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Ulcerative Colitis
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Posted 2/10/2018 3:38 PM (GMT 0)
Someday my annual GI appointment will not involve a 3 hr. round trip (yes I chose an out-of-town GI) and being told he's running 1.5 hrs behind schedule when I arrive on time. But sigh it's only once a year so he will continue writing my RX scripts and be there if I have a setback (none in 7 years now).

But here's my beef: the nurse takes my BP (great numbers yay) and proceeds to ask me a twenty questions like "do you get headaches", "do you have pain in your eyes", "do you have breathing problems" "do you have joint pains". I answered no to everything except reminding her this is the time of year everyone has red eyes and respiratory issues in Florida and she said yes, she has that too. Yes I sometimes have sinus pain, again seems seasonal.

So now 2 days later I start wondering "DO I HAVE headaches, breathing problems, red eyes???" Maybe there IS SOMETHING WRONG". My doc admitted that my last blood test showed good numbers. I know he is being duly diligent but what if I said "yes" to any of those questions, would Remicade or Humira be suggested? Glad I only go once a year, can't take the pressure.
Posted 2/10/2018 6:06 PM (GMT 0)
i admire your perseverance in such a challenging endeavor - glad things are well - at least we hope they are shocked

LOL !
Posted 2/10/2018 7:46 PM (GMT 0)
I admire the two of you as you are able to control your disease with diet. I hate being on Humira and I am not even 100% sure it is working as I am still on a tiny dose of prednisone. I am trying the SCD diet sort of / cut out all grains but yesterday made a loaf of bread with almond flour and not so sure my colon liked it. I started acupuncture a few weeks ago and cut out all grains at the same time and have improved for sure the last 2 weeks. I dropped the prednisone to 4mg today so we shall see. I really feel unhealthy on all of these meds but am so afraid to not be on them at the same time.

TT- how did you end up on your diet and what helped the most etc.? What is your diet exactly?
Posted 2/10/2018 9:03 PM (GMT 0)
but what if I said "yes" to any of those questions, would Remicade or Humira be suggested?

Maybe, but hopefully not. You could look him up on
/projects.propublica.org/docdollars/
to see if he receives money from drug manufacturers, or check to see if his medical practice includes in-office infusions.
Posted 2/10/2018 9:34 PM (GMT 0)
I don't think there is any way to know what they might say based on routine questions. My doctor asked about my eyes and other things because he said our disease can present in other areas of our body. It just sounds like they are being thorough to me. Sorry your trip created anxiety, but it sounds like you are doing well and that your doctor does not see any red flags.
Posted 2/10/2018 9:59 PM (GMT 0)
IMCurious
Thanks for the link, I've used it in the past and none of my docs are on the take.

Spring
I know he is being proactive asking these things but so much of extra-intestinal UC symptoms are common to non-UC as well, makes me start to worry when no worries before.

countess18
I used almond flour too when going through the wheat alternatives. Turned out my gut could not handle the fiber from that so quit it and got better results from white rice flour.

TroublesT
Yes all is well, hope you are too.
Posted 2/11/2018 1:21 AM (GMT 0)
Eyes being red from seasonal allergies have nothing to do with UC. Eyes being red, painful and sensitive to light from uveitis, an autoimmune eye condition, is probably related to UC. If you are worried about your eyes, it's a 5-minute test with an opthalmologist to get checked out for uveitis.

Source: I have had uveitis for the last two years.
Posted 2/11/2018 1:42 PM (GMT 0)
NCOT
Thanks for your input about uveitis. After my doc appt I googled photos of that to make sure that wasn't a problem. Scary images. What treatment are you doing? Drops of something in eyes? Sorry you have to deal with this UC-related add-on problem.

I have no pain or sensitivity to light just usual sneezing, post-nasal drip and red eyes of spring in Florida.
Posted 2/11/2018 2:46 PM (GMT 0)
No problem, ima.

I'm taking steroid eye drops. To begin with, they were really effective and cleared up the uveitis within a day. However, in the last year the uveitis has either become much more stubborn or the steroid eye drops have become less effective: I'm not sure which. But the result is I have to take the eye drops all the time now, because if I don't the uveitis starts coming back within days.

It's not an ideal situation because steroid eye drops can harm the eyes in the long run. But the opthalmologist said that it was better to be on eye drops permanently than to live with untreated uveitis, because the latter can cause scarring and eventual blindness.

If you have no pain or light sensitivity then you should be okay! An acute attack results in excruciating stabbing pain. In a less acute attack there is still pain, but it's somewhat duller and not as bad.

I've probably got the HLA-B27 gene, which is related to uveitis and IBD, amongst other things.

www.iritis.co.uk/b27.htm
Posted 2/11/2018 7:29 PM (GMT 0)
I don't want to hijack this thread but

NiceCupOfTea said...
But the result is I have to take the eye drops all the time now, because if I don't the uveitis starts coming back within days.

It's not an ideal situation because steroid eye drops can harm the eyes in the long run. But the opthalmologist said that it was better to be on eye drops permanently than to live with untreated uveitis, because the latter can cause scarring and eventual blindness.


I don't know if this will help you but I was in a similar position last year. I was forced to take prednisone eye drops for macular edema from multiple eye surgeries. My doctor insisted that the alternative could be eventual blindness but I was wary because steroid eye drops could eventually lead to glaucoma. The doctor didn't seem too concerned and told me that there are ways to manage glaucoma.

To make a long story short I researched Dr. Google and found an alternative treatment for my macular edema which actually worked for me. (If interested I described the details in another thread and would share with you except I suffered from edema and your problem is uveitis, so it may not help you).

My point is that when taking the steroid drops I found another article about preventing or at least postponing glaucoma from those drops. The article also says that if you eventually do get glaucoma then it will make conventional glaucoma meds such as latanoprost much more effective.

It is a combination of pycnogenol (pine bark) and bilberry. Did taking this help prevent me from getting glaucoma while I was on those steroid drops? I dunno, but I figure pine bark and bilberry couldn't have hurt me.

http://www.lifeextension.com/Magazine/2017/9/Reversing-a-Root-Cause-of-Glaucoma/Page-01?sourcecode=CVH701E&utm_source=zMag&utm_medium=email&utm_content=Article&utm_campaign=CVH701E

http://www.lifeextension.com/Vitamins-Supplements/item01514/Eye-Pressure-Support-with-Mirtogenol
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