Had an emergency over the weekend

[radlyn1]

Hello All, it's me again, with a different problem now. Short history - developed severe case of uveitis about a month ago and under treatment, with great improvement. Diagnosed with AS two weeks ago, but have only minor back pain. S-I joint x-rays showed inflammation however.

On this past Friday night after a lovely afternoon at the beach with my young daughters, I experienced severe cramping around 6 pm. It felt so bad that I took a nap and got up at 10:30 pm, feeling slightly better (good enough to wash all the dishes from dinner that I missed); stayed up until 1 am, took an ambien and went to bed. Got up at 2 am with severe pain and vomiting. Called an ambulance it was so bad and went to the ER. Got admitted and CT scan showed my small intestine was completely blocked. They inserted an N-G tube to suck all the fluids out of my stomach (that was about the worst experience I've ever had, and I've had lots in the last month). The surgeon, thank God he was conservative, said I would have the surgery on Sunday morning b/c it seemed like I had stabilized after the N-G tube was inserted. By Saturday night at 10:30, all the pain drugs had worn off, and I felt like myself again, other than looking like Gonzo from the Muppets with this tube coming out of my nose. Sunday morning, the surgeon was impressed with my recovery. He again postponed the surgery for Monday morning. He bumped my steroids back up to 60 mg (as my eye doctor had me tapering off, and I went from 60 to 30 in about a week or so) b/c the surgeon thought it was too much of a coincidence that this happened while I was tapering. He gave an unoffical diagnosis of Crohn's, all relating to the Spondyloarthritic diseases. Tuesday morning, I was released, the block worked itself out. Went straight to my eye doc, and he said the eye looked fine (20/40 from 20/80 last week).

I think that the main person in this equation who is going to help me is the rheumatologist, right? I'm seeing another one tomorrow. I also have to see a G-I doctor. My understanding is that I have to get the right meds to control the underlying disease w/c will in turn help the uveitis. I can't keep on these steroids. They are driving me nuts. It looks like NSAIDS might not be a possibility b/c of this stomach thing now. I did have sushi on Thursday night and have been eating more carrots, nuts, dried frut, celery, and raw veg in general over the past two weeks, more so than ever before, b/c I have felt like crunching my food ever since the steroids. Thanks again for any input.

p.s. Weekend ER care sucks big time -- if you want to have an emergency, try to wait until the work week.

[Mike Bartolatz]

the uveitis related to Crohn's disease as well as the Crohn's responds very well to Remicade or Humira.
this is serious stuff if it is Crohn's disease with associated ankylosing spondylitis. I once again encourage you to see DR Nguyen in Baltimore.

Wish you the best,
Mike

[radlyn1]

Mike, Dr. Nguyen emailed me back and I am setting up an appointment with him. He was very kind to email me so quickly, it's most likely because I dropped your name -- thanks again.

Short update - went to see another rheumatologist - he thinks the Crohn's is a red herring and not sure about the AS diagnosis and thinks the S-I joints are showing osteitis candenans ilii. He was only looking at the radiologist's report and did not have the x-ray in front of him. This could be good news. Cautiously optimistic. Also had a chat with my daughter's pediatric opthalmologist today about my condition (she had an appointment and I brought the uveitis up in family history), and he encouraged me to also get tested for B5 and A29. My parents are both Filipino (I was born in the U.S.). Also for lyme and TB (w/c I can't right now b/c of the steroids.

Anyhow, take care, I'll keep you posted about my appointment with Dr. Nguyen.

[Mike Bartolatz]

HLA A29 is for birdshot retinal choroidopathy, BSRC. it causes small dots to appear in a shotgun like pattern.
HLA B51 is for Bechets disease (pronounced Bay chets) . both cause allot of problems with the posterior retina/macula. both can cause a pan uveitis. sometimes both start out as pars planitis, inflammation of the area just behind the iris with exudate. if you test positive for HLA B51, there is a support group that I can find for you started by a lady treated by Dr Foster in Cambridge, MA. I don't think this is what you have but there is hope with proper treatment. DR Nguyen should be familiar with this because of his training with Dr Foster.

chemotherapeutic meds are most often required to control both. DR Nguyen will be able to tell you by looking into your eyes if this might be the cause. with your HLA B27 positive statuts, both Ankylosing Spondylitis and Crohn's are possibilities.
Vogt Koyanagi Harada's disease, VKH also occurs in individuals with Philipino/asian ancestry. Sarcoidosis can also occur more often in those of Asian Decent.

there is an Ocular Immunologist in the PI who has a support group online if you are interested.
I worked with him several years ago developing the Pars Planitis.org site.
FYI there is a very large Philipino population in my home town, Tacoma, WA. my best friend in College was Philipino. he lives in California now but we get together a couple of times a year.

please don't let conjecture get you too excited. Trust Dr Nguyen in his diagnostic and treatment approach. get copies of the reports from your recent tests, Xrays etc. MRI would be appropriate to check both the SI Joints, intestine. if Behcets is possible, MRI of the brain would be appropriate to look for vascular changes.


wishing you the very best,
Mike

[radlyn1]

Thanks Mike. I'm seeing Dr. Nguyen on March 24th. Boy, dropping your name does wonders. I'll keep you posted.

