be, as i was not expecting this to happen to me, yes, mild blurring, thought i was just tired. but now that i think about it. probably was a pre-cursor to this happening. Thanks for your advice. will do.
Posted 12/8/2008 4:22 AM (GMT 0)
Hello Christine1946, thank you for advice as well, much appreciate this guys! This illness makes you feel like only person in world at times. As I never expected this to happen at all, I will most definitely see opt. every year. I don't have a GI, had one in last city I lived at but moved to small town for work last year.
It's good to hear, (knock on wood also), that you're in remission now! Crossing my fingers for you on staying that way! Yes, i'm thinking prednisone again if it will help to lessen eye problems, even if it can be for a little while. Again, thanks for your letting me know about your recent flare, it will give me a timeframe. Hospital visit last night took a CBC hemoglobin was 148, apparently OK not to get excited about, was told. Hanging in there, so far! If you can explain one of these days, what is a low residue diet? Internet has so many recommendations, diets, probotics, vitamins, etc., truthfully I am lost right now but trying to understand.
Posted 12/8/2008 5:19 AM (GMT 0)

Hi Kat Kat - My first symptoms that I had an autoimmune problem were with my left eye when I was 24.  I was diagnosed with uveitis.  I first noticed redness like a broken vessel...then after a day or two some pain and light sensitivity...uveitis is linked to UC as well as many other immune system problems...I also could not wear my contact when my eye was flaring up.   I had about 4 flares between the ages of 24-27 and am now 33.  I have not had any problems with my eye again but was diagnosed with UC at 31.  So, with that said I would go to an eye doctor ASAP and tell him you have UC. It might not be anything big but if it is uveitis you need to get it treated because if it goes untreated you can have some serious damage to your eye.  It is usually treated with a steroid eye drop.  The eye drop is not like pred., I never had any side effects and the drops helped within a day or two.

Posted 12/8/2008 2:38 PM (GMT 0)
I to have had uveitis just after dx with u/c in may and had steroid eye drops with no side effects in fact had the drops for about 4 weeks and could not wear my contact lenses either have had minor flares since but no more uveitis i would get it seen asap as left untreated can cause big problems as thatfield has said hope it gets better soon.
Posted 12/8/2008 8:38 PM (GMT 0)
Kat,

     Low residue diets are low in fiber.  I followed one when flaring.  Breakfast consisted of rice cereal with 1% milk (I am not lactose intolerant) and half a banana.  I didn't drink anything with caffeine.  Lunch - yogurt and dinner usually baked fish with a baked sweet potato and cooked carrots.

     If you type in low residue diet and do a web search, you should come up with many suggestions.

Posted 12/8/2008 11:27 PM (GMT 0)
yeah, don't mess around with the eyes! I had mild uveitis too, related to the UC. I also had steroid eye drops- they work awesome! And literally no side effects, none. Definitely get to an optometrist ASAP. Untreated uveitis/iritis can lead to blindess, for gosh sakes!

Posted 12/9/2008 1:47 PM (GMT 0)
Wow, I am glad that I looked in on this thread. I have been having a lot of eye problems just as described here - like broken blood vessels - very red - scratchy. It preceded my last flare. I guess I better have it seen about.
Posted 12/11/2008 9:20 PM (GMT 0)
Hi Katkat
Let us all know how you get on with your eyes (you, too, WeirdBeard).
Posted 12/12/2008 1:16 AM (GMT 0)
Yes, I definitely will. Can't see Opt until Dec 19.08. Had Dr visit Dec 10.08 but I think Doc wasn't sure what to say or think until I said I do have an Opt appt Dec 19.08. "Oh good, good, they'll have a better look at it and recommend more tests and/or specialist if they need to." Hmmm... small town doctors.

I wear just one contact lens on my "OK" eye, but it seems to be not as bad or burning as my left eye, for work because yes, I'll admit it, I am "vain" on that part or until they can invent "pop bottle bottom" glasses to be much thinner than the newest thinner lens that I have on my glasses! Yes, it's hard to see, but it's only a few hours in the morning, lunch time go home take off lens, glasses on, then one lens back on, back to work for another 3 hours.

