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Ulcerative Colitis
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Posted 11/21/2019 11:22 AM (GMT -5)
History: colonoscopy in July. Dr said I was flaring and put me on prednisone.
I’m off pred now.
My meds are salofalk suppositories 1000 mg 2 x a day and pentasa 1000 mg 4 x a day.

I’ve had 2 or 3 BM ‘s a day this week. Mostly 5 (mushy) or 6 (diarrhea). My most difficult symptom is fatigue.

My doctor is planning to suggest biologics (I had chest X-rays this week and I’m supposed to get a TB test). I fluctuate between going for it ... hitting it hard while it’s mild, if she thinks it’s best, or talking about waiting a few months and maybe trying retention enemas (I haven’t done this before) and eliminating triggering foods.

I will see my doctor in a week, that will also be the appointment where I ask her to explain what was going on with the colonoscopy. Thoughts?
Posted 11/21/2019 12:17 PM (GMT -5)
They should do a calprotectin test to see if you're even flaring/have inflammation since your symptoms are so mild. I personally would never have done biologics if I was having 2-3 BMs a day.
Posted 11/21/2019 12:34 PM (GMT -5)
I generally have 2-3 bms/day and fluctuate between 4 & 5 even in remission depending on what I eat. 6 may not be ideal but I wouldn't call it diarrhea either.

I agree with Sara about having a calprotectin test. I also would try using enemas prior to biologics. You could increase your fiber intake (either food or supplements) to bulk up your stool.

Biologics aren't anything to be afraid of, but it doesn't sound like you have maxed out the lower level options.
Posted 11/21/2019 12:38 PM (GMT -5)
Certainly get n inflammation test like Sara mentions, maybe even another endoscopy (like a flexible sigmoidoscopy) to see what's going on.

Remind me again if you UC severity is mild, moderate or severe? And if you are proctitis, proctosigmoiditis, or pancolitis extent case?

It's certainly easiest to go on biologics when your symptoms are bad. Then it is a no-brainer. As your symptoms are mild it is a bit harder to wrap your head around. If you are nervous about the proposition, then you could certainly try the enemas for 3-4 weeks and see if it fixes what ails you. If not, go on humira/biologics.

There's advantages to stopping UC early on with strong medications before it can spread in extent and severity. It's the trend with top-down-approach of treating UC with strong meds early on. The old-school bottom-up approach would say to save biologics as a last resort. Pros and cons to each approach and depends on preference.

There's always the intermediate thiopurines (azathiopurine/imuran, 6-mercaptopurine) you could try if your case is mild, as well.

It's good to have a list of options, discuss them with your doctor and see what you two agree on.
Posted 11/21/2019 3:28 PM (GMT -5)
Try the enema as soon as possible before your symptoms become worse.
Posted 11/21/2019 7:43 PM (GMT -5)
Thank you! I’m so grateful for this placesmile I don’t know anything about my flare or my UC in general. I’ll have lots of questions when I see my GI next week.
Posted 11/29/2019 6:09 PM (GMT -5)
Calproactin was 100, which my GI said is in the green zone, but she thinks it’s lower because I just came off prednisone. She gave me a standing order for lab tests every three months. She thinks I have Crohns because the inflammation is in two places, I think at the beginning and end of the colon. She gave me a booklet on inflectra and told me to make sure my immunizations are up to date and I get that TB test. I will see her in three months. She thinks the lab will show inflammation markers rising steadily. For now I’ll wait three months, and I’ll pretend that AID will save me smile
Posted 11/29/2019 7:01 PM (GMT -5)
Huh, very interesting. Sounds like a good plan. And you might not flare again any time soon. I had long periods in remission after coming off of prednisone for many years.
Posted 11/29/2019 7:39 PM (GMT -5)
It does sound like a good plan! I think I might keep this doctorsmile
Posted 11/29/2019 8:04 PM (GMT -5)
Haha. That's great! I really like my current doctor, too! So important!
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