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Lots of questions about Lymphocytic Colitis

So, with the path results coming back as they did, I have a ton of questions. Obviously, the internet provides very limited information regarding this condition. I have a few questions for you more experienced patients.

Do you find that your symptoms wax & wane over time, or is it consistant?

Where do you notice your pain at most of the time?

Have any of you ever experienced eye/lid swelling? I have been having a random swelling for the past few weeks, off and on, of my lower eyelid (multiple times) and upper eyelid (once) near the inner corner. It looked like mild pink eye, or a stye, but spontaneously resolved itself.

None of the sparse information I was able to find mentioned anything about mucus in the stool. That has been a big feature that I have been experiencing as well. Is that also a part of the disease process?

Perianal symtoms: Another thing that I haven't been able to find any information on was perianal symptoms being associated with this type of IBD. I have pain, itching, a skin tag, as well as bleeding with straining or particularly violent/frequent bm's. The blood is red, very fresh, which led me to believe it was a fissure-no internal hemorrhoids on scope, no visible external ones.

Any thoughts would be appreciated :rosette2:
 

David

Co-Founder
Location
Naples, Florida
Do you find that your symptoms wax & wane over time, or is it consistant?
Mine wax and wane, especially depending on how good I am with my diet and exercise. Before I figured out some foods I have to avoid and various exercises that help a lot, my pain was nearly a constant 6 or so. I now have periods of time where I have zero pain. This past week it has been a 5 or so because I have been bad. Mmmmm, nachos.

Where do you notice your pain at most of the time?
Lower right quadrant. I also have eye inflammation and inflammation of the connections to my sternum (costochondritis).

Have any of you ever experienced eye/lid swelling? I have been having a random swelling for the past few weeks, off and on, of my lower eyelid (multiple times) and upper eyelid (once) near the inner corner. It looked like mild pink eye, or a stye, but spontaneously resolved itself.
Yes, and it is MISERABLE. The things that help me with this the most:

1. A neti pot twice a day. I don't know why this helps so much but it does. GET AND USE A NETI POT. If you don't know what it is, let me know.

2. Strict adherence to my diet helps a lot. If I'm flaring especially bad I go to Whole Foods and buy organic broccoli, cauliflower, cabbage, carrots, and whatever else they have organic and make a soup with a ton of turmeric and other great spices in it. The juice is especially important to drink. I live on that for a few days and it makes a HUGE difference.

3. Taking turmeric (500 mg twice a day) helps a LOT. Seriously, use Turmeric or Curcumin. You can read about it here.

None of the sparse information I was able to find mentioned anything about mucus in the stool. That has been a big feature that I have been experiencing as well. Is that also a part of the disease process?
That was something I experienced when I was at my worst. I especially enjoyed the anal leakage that accompanied it. Cutting out gluten, eggs, corn, yeast, and soy solved that for me. I only eat organic foods (unless I go out with friends and lose all control :cry: ) and pretty much cook everything from scratch.

Perianal symtoms: Another thing that I haven't been able to find any information on was perianal symptoms being associated with this type of IBD. I have pain, itching, a skin tag, as well as bleeding with straining or particularly violent/frequent bm's. The blood is red, very fresh, which led me to believe it was a fissure-no internal hemorrhoids on scope, no visible external ones.
Can they see a fissure? If it's not hemorrhoids or a fissure, then it's not Lymphocytic Colitis as it doesn't cause bleeding.

I had terrible itching until I cut out the foods I mentioned.

I hope that helps :)
 
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