Is this as good as it’s going to get?

I think that more time is needed. Your colon heals very slowly. Time will tell whether your therapy needs some tweaking.

And I don't think your "good as its going to get" is good enough. If there is pain there is inflammation. And sure, you can probably live with it. But it's not about that. Inflammation increases the risk of cancer. So it is in your best interest to minimize it as much as possible.

Ask your doc to do a check your remicade levels.

After about 4 months @ 5 mg/8 wks I asked my doc to check the levels because I just didn't think it was working as well as it should. I didn't have any antibodies but my Remi levels were in the low end of the therapeutic range so he upped me to 10 mg/8 wks. That made a huge improvement but stools would start getting a little looser about 2 wks before my infusion. We have now moved my infusions to every 6 wks and I am doing better. I feel good ... no symptoms at all anymore. A couple weeks ago I saw a lot of blood when I wiped that freaked me out but I am pretty sure that was from hemorrhoids, as it has gone away after using some steroid suppositories for a few days.

The max dosage for Remicade is 10mg/kg every 4 weeks so if you are not in remission yet there is plenty of room to adjust the dosage. My doc said it's not unusual at all to have to adjust things. You should get to feeling 100% well.

Congrats on the new baby!

CCinPA thanks . Yes I’m due to get my levels checked just before they do my next infusion which is 3 weeks today. Annoyingly here in the uk it takes 6-7 weeks to get the results... and may take even long right now with the whole cv outbreak. Thanks for the info re dosing, that’s useful to know. I just feel like no matter what I do, I can’t get fully well. Like I think I was doing well on humira but needed more time and then I just got antibodies.

Geezernow how long did it take you to get in remission on remicade? When did you get antibodies? How do you find entivyo?

Remissions can take 2, 6, 8, 12 months or more to attain. I know we want to be healed as of yesterday as flares bitterly suck. It took me about a year from first remicade dose to full Remission. It was slow and steady improvement month to month.

How bad is the pain? Mild cramping, double you over kinda pain? Is it only when you poop or random? Does the pain stay in the same place or travel around? Mild, traveling pains or cramps can be trapped gas or stool. Pains only when pooping are often peri-anal: fissures, hemorrhoids, abscesses, etc and you can try sits baths to relieve those. If the pains are random and moderate to severe then antispasmodic meds like bentyl could be tried to treat muscle spasms in your intestine. You could look at pancreatitis for severe pains.

My UC started 7 months after my fourth baby was born. I stopped nursing and within a week I had symptoms. I had UC from August 2006 to November 2009. I refused to take prescription meds. I healed my colon with the Specific Carbohydrate Diet, Vitamin E enemas, and 2 months of Asacol at the end to finally heal it. I have had three colonoscopies since then and my second one showed no sign that I ever had UC. It takes time for your body to heal. It took me over 3 years.

How are you feeling today? Has your gastroenterologist run any labwork yet to confirm/rule-out a flare?