But I am so glad I have a site to refer to with others with the same condition and most of all, that we all give each other encouragement and experiences. That is so good to see and read this! Let's hope there is a CURE! Later...
Posted 12/17/2008 4:16 AM (GMT 0)
Got a fit in today with Optometrist, people cancelling before holidays. 

Yes, opt. does agree that it may be the start of scleritis.  sad And not episcleritis.  I named off a few possible complications to opt and opt said wait, wait, don't get too far ahead right now.

Episcleritis is a bit different, less severe than scleritis and is quite normal for people to get this, causes could be part of stress, wind or others. Yes, opt. does agree that because of my UC that want to stay on top of this and I see opt. again in about 3 weeks January 9.09 and to get a complete eye exam then also. 

I did notice that my left eye, the one that was affected on Dec 5.08 has just a little bit blurring than the last time I had my eyes checked last year.  The right seems to be the same, no major change in that.  When I watch TV and try to read the guide on the screen, it's like I have to push up my (pop bottle bottom) glasses a little closer to my eyes. Yes, I have very bad eyesight and vain in that dept. (especially when it comes to work, my co-workers never saw me in glasses ever!)  My left eye could only read about the 2nd line on the eye chart and the right the 4th to 5th line.

Had my eyes dilated also to check the retina. Good so far.  First course opt wants to stay with for now is lubricating the eyes or artificial tears called Systane.  I have to put 1 to 2 drops in my eyes about 4 times a day.  I was so glad to hear I'm not the only patient my opt has with this problem and with UC, there are about 8 others.  Then there are other courses also one of which may last resort be oral steroids if not calmed down, but that wouldn't be until after other options checked into.  I will ask more on this on Jan9.09, this time I'll make a list of questions.  Opt said that sometimes in people with UC, something that one ate and didn't agree with them could cause the redness in the eye to flare or if stressed too.

Since Dec 5.08 my left eye has simmered down quite a bit and the red spot closer to my eye almost disappeared now.  I asked if I can put my lens back on, I could try but it might turn red again. So we might look at soft lenses again if I'm going to wear them only at work and not for any length of time.  (I had to change from soft lenses to hard lenses because of the lack of oxygen going to my eyes which was causing more blood vessels to form.)

So that's about it for now, I'm going to try to take it easy. Has anyone heard of anti-depressants helping calm down UC? Just thinking about that....

Thanks for taking time to read my endless blabbering!

 

Posted 12/17/2008 8:21 PM (GMT 0)
Glad that you're being looked after, and that you've already got the follow-up booked.

Quite a few of the people on here are on anti-anxiety meds, and I've seen a fair few posts where people have said that the meds have helped with some of their symptoms. If you don't mind the suggestion, hypnotherapy can be helpful in reigning in anxiety levels: don't know if anyone can recommend any anti-anxiety mp3 downloads, maybe?

Hope the eye meds kick in soon, and you can look yourself in the eye again. (Sorry, nearest I can get to a joke today).

PS Got my own eye exam tomorrow at 17.00 UK time. Apparently, I have to take a urine sample with me (eh?). Wish me luck!
Posted 12/17/2008 10:51 PM (GMT 0)
limeycricketlover: thank you for the encouragement, that really helps! Hmm... anti-anxiety downloads, yeah, it could work too. I actually start acupuncture too, I had my second visit on Dec 15.08 and it was interesting, don't know if it's all psychosomatic or what but it did help some and I got some sleep as well too. I was supposed to go again tomorrow but my shins don't seem to be up to getting punctured at the moment! So I thought I'd give them a rest.

Had a GREAT laugh, "look myself in the eye!" that's a good one. Gotta love humour. Here's hoping your eye exam goes well too. UK time, eh? Wow, that's quite a ways. But the urine sample, you JUST have to let me know what's up with THAT! Good luck!
Posted 12/19/2008 9:07 PM (GMT 0)
All went well with the eye test - no major problems, just gotta take some eye drops about 4x a day. Asked doc about urine sample to see what that was about, and he just said that it was normal for first time they see someone.
I reckon it was just a test to see if I could pee straight...
Great to hear that the pin-cushion treatment has had some good effects - even some extra sleep must be of benefit. Do you actually watch the pins go in? Not sure I could bear to...
Posted 12/20/2008 4:50 PM (GMT 0)

Hey,

Don't know if this has anything to do with UC..but for the second time in a couple of months, my right eye has been watering on and off.  I believe that I have a block-tear duk?  I had it a couple of months ago for about a month, then it stopped.  It started up again about a month ago.

