Eye problems and eye doctors

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Brian84
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Date Joined Mar 2005
Total Posts : 452
   Posted 5/8/2008 6:36 PM (GMT -7)   
For the past few years I have had eye pain. I can feel it every day. My eyes are really dry, pressure behind my eyes and they burn sometimes. They are also very sensitive to light. I am always squinting and can't really see too well when I am driving cause its so bright.
I've gone to eye doctors and I always walk out with no answer and $150+ less in my pocket. They tell me that I just need a better prescription and it will make it better. It doesn't. The solution is to get new glasses and for the sensitivety to light, just wear sunglasses all the time. Well I have to wear regular glasses now and i can't always have sunglasses with me.
I went as far as tinting the windows in my car, which is illegal in illinois and now I keep getting tickets for it. I am not taking them off cause it hurts my eyes without them.
I was wondering if anyone has experienced these problems and not getting them resolved from the eye doctor. And also if there is something else I can do about the tinted windows. The doctor did say that my eyes being sensitive of light could be because of my crohns. Doctors are able to write prescriptions, but its hard to get them to.
Im sick of my eyes hurting all day every day.

Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 5/8/2008 6:42 PM (GMT -7)   
Okay, my eyes were always fine and then after crohn's I needed glasses and they are sensitive. My eye doctor did a series of x-rays that I have to repeat every year because of crohn's. I wish I could say what they are, but can't exactly remember. Are you seeing an optometrist or regular eye doctor? I use my prescription sunglasses very religously when my regular glasses go off. I can't tolerate the sun.

Brian84
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Date Joined Mar 2005
Total Posts : 452
   Posted 5/8/2008 7:26 PM (GMT -7)   
The first doctor I started telling the problems to was an optometrist. Than the next was just a regular eye doctor and the person I went to tonight was an optometrist. It's getting too expensive to have no results.

Crohn'snme
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Date Joined Feb 2007
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   Posted 5/8/2008 7:36 PM (GMT -7)   
I think you should see a regular eye doctor. If they are dealing with Crohn's they will bill it under medical. Do you have medical? There are a series of xrays that they do to track crohn's and it's progress if you have insurance it should be covered. I see a regular medical eye doctor and have my glasses filled at a cheaper facility like costco. If you go see a doctor who refers you to a eye doctor for this situation your more likely to be covered than a regular eye exam.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 5/8/2008 7:42 PM (GMT -7)   
The regular eye doctor I went to was at Wal-Mart. For my eye pain and redness she diagnosed it as pink eye. Im pretty sure it wasn't. Wouldn't it be better to go to an optometrist or opthemologist? I do have regular insurance but not vision insurance. Im paying 100's of dollars out of pocket each time.
Crohn'snme said...
I think you should see a regular eye doctor. If they are dealing with Crohn's they will bill it under medical. Do you have medical? There are a series of xrays that they do to track crohn's and it's progress if you have insurance it should be covered. I see a regular medical eye doctor and have my glasses filled at a cheaper facility like costco. If you go see a doctor who refers you to a eye doctor for this situation your more likely to be covered than a regular eye exam.

Mishahu
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Date Joined Jan 2008
Total Posts : 11
   Posted 5/8/2008 7:47 PM (GMT -7)   
Brian you should see an ophthalmologist - that's the only one with an MD. It sounds like you could have something called uveitis (or iritis) and you should be taking care of it right away. An ophthalmologist will have something called a slit lamp which is the only way to diagnose this inflammation. When you make the appointment, make sure you mention you have Crohn's.
50 years with Crohn's and still going (no pun intended)! Diagnosed in 1958.


Crohn'snme
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Date Joined Feb 2007
Total Posts : 734
   Posted 5/8/2008 7:48 PM (GMT -7)   
Thank-You, I couldnt' come up with the term. Yes, go see an opthamologist!!!

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 5/9/2008 8:30 AM (GMT -7)   
Brian . . . I don't have coverage for eyes either. But I see an ophthalmologist too and those exams are covered by my medical insurance (after my $15 copay). The reason they are covered is because I take a rx drug which requires regular visual field exams and care by a optho, so the great benefit is . . . my eye exams are also covered!!