[Mike Bartolatz]

Dr Nguyen knows I wouldn't send someone to him if it wasn't serious stuff. please be patient. this stuff takes time as you are actually pretty early on in your uveitis stuff as well as the AS and Crohn's. there is medical evidence that indicates the sooner aggressive therapy is begun, the better the overall outcome over time.
you might print out the article I posted on 3 genes 4 major disorders which link the IL23RN, ARTS1 and IL1RN genes to ankylosing spondylitis, Crohn's and autoimmune thryoid disease. the articles talke about specific offshoots from these genes in various populations. Asians present with different halplotypes than caucasians for example. testing for the right ones could indicate how hard to hit the underlying conditions with specific biologicals and DMARD drugs to prevent disease related complications.
I don't know if Dr Nguyen has seen the articles.

wish you the best,
Mike

[radlyn1]

Thanks again Mike. I like the Filipino connection - we make good best friends. There was a big gathering at my bro's house last night and all of my aunties and uncles and cousins were there. My mom and dad came back from the Philippines last night to make sure I was alright and to "take care" of me Unfortunately, I had to stay away from all the great food on the table. I'm a little scared to eat right now.

I'll keep you posted about the 24th. It's an hour flight from here and the tik was only a hundred bucks! How 'bout that?

[Mike Bartolatz]

that is a very reasonable fare to pay from southern Virginia to Baltimore.

you have to eat! crohn's is a very debilitating disease. it forces many people to retire early. you might want to make sure you pack some depends in your carry on even though it is a short flight.

have a great weekend,
Mike

[radlyn1]

First, let me just say that the level of care at a teaching hospital with a specialist's specialist is vastly different from where I was being treated. My local doctor was excellent but it was kind of like an eye factory. Thanks for the recommendation Mike. Although I went to the hospital to get copies of my labs, the HLAB27 positive lab was not in there and Dr. Nguyen would not accept the fact that some doctor just "told" me I was. "Where's the report"? You have to see it and cannot just take someone's word for it. I don't really know where it is! I will find out tho.

They took a bunch of pics of the eye and the eye exam itself was unlike any other that I've received. I didn't even know the eye could get pushed and prodded like that - it was all for the best. Dr. N was very patient and answered all the questions; he even dictated everything we discussed and I will get a report!!! Wow!! I mean, we get to see a report of what transpired - that is a first b/c my fist foray in the world of doctors unfortunately has the patient in the dark about what the heck is going on.

Vision is 20/20, slight inflammation still and he wants to just completely kill it. Upped the steroid back to 40 (I was at 20 and actually starting to feel like a normal person for one glorious week), but oh well. I'm tapering over 2 months along with the indomethacin (NSAID), which is the treatment I was looking for as opposed to jumping me right to methotraxate w/c I belive my local doc was on the path to doing (not sure about tho). I was tapering pretty quickly previously and Dr. Nguyen seemed slightly disgusted (by his facial expressions) about this. He did say he had no prob with my local doc tho but I am going to back to Dr. N in two months and resume treatment with him. Although I don't have any IBD symptoms and never have (other than the small intestinal block a couple of weeks ago - I actually didn't realize how serious this was until I got out of the hospital), Dr. N wants me to get all the tests (endoscopy, colonoscopy, biopsy, etc.) so we can be on the right track of treatment.

Thank you, thank you, thank you for the recommendation. Folks, it's true, go see your closest specialist (even though it's far, even though you have to pay out of pocket like I did if you can), because it makes a world of difference. Knowledge is power. Listen to Mike when he tells you where to go. RADLYN LOVES IRITIS.ORG.

[Mike Bartolatz]

Radlyn,
I'm glad you had a good experience with Dr Nguyen. he is a superb ocular immunologist and retinal specialist as you found out. it is important that the patient is kept in the 'loop' so that they can make informed decisions about their care.
are you taking the indomethacin SR, the sustained release form of this drug?
did he mention any inflammation along the pars plana, snowball or snowbanking of exudate? vitritis (cells and protein in the vitreous)? any posterior inflammation showing up on the 'pictures'?
I think your decision to keep Dr Nguyen as your speciailst is the right one even if you don't have crohn's etc (I pray you don't).

