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swollen eyelid and canker sores

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Crohn's Disease
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Posted 6/26/2014 8:52 PM (GMT 0)
I'm not sure I'm going to do anything about this, but I always value your thoughts. I am back at work and the D is dramatically improving...most days I'm having normal poop, which hasn't happened in many years. So I think I'm recovering quite well from the resection surgery.

But I have canker sores in my mouth and my eyelid is swollen, which in the past were usually my body's clues that a Crohn's flare was there or on it's way. I do get really tired at the end of the day, but I'm only working part time (about 25 hours/week) When I left the hospital I was anemic, with Hemoglobin at about 10.2. The surgeon said that is normal with surgery and my own body would correct for that. He didn't recommend follow up blood tests unless I didn't feel well in "3-4 months."

My current plan is to take no meds (recommended by both my GI and the U of Chicago specialist) and do a colonoscopy in 6 months. I don't have a GI appointment until October.

So, do you think this is just normal tiredness from surgery recovery? Or do you think the canker sores and eyelid stuff is worrisome? I'm guessing I should just wait it out a few more weeks, but I feel more secure checking in with you folks to see what you think. Thanks for listening!!
Posted 6/26/2014 9:07 PM (GMT 0)
Hey, a wake-up call should not be ignored. If canker sores and swollen eyelids are the proverbial "canary in the coal mine" for you, then act on that info now. Maybe that just means you get CRP and hemoglobin tested. I'd call the GI today.
Posted 6/26/2014 9:16 PM (GMT 0)
My CRP never elevates...Dr. Rubin said that is genetic and some with some people it never does. But I can get blood work. I just don't know how my doc could interpret it. If I'm still anemic, it might still be surgery recovery. Thanks though...I am kind of concerned, although I strongly suspect my doc will not be too concerned.
Posted 6/26/2014 9:32 PM (GMT 0)
I'd get your Chicago doc involved too. Your local GI doesn't have a good history of taking any of your issues seriously. If blood work is not the right assessment, ask for fecal calprotectin, or go straight to another scope (maybe abdominal MRI?), which I think you would not want at this point.

I think you're playing with fire to go without meds at this point.
Posted 6/26/2014 10:13 PM (GMT 0)
Dr Rubin from U of Chicago's logic is that he doesn't want to put me on biologics in absence of disease as he believes that I may have had the Crohn's since childhood and it is very slow moving. So I may have many years remission before needing anything. If the disease recurs, we will probably move to biologics, but he wants to save them until I need them. U of Chicago was one of the first places to use biologics, so I know he is hesitating to use them for a reason. I'm going to give it a week or two and see which direction I'm heading, but yeah, my GI here does not really seem on top of things.
Posted 6/27/2014 3:16 PM (GMT 0)
Gumby, this last note of yours bugs me. We just had a long conversation on another thread about how important it is to use biologics early for aggressive disease. You might say your disease is "mild," but you probably need to do some reading about how DRs classify Crohn's. You've had obstructions multiple times and have never really been in remission (despite what your local GI believes). I wouldn't think this is called "mild."

If you wait until you have developed enough symptoms to say for certain that your Crohn's is active, based on your prior history this seems like too long. Your Crohn's seems to be rather insidious, causing structuring even while you don't lose a lot of weight, or have terrible diarrhea, etc. Have you ever had the fecal calprotectin test? What would be the downside of that?
Posted 6/27/2014 4:48 PM (GMT 0)
Hi Kazbern,
Thanks so much for responding. Dr. Rubin from U of Chicago really believes that although I wasn't diagnosed with Crohn's until 2007, I had constipation and IBS issues since childhood. He thinks the structuring in my ileum may have been going on for 20 years or more. I have no idea if this is a correct assumption because I never had problems with anemia until around 2006. Anyway, that is why he is classifying it as mild disease. As NCOT pointed out, even mild disease causes damage over time. The assumption is that the Pentasa I have been on since 2007 didn't do anything useful. (I still think it may have protected my colon, but who knows.) I also was a bit surprised when they decided to put me on no meds in the interim. But I think Dr. Rubin is looking at risk/benefit of the biologics, and at the moment, the surgery removed all of the Crohns. We all know it will come back, but he is betting on it taking a long time.

My local GI didn't know how to send for fecal calprotectin, but Dr. Rubin told me that he talked to him, and he does know where to send it now. So your point is well taken. Dr. Rubin's plan was to wait 6 months for the colonoscopy, and then follow with fecal calprotectin tests after that. If the canker sores keep up, I'll call and ask for it sooner. Thanks for listening and for all of your help!
Posted 6/27/2014 5:00 PM (GMT 0)
Why wait for more info? Canker sores are a sign for you. Swollen eyelids. Fatigue? get a fecal calprotectin test now.
Posted 6/27/2014 5:29 PM (GMT 0)
Hi gumby,

With Ides busy with her family for awhile I am going to try to pop into the forum when I can or if you see something that needs the attention of a Moderator - shoot me an email smhair Canker sores, for me, are usually from my chemotherapy.

If your past pattern has indicated you are probably in the early stages of a flare up, I agree with the others - at least give your Dr. a jingle.

Thinking of you,

Kitt

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