Look into the Crohn's reason for going to the optho and ask them if you'd be covered under your insurance. Mine reassured me before my first appointment that I would be covered. I didn't believe them because my insurance is so good at denying things. But, yup!! I'm covered . . . twice a year.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 5/9/2008 9:30 AM (GMT -7)   

Hi!  I have the EXACT same problem, only I also see little dancing spots or stripes when exposed to anything other than dim lighting.  Anyways the light/sun really bothers me a lot and my eyes are always hurting from something or another.  I went to optometrists every year for 10 years and they were like yeah yeah whatever.  I went to the opthamologist and he was like hey your pupils are messed up, here have this eye drop.  The eye drop is called pilocarpine, it reallllllly burns your eyes and it's difficult to see correctly for maybe 20 minutes afterwards, but once that stops my eyes feel lots better!.  I can even drive at night without having problems since the other cars' lights aren't making me see spots or stripes everywhere or giving me eye pain.  The other nice part is it's only like $10 for the eye drops and the drops last a couple months.

I thought I should mention I also live in Illinois and have a bajillion friends who are Illinois cops.  You can get permission to have tinted windows if you have a medical reason, like a skin or eye condition that is aggravated by the sun.  You can tint everything but the front windshield for medical reasons.  The optho or even your primary doctor should be able to write you a medical note about that, so once you get that note, whenever you get stopped for your tints they can't write you a ticket for it.  If they DO write you a ticket anyways, you can take your medical note to the circuit clerk or to the traffic prosecutor or the traffic judge and your ticket gets tossed.  You should also totally complain to the watch commander of the police department who writes you the tint ticket despite it being medical tints, the cop who wrote the ticket will get chewed out big time and they will make sure to pre-emptively chew out every other guy in the department to make sure nobody else writes someone a ticket for medical tints.

Good luck at the optho! :-)


Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 5/10/2008 8:54 PM (GMT -7)   
Thanks for all the advice. I have asked my eye doctors if they can write me a prescription and the first one said. "I don't believe in it". And the one from the other day said it was illegal. I was told to just wear sunglasses. I really don't want to have to get sunglasses to fit over my eye glasses. I hate wearing stuff on my face. And what happens if I forget or lose them? Sunglasses also don't help with glare from the side. Any other suggestions on  how to get a doctor to write me a note. I don't see what the big deal it is to them.
map lady said...

Hi!  I have the EXACT same problem, only I also see little dancing spots or stripes when exposed to anything other than dim lighting.  Anyways the light/sun really bothers me a lot and my eyes are always hurting from something or another.  I went to optometrists every year for 10 years and they were like yeah yeah whatever.  I went to the opthamologist and he was like hey your pupils are messed up, here have this eye drop.  The eye drop is called pilocarpine, it reallllllly burns your eyes and it's difficult to see correctly for maybe 20 minutes afterwards, but once that stops my eyes feel lots better!.  I can even drive at night without having problems since the other cars' lights aren't making me see spots or stripes everywhere or giving me eye pain.  The other nice part is it's only like $10 for the eye drops and the drops last a couple months.

I thought I should mention I also live in Illinois and have a bajillion friends who are Illinois cops.  You can get permission to have tinted windows if you have a medical reason, like a skin or eye condition that is aggravated by the sun.  You can tint everything but the front windshield for medical reasons.  The optho or even your primary doctor should be able to write you a medical note about that, so once you get that note, whenever you get stopped for your tints they can't write you a ticket for it.  If they DO write you a ticket anyways, you can take your medical note to the circuit clerk or to the traffic prosecutor or the traffic judge and your ticket gets tossed.  You should also totally complain to the watch commander of the police department who writes you the tint ticket despite it being medical tints, the cop who wrote the ticket will get chewed out big time and they will make sure to pre-emptively chew out every other guy in the department to make sure nobody else writes someone a ticket for medical tints.

Good luck at the optho! :-)


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 5/11/2008 6:57 AM (GMT -7)   
Keep track of your eyes. about 1 1/2 years ago I started having problems with my right eye hurting like a sinus headache, redness, hurting in bright lights, floaters and blurred vision. It is another autoimmune disease, probably associated with Crohns, detaching and tearing the retina. My eyesight dipped to 20/400 (blind as a bat) before Remicade an mountains of Prednisone.
Now, it looks like I am going to save the eye. It's now 20/70.
It appeared as a "mass" to my eye dr when he examined it after dialation. He then sent me to a opthamalogist retina specialist who after 6 months gave up and sent me the a opthamologist retina specialist with an inflamation specialty at the Baskin Palmer Eye Institute, and she is also a professor at the University of Miami-Miller School of Medicine.
Take a tip for me and have your eyes checked regularly by an opthamologist. The prognosis of going blind is REAL BUMMER!
BTW, although very rare it is called Scleritis of the Eye.
Dave D

Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again so it's still not working. Now blind in that eye. 1/08 now taking Remicade monthly with no real progress treating inflamed eye. Vision still <20/200. Inflamation starting to show up in good eye. I haven't given up yet, but it doesn't look promising.
Married with 4 grandkids.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 5/11/2008 3:09 PM (GMT -7)   
I agree with Dave and everyone else on here!
 
