Minimally active disease, but in a lot of pain.

[jennyfoust]

I was diagnosed with Crohn's about 7 years ago. I've had ups and downs since being treated. I've only every taken Pentasa, Prednisone, and Enticort.

I was doing really well this past summer. I was eating salads with romaine lettuce and spinach every day. I even started throwing in celery. I felt great. In September, I started to feel really sick again, and didn't know why. Went back to my diet of plain cheerios and turkey on bread. Too many trips to the bathroom, lots of pain, didn't get better.

Saw my GI, had the colonoscopy and small bowel series, bloodwork. His office called today and told me that the disease is minimally active and just to remain on my Pentasa. After the colonoscopy, he told me it wasn't as bad as he thought it would have been - only two areas affected.

I'm in the kind of pain that I was in years ago, when I had to take prednisone for 5 months. All day, every day, pain.

What can this mean?

Am I eating the wrong things? I'm eating my safe foods. I'm taking my vitamins. Am I not drinking enough water? (These questions are more like hypothetical, because there isn't really an answer without me experimenting.)

It's confusing. I was certain the inflammation would be terrible and I'd have to go back on steroids.




I don't know if this is the right category to put this post in. Maybe it should go in support.


Really, I wanted to ask if anyone else has had a situation where the disease was minimally active, but they felt really terrible? And what do you do when this happens? How do you cope?

 

[ronroush7]

I don't know if that is the case with you but I have to stay away from vegetables. You could try a food diary and see what foods aggravate your stomach. I am sorry you are in pain. Let us know how you are doing.

 

[tots]

I was taught that you grade your CD on two different levels
1- your symptoms on a scale of say 1-10
2- and then the disease process on a scale of 1-10

So for me my symptoms can be a 9 and the disease process only a 6. I guess this is on the good side as hopefully if I stay on this trend I won't need surg. As apposed to some one with little symptoms but, a badly diseased small bowel needing surg.

I hope you were able to follow that!

Hope you feel better soon

Lauren

 

[Axelfl3333]

Your not doing anything wrong,you may just have to cut back on salads and veggies again.i find I,m really up down with raw veggies and salad ,just have to adapt but you must let your doctor know what's happening.all the best

 

[my little penguin]

Ds can't handle any raw fruits or veggies
Everything is cooked to mush otherwise belly pain through the roof
Also found a few unknown trigger for him - chicken and wheat being two of them
Does it get any better if you drink all boost /ensure for a few days ?

Ds was in and out of the hospital last year same thing minimal activity but lots of pain
Finally pulled all food -switched to peptamen Jr only
Then slowly added in foods to figure out triggers
Later figured out it was Gastroparesis associated with crohns
Plus a few trigger foods

Just keep looking and log everything

Good luck

 

[Ian_H]

I know that for me and a lot of others Raw veggies can cause flares or perpetuate things. They are hard to break down and for me can cause some GI upset. Try a food diary like ronroush7 said. It helped me figure out what to stay away from!