0 inflammation, opinions?

[TaoOfMike]

I’m curious about experienced people’s opinion on my situation and what you would do? I made it as short as I could.

I was diagnosed with Crohn's in 2008, been on Asacol ever since. Couple months to a year ago or so ago I had an MRI which showed some inflammation. A colonoscopy w. biopsy the other day showed 0, no inflammation. Doctor described this situation as "lucky" and suggested either staying with Asacol, or tapering off and seeing how I feel. If any symptoms came back, call him immediately to get fixed back up. I've been super restrictive on my diet for the past 4+ years--no dairy, no lettuce or fibrous veggies, etc. I think I’ll choose to taper off the meds, and if it causes no pain, I’m going to try more foods.

 

[David]

Where did the MRI show inflammation? Small intestine or large intestine?

And how do you feel?

 

[TaoOfMike]

The MRI showed slight inflammation in the upper colon and lower small intestine. It's now normal.

How I feel changes. Some days I feel great, other days I feel bloated or cramp up. Sometimes it's related to something I've ate and other days it seems to be random. On average over the past few months, I'd say I feel pretty good.

 

[Jennifer]

TaoOfMike how do you know the inflammation in the small intestine is normal? Did you have another test confirming this? A scope can only go so far and can see into the the TI but personally I don't think it s great test when it comes to a more mild condition (where the small TI is concerned).

Its very possible that the Asacol and diet changes are what's helping you stay better. Asacol helps prevent further inflammation from happening so if you stop taking it its very possible your symptoms will return. Some of my more minor symptoms did return after stopping Asacol while in remission.

If you start to taper off the Asacol and make changes in your diet you may not be able to tell which one is causing you problems if either. You may want to do this one at a time. Whichever is up to you. Keep a diary of your symptoms and continue to have regular testing done to make sure you're in remission or clinical remission and go from there. Sounds like you're doing rather well. Asacol was a very mild drug for me and I never had any side effects from it.

In my opinion if its isn't broke then don't fix it. Since you're having minor symptoms I don't see why your doc would want you to come off meds because it sounds like they aren't convinced that you wont flare up again and will likely put you right back on them.

 

[TaoOfMike]

I was referring to the end of the small intestine and colon as "normal" meaning there is no inflammation now.

When I said tapering off and trying new foods, I would be keeping my meals the same until afterward. I'm on 3 pills a day now, so I would consume 2 pills a day for 1 month, 1 pill a day for one month and 0 for one month and see if, after 3 months there is no pain, start trying common foods that I have avoided like milk, salad, etc.

I didn't know the Asacol was preventative and would really hate to think that I got this good news just to be told that my diet can't change. I'm sick of the limitations.

 

[Jennifer]

While in remission there are no food limitations unless you're lactose intolerant or have food allergies. I eat whatever I want but I keep my remission in check with medication. I rarely hear of people in remission with no food limitations who aren't on any sort of medication unfortunately and if they are it doesn't tend to last for very long.

My sister is on no meds (not fully by choice, she has no insurance right now but she hates the idea of meds anyway and would probably only take them as needed) and has symptoms from time to time like diarrhea and blood in stool but she tries changing her diet and waiting it out. Really not the best thing to do because she also doesn't have regular testing done so its unknown how much damage there is. Could be a year at most with no symptoms for her.

Can you add the food back before you try going off the Asacol?

 

[nogutsnoglory]

Are you aware of any changes that have occurred between having inflammation on the MRI and when it showed up normal on colonoscopy?