My eye problems started about a year ago.  For most of that year, I was told I had Episcleritis in both eyes, but it never responded to drops.  The drops helped it but they never cleared it up entirely. 
 
Finally, one of my eyes got so bad that I went back in and was diagnosed with Scleritis.  I was on oral prednisone for a little over a month, and knock on wood, it has not returned.
 
My eyes are very sensitive to the sun and bright lights now.  I see floaters, especially in the eye I had the Scleritis in.  Sometimes I still get pain behind my eyes and I honestly don't know if it is sinus pain or the Scleritis or Episcleritis coming back.
 
Keep us updated and best of luck to you!

sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 5/11/2008 3:54 PM (GMT -7)   
I definetly recommend an opthamologist but I would recommend that you have your rhuemotologist or your GI recommend someone. Not all opthamologists are experts in autoimmune or inflamitory eye problems. I have no vision coverage on my insurance but my opthamologist is just like any other specialist-a 25.00 copay. And mine (although he has signs all over the office and you have to sign an acknowledgemnet that he charges seperately for vision testing and perscriptions for glassess) gave me a script for my glasses and told his staff not to charge me for it so it actually saved me money.
Since I have inflamitory eye problems he has probably saved my sight as well.
Sj

map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 5/12/2008 8:35 AM (GMT -7)   

Brian, sounds like the eye doctors you have seen are jerks.  I had that problem too until my GI sent me to my health group's opthamologist.  Since he's part of the health group, that guy is there for actual eye "problems" and not just eye testing like every other place would be, so he actually did something to help my eyes.  He was much more willing to try medicines and drops than mess with glasses or contacts or sunglasses.  There's not really a reason why any doctor should not give you the option to try drops or medications if that's what you want to try.  The pilocarpine drops I got were pretty harmless and have been around for 30-40 years, apparently it's like the eye doctor equivalent of prescribing aspirin since it's simple and well established.

It's a good idea in general to get evaluated occasionally by the opthamologist since crohn's can mess up your eyes and since prednisone itself can mess up your eyes too.  Make sure you get checked out by a real opthamologist who is concerned about eye damage instead of by some lazy hack in private practice who wants you to buy sunglasses from him. nono


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 5/12/2008 10:13 AM (GMT -7)   

indigosunrise,

You are the first person I have come across that also has (had) scleritis of the eye. It really got me down when I was 20/400 in the bad eye and started to affect the good one and 100mg of Prednisone per day was not helping. I was really hurting both physically and emotionally. My flying (piloting) days were over. I could no longer drive our RV. I didn't dare get in the boat without someone sighted with me. I even bought a white cane.

Then I got in to see Dr. Janet L. Davis, MD  http://www.bpei.med.miami.edu/site/find/find_results_doc.asp?doc_id=8&old=1

My old ophthalmologist did not know what to do with me so I researched it and found that Remicade was the treatment of choice. I then got my G.I. to put my on it. Dr. Davis added 20mg of Prednisone and bumped me up to infusions every 4 weeks. That was seven infusions and seven months ago. Now my good eye is back to 20/14 and my bad 20/70 due to the retina damage and a cataract, probably from all that Prednisone. I plan to get that removed the first part of June.

I know now that it was never a sinus ache. It was the scleritis. about a month ago, I got another “sinus ache.” Oh crap! Here we go again. But rather than take a Vicadin that would just stop the pain, I took 60mg of Prednisone for just that one day. It did not work as quickly as a Vicadin would but it did work. Today, that’s my secret weapon.

Lifestyle changes are still in order but I threw away the cane.

Dave D


Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again so it's still not working. Now blind in that eye. 1/08 now taking Remicade monthly with no real progress treating inflamed eye. Vision still <20/200. Inflamation starting to show up in good eye. I haven't given up yet, but it doesn't look promising.
Married with 4 grandkids.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 5/12/2008 2:03 PM (GMT -7)   

Scleritis is actually quite painful!  I would wake up at night and not be able to sleep.  It hurt to focus on anything and light hurt my eye.  My doctor gave me Acular eye drops and then he put me on Prednisone to get rid of the inflammation--I am really hoping it does not come back!

I had Nodular Scleritis and I don't even think that is the worst kind you can get!

Dave, did the Scleritis leave your eye "scarred" at all?  Where I had the Episcleritis in both my eyes, I can see a bluish tint to where it was.  My Opthomologist now wonders if I really had Scleritis all along because my eyes never responded to the corticosteriod eye drops (I tried Fluromethalone, Tobradex, and Prednisolone).