I appreciate your thanks but also feel that you have educated yourself and that is what this site is all about. your continued support by telling your story aids me in proving to people that what I am telling them is true.

Wishing you the very best,
Mike

[radlyn1]

He mentioned posterior inflammation, yes. He said tha local doc works more with anterior and this is posterior. I don't know about the extended release meds. I should check that. I did the pics after the meeting w/ Dr. N and suppose they will get reviewed prior to my 5/26/09 follow-up. Didn't mention anything else you mentioned. I talked to him about going to the Philippines in July and he said I can only go if the inflammation is completely gone. That was different advice from local doc, probably more conservative (good), and that trip might kill me the more I think about it (two kids on an 20-hour flight - why?!). It's a business/pleasure, more pleasure, but I'll sacrifice fun for health any day. I don't drink anymore for example and don't even care. I was a glass-of-wine a night person, and I joke w/ everyone that I had to go blind to break that habit

This site is so awesome, it gives iritis folks a place to post, vent, be heard and understood. Priceless!

[Mike Bartolatz]

with his diagnosis of posterior uveitis, it is much more serious than just anterior uveitis and once the pictures come back and he gets a better idea of what is going on, he may add different classes of drugs to the regimen.
our assumption has been that you are HLA B27 positive but if you don't have this marker you might ask to be checked for the specific genes outlined in the post '3 genes 4 major disorders' which include forms of the IL23R, ARTS1 and IL1R genes mentioned by specific subsets in the various articles in the series of posts.

should you decide to go to the PI, DR Manolette Rouqe trained under DR Foster and has a very large practice in Manilla and surrounding communities. off hand I can't think of his email address, but he has a website that you can interact with him.
he helped me set up the Pars Planitis forums for Dr Foster some years ago.
mention my name in an email to him so that if you need to get in to see him, you can obtain an expedited appointment.
also mention the Pars Planitis.org and iritis.org sites and it will spark his memory (I hope) of me and allow you rapid access should you require it. I'll get proper spelling and contact information for you.
I assure you DR Foster wouldn't condemn a glass of wine a night. he and his wife enjoy a good wine with dinner together and with friends.
being an alcoholic of many years of sobriety I can understand your concern however. today I can easily not partake reserving a glass of wine, bottle of beer etc for only very special occasions. for the most part, life is good.
this site is basically a good place to come and share. vent etc.
some abuse this site wanting to turn it into an alternative medicine site which I cannot endorse or allow. this stuff can blind people without MODERN Western Medicine as the treatment. some might find me to be 'narrow minded' because of this. I can rest assured at night that I have done all that I can to help people prevent blindness and permanent vision loss because of my 'narrow mindness'. they can go elsewhere to discuss their quackery. I have limited time and energy with no extra to get into trying to disprove the impossible to them if you know what I mean.

wish you the very best,
Mike

Manolette R. Roque, MD, MBA, FPAO
Asian Hospital and Medical Center
5/F Medical Office Building Suite 509
2205 Civic Drive, Filinvest, Alabang, Muntinlupa City, Philippines 1781
Tel:: +63 (2) 771-9253
Tel and Fax: +63 (2) 771-9254
Cellular line: +63 (917) 817-2020

Website: http://www.EyeRepublic.com.ph
Bio Sketch: http://ocp.com.ph/manolette-rangel-roque-md-mba.htm
Email: manolette.roque@eyerepublic.com.ph

[radlyn1]

Thanks for this info Mike. My parents were over for dinner last night and my dad brought a friend whose nephew is the Director of this eye hospital in Manila that you mention. What a small world. My NSAID btw is what you say it is, ER. I hope not to have to see Dr. Roque while in the Philippines, but I know that mentioning you and this site will open the door for me as it already has.

[Mike Bartolatz]

yes it is a small World in Some ways. I know that Manolette will take care of you. He is a really nice guy. my interaction with him was only over the internet but he always responded right away.

mike

[radlyn1]

Mike, is there a difference b/t SR and ER. I tried to do a search and couldn't figure it out. This drug kicked my butt today. I felt really weird, lethargic all day today and this morning, and a troubling dream during my 6 am - 7 am nap (yes, gotta figure a nap in with those steroids keeping me up all night long!). It seems like a lot -- 75 mg 2 x per day. But Dr. N knows I weigh only a 105 lbs so....