my Ophthalmologist has tunnel vision

[notdeadyet]

One of those long term Crohn's disease patient, 20 to 68 currently, who now suffers more from extra intestinal manifestations than bowel issues, since the colon was removed in 1992.

In the last 5 years I have had multiple serious inflammation, infection, and untreatable issues with eyes, skin and mouth. These last for about 3 months and then go, some treated by antibiotics, steroids, or medication to ease the discomfort. None of these episodes showed bacteria, virus, fungus or any other organism that would cause the dysfunctions.

In the last 10 months, my right eye has been deteriorating very badly, to the point the cornea is affected and finally burst 2 weeks ago, when I had a cornea transplant. There is no documentation that Crohn's is at fault for the cornea, but none of the diagnostic tests including 4 biopsies revealed any agent that could be the cause. If it is Crohn's related, I wish this to be documented. My young opthalmologist resists discussing it, and does not want to pursue this direction further.

My attitude and experience with Crohn's is that it must be considered, as treatment can be fraught with errors, and the worst will probably happen, where I will lose the right eye. If anyone on this forum has any experience or advice for me, I would be greatly appreciative. Thank you.

 

[cmack]

Welcome. I dont know a lot about what you are going through. I'm sorry to hear of all your struggles. I haven't much advice except to keep a positive attitude. Be sure to come her often to talk, I have had iritis before and I was quite scared. Some patients with crohn's develop inflammation in the eyes, called iritis. This can cause redness or eye pain and may fluctuate, ( sometimes along with the severity of the digestive symptoms).

Best Wishes,

-C

 

[curlywurly]

Hi and welcome to the forum I do agree with you that doctors don't seem to acknowledge that us Crohnies can get other infections that are inflammatory related.
I have a face rash that flares now and again the GP does not think it is related just gives me cream to use.
I don't think doctors know enough about this disease and its manifestations.
I hope you get sorted but keep on reporting these episodes to your doctor he may start to take you seriously

 

[JBMouse]

Hi,
Sorry to hear of your on-going problems, I, too, am a very long term Crohn's patient, diagnosed at age 9 yrs, now nearly 70 yrs. young!
My Gastro and other doctors recognise that Crohn's is an immune system problem/failure, and becuse of that, we are prone to other inflammations, but which can usually be treated in the normal way for that particular inflammation, but will be more problematical.

Your eye problem sounds bad, perhaps you should push for a second opinion

 

[cmack]

I agree, a second opinion would be my choice. Somebody has to listen to the patient.