Have you had any problems with the Scleritis returning? 

 

 


ozonehole
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Date Joined Dec 2006
Total Posts : 559
   Posted 5/12/2008 3:43 PM (GMT -7)   
I've had the same problem, but I think it's resolved. I do wear sun glasses, and don't see anyone else couldn't do that. I have a couple of extra pairs - keep one inside the car. I am nearsighted, so those are prescription sunglasses. There are also sun glasses which darken when they're exposed to the sun, but I don't use those, I prefer the regular kind.

I went to an opthamologist. She did a very thorough exam, and said I mainly have dry eye. I was given eye drops. So between the eye drops and the sun glasses, I'm OK.

regards,
Robert
Crohn's since 1988
3 resections

Post Edited (ozonehole) : 5/13/2008 1:25:15 PM (GMT-6)


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 5/12/2008 4:36 PM (GMT -7)   
indigosunrise,
You: "Scleritis is actually quite painful!"
Me:Agreed. about like an ice pick being driven straight into the eye.
You:" My doctor gave me Acular eye drops and then he put me on Prednisone to get rid of the inflammation--I am really hoping it does not come back!"
Me: My doctors would not consider anything topical. They went for the Big Guns (100 mg Prednisone per day) right from the getgo. Beware of the "sinis headaches." They are the sign that it may be cominig back. It is an autoimmune issue, just like Crohns. Autoimmune issues don't go away.
You: "I had Nodular Scleritis and I don't even think that is the worst kind you can get!"
Me: You are right, mine was (is) posterior scleritis, the worst kind. The inflamation (fluids) accumulate at the back of the eye, pushing the retina forward, then tearing and detaching the retina. That's when the blindness occured.
You: "Dave, did the Scleritis leave your eye "scarred" at all?"
Yes it did. After I get the cataract removed, I can only expect a 50% improvement in vision, because of that scar tissue.
You: "Where I had the Episcleritis in both my eyes, I can see a bluish tint to where it was. My Opthomologist now wonders if I really had Scleritis all along because my eyes never responded to the corticosteriod eye drops (I tried Fluromethalone, Tobradex, and Prednisolone)."
Me: As I said before, my Drs. didn't even try anything topical, saying it would not work. Prednisone alone did not work. Not even in 100mg per day doses. I had to have Remicade too. My eye Dr even wanted to ad Methotrexate to it, but my G.I. would not go along with that.
If you have more questions, don't hesitate to ask.
Dave D




Have you had any problems with the Scleritis returning?
Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Set for cataract surgery in June 08 on bad eye. Should return to a correcable visionary level. Life looks  (literally) today.
Married with 4 grandkids.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 5/12/2008 6:21 PM (GMT -7)   
Thanks for answering my questions, Dave!
 
So far, my Scleritis has stayed away, but I just got off prednisone maybe three weeks ago.  My Internist said that if it does come back, it would be better to put me on an immunosuppressive drug as opposed to prednisone again.  THAT scares me!
 
With having posterior Scleritis, did your eyes get red?  Or was the pain your clue that something was wrong?
 
I have been getting the "sinus" headaches off and on, and I have even had pain in my eyes, but it comes and goes so I don't know what to think.  I do see my Opthamologist this Friday for a follow-up from taking the Prednisone.  I am assuming they can see Scleritis, even posterior, by looking through a slit lamp?
 
To Brian,and anyone else who reads this who gets what looks like "pink eye", I just want to say, if you don't believe it is pink eye, get another opinion.  When my eye problems first started, I was told it was either pink eye from allergies or dry eye.  They originally treated it as such, then figured it was Episcleritis, then it got really, really bad in one eye and they diagnosed it as Scleritis and figured it was probably that all along.
 
Also, my health insurance has paid for all of my visits to my Opthamologist, and believe me, I have had plenty this past year!  I pay my $15.00 copay and I have Aetna.  I would check into your health insurance, Brian, to see if they cover eye visits. 
 
Take care and let us know how your eyes are! 

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 452
   Posted 5/12/2008 8:26 PM (GMT -7)   
indigosunrise said...
Thanks for answering my questions, Dave!
 
So far, my Scleritis has stayed away, but I just got off prednisone maybe three weeks ago.  My Internist said that if it does come back, it would be better to put me on an immunosuppressive drug as opposed to prednisone again.  THAT scares me!
 
With having posterior Scleritis, did your eyes get red?  Or was the pain your clue that something was wrong?
 