Eye is not red, sometimes ichy though.  Just a pain, because it always looks like I was crying *L*

However, the last few weeks I have not beem feeling well.  Stool is formed, but have stomach pains, some cramps and the urge to go to the washroom.

Posted 12/20/2008 5:26 PM (GMT 0)
It probably does have something to do with UC as the UC inflammation can manifest the eyes as well, either as "pink eye". It sounds like it could be the pink eye for you. You should go get it checked for sure. It could be as simple as eyedrops. As my Opt said, your eyes could be affected, even if something you ate and/or stress did not agree with you. This is part of the illness of UC. You can check the internet about UC, it describes eye problems as well. Hope it checks out well for you!
Posted 12/24/2008 12:18 AM (GMT 0)
katkat,

I am so sorry to hear you have Scleritis! I have Scleritis myself and it is so painful!

My first sign of having something wrong was I had Episcleritis that would not go away. After time, it developed into Scleritis in my left eye. I was diagnosed with Crohn's Disease shortly after.

I wish you the very best and please feel free to contact me if you have any questions.
Posted 12/24/2008 4:33 AM (GMT 0)
Thank you for writing, indigosunrise. 

Didn't want to let anyone else really know the extent of the possibilities of problems from this but you guys.  Family and others don't really seem to understand completely about this whole disease and don't want to scare them and myself too.

Right now I am doing lubricating eye drops 4 x/day or when they feel tired or sore.  It's not too bad right now.  I work at a computer all day, so that's probably not really helping. 

Please tell me how you started out on this whole scene.  Is is possible for UC to turn into Crohn's?  If so, I didn't know that. 

And yes, I'll probably be writing to you more often on this.  For me, I would always want to know the possible worst that could happen but truly and sincerely hope for the best!

 

Posted 12/24/2008 3:38 PM (GMT 0)

Hi katkat,

What happened with me, and this is a long story :-) , but in April of 2007 I had viral spinal meningitis.  In May or June, I started having eye problems.  I was diagnosed with Episcleritis in both eyes, as when one eye would clear up, the other would flare and then for a long time, I had inflammation in both eyes.  Anyhow, the steroid eye drops helped with that for a while. 

In November of 2007, after having all my blood work come back as normal, I went to see my Internist to try to figure out what could be causing the inflammation.  Immediately, she thought it was Crohn's Disease.  From there, I had all the tests that go with that (upper endoscopy, colonoscopy, SBFT, pill cam) and was diagnosed with Crohn's this past summer.

Anyhow, in February of this year, my left eye got really bad and my opthalmologist said it was Scleritis.  I don't know if you have looked into Scleritis much yet, but there are different kinds.  I have Nodular Scleritis. 

I have been on oral prednisone since February of 2008 for the Scleritis.  Unfortunately, everytime I would get off pred, the eye would flare back up.  I was on Methotrexate for about 4 months, but didn't respond.  I have been on Imuran for about 3 months, but they found out from my blood work that I am slow responder.  Anyhow, I got started on Remicade last month for my Crohn's and my eye doctor said that it should also help the Scleritis. 

I don't believe I have ever had UC, I think it has just been Crohn's.  Back to the meningitis bit, there is a theory that something needs to "trigger" Crohn's and I believe having the meningitis started mine.  However, that is just my personal opinion--I might ask my GI about it the next time I go in.  It is interesting because none of this started until after I had the meningitis.

It is so true that others just don't understand IBD or Scleritis. 

There is another person on the Crohn's forum who also has Scleritis and I have found him to be a great source of information.  His name on here is DaveD and I have had discussions with him regarding Scleritis.  I will see if I can find those boards and post them here for you to read.

One very GOOD thing is the type of Scleritis I have does not cause blindness, as I have asked my eye doctor that about 5 times--I tend to worry!  :-)

Please feel free to either email me (my email address is posted on my profile) or write me on here if you have any questions. 

Take care and keep in touch!

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