I have been getting the "sinus" headaches off and on, and I have even had pain in my eyes, but it comes and goes so I don't know what to think.  I do see my Opthamologist this Friday for a follow-up from taking the Prednisone.  I am assuming they can see Scleritis, even posterior, by looking through a slit lamp?
 
To Brian,and anyone else who reads this who gets what looks like "pink eye", I just want to say, if you don't believe it is pink eye, get another opinion.  When my eye problems first started, I was told it was either pink eye from allergies or dry eye.  They originally treated it as such, then figured it was Episcleritis, then it got really, really bad in one eye and they diagnosed it as Scleritis and figured it was probably that all along.
 
Also, my health insurance has paid for all of my visits to my Opthamologist, and believe me, I have had plenty this past year!  I pay my $15.00 copay and I have Aetna.  I would check into your health insurance, Brian, to see if they cover eye visits. 
 
Take care and let us know how your eyes are! 
I also have some kind of pressure behind my eyes. I don't know if it is Stress or an eye problem. I don't know who to go to cause this is affecting everything I do. It's hard to concentrate. I can feel this all the time and have mentioned stuff to my GI and he says he doesn't see anything and the eye doctors don't either.

Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 5/13/2008 5:06 AM (GMT -7)   
So far, my Scleritis has stayed away, but I just got off prednisone maybe three weeks ago.  My Internist said that if it does come back, it would be better to put me on an immunosuppressive drug as opposed to prednisone again.  THAT scares me!
I understand your fear about the suppressants. In the beginning I ojected to the massive amounts of Prednisone. The Drs said. "Okay, you wil lose the eye." I gave in. Remicade is best.
 
With having posterior Scleritis, did your eyes get red?  Or was the pain your clue that something was wrong?
Yes they did but the first problem was I found myself reading with one eye closed because it felt tired and didn't seem to focus. I knew I had a cataract and figured that was why.
 
I have been getting the "sinus" headaches off and on, and I have even had pain in my eyes, but it comes and goes so I don't know what to think.  I do see my Opthamologist this Friday for a follow-up from taking the Prednisone.  I am assuming they can see Scleritis, even posterior, by looking through a slit lamp?
Yes they can. But with my cataract, it was difficult to see. My Optometrist missed it. Said it was just a cataract. The REAL specialists take a handhend magnifying glass and have me lean back; then get up close to look, making me look up, down , right, left, etc., with the eyes really dialated. Then they back it up with many pictures. Then the inject dye in the vein in the arm to make everything look red and take more pictures. Afterward, my urine looked like Mello Yellow.
 
Brian,
See another Opthamalogist. Tell them of you concerns of another autoimmune issue in your eyes. Your insurance will cover this. Don' let it get out of control. Like they told me, "You will simply just lose the eye."
 
Dave

Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Set for cataract surgery in June 08 on bad eye. Should return to a correcable visionary level. Life looks good (literally) today.
Married with 4 grandkids.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 5/13/2008 9:48 AM (GMT -7)   
Scary!  Well, I would much rather be on the suppressants than lose my eyes!  I hope this isn't the wrong kind of attitude to have but after having the problem for a year, I am just "waiting" for it to come back. 
 
I feel like I am in a "hard place" right now as well, because Crohn's has not been "officially" diagnosed for me.  I don't know if they cannot give me certain drugs until it is official. 
 
Dave, do you have the Scleritis pretty much all the time now? 
 
Another thing my Internist said, and I have read this as well, is that the eye inflammations run independent of the IBD so they can happen even when your other symptoms seem to be minimal.  Have you noticed any correlation between the two?  For me, looking back, it seems my eyes have been the absolute worst when my stomach was not that bad.
 
Brian, I have also had pressure behind my eyes while all of this was going on.  I agree with Dave--go and see another Opthamologist. 

Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 5/14/2008 4:32 PM (GMT -7)   
 
 
Dave, do you have the Scleritis pretty much all the time now? 
I don't know but I guess so. 
 
Another thing my Internist said, and I have read this as well, is that the eye inflammations run independent of the IBD so they can happen even when your other symptoms seem to be minimal. 
Most Drs. agree that the two are related but won't swear to it.
Have you noticed any correlation between the two? 
Yes, when I took the 60 mg Prednisone for the "sinus headache" my stools formed a bit.
For me, looking back, it seems my eyes have been the absolute worst when my stomach was not that bad.
Goolgle scleritis of the eye and you will find cases where they did not have Crohns.
 
Dave D 

Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Set for cataract surgery in June 08 on bad eye. Should return to a correcable visionary level. Life looks good (literally) today.
Married with 4 grandkids.

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