New to community - Rowasa question

Hello folks. I was recently "officially" diagnosed with Crohn's disease (due to ulceration in the terminal ileum found on video capsule and in initial colonoscopy) but am being treated for UC and have been in an active flare for over two years. My GI doctors seem to alternate in what they are calling it, but since the disease flare is mostly in the colon, I feel more comfortable here.

It's been a rough two years, to say the least. In 2015, I had my first colonoscopy which found the proctitis, as well as biopsy results indicating terminal ileitis. I was referred to a GI. At the time, I was on a High Deductible insurance plan, and going into 2016, I couldn't afford the testing needed. I tried probiotics, vitamin D, diet changes, and nothing helped. I switched plans in 2017, hence the new diagnosis - even though I was pretty sure what it was before.

I'm allergic to most steroids (hives and anaphlaxis from 2 types), so I've been running through a slew of various 5 ASAs. Canasa was useless. Lialda made me nauseous and increased bleeding and urgency. Uceris (another steroid) was a nightmare (caused worse D and urgency and led to several "accidents" which were humiliating). Right now I'm doing okay with Apriso (2 pills, not 4 - can't seem to tolerate full dosing of anything in this category of drugs) and recently started generic Rowasa.

I don't have much issue tolerating the Rowasa, and the urgency is down. I can keep them in all night. Thanks to these forums for providing tips on using them! Only some moments of urgency, but I manage to hold them in anyway. The bleeding seems to have changed, though, and I'm not sure if the change is something I should be concerned about. Rather than being the rather copious amount of bright red blood and mucous, it's now a dark reddish brown blood and mucous in a lower quantity - which continue with the same frequency throughout the day (5-10 times). Is this normal?

We've been tweaking and changing the meds for months now trying to find the right combination and I'm in a bit of a time crunch (in 2 weeks we're leaving on a 2 week cross country road/camping trip which I am just a little bit mortified about). Should I be asking to try something else or give Rowasa more time? (It's been a little over a week on it w/Apriso)

Any suggestions?

Thanks for responding, quincy. I definitely wasn't going to drop the meds. I just wanted to know if what I'm experiencing is normal. Getting my GI doctors on the phone is not easy.

They told me a couple appointments ago that they believe it's Crohn's due to the ileitis and ulceration in the terminal ileum, but are treating for the flare issues of UC. But, since then they've also referred to it as UC, which is annoying and confusing.

They mentioned moving up 2 drug categories if the Rowasa doesn't work, since I can't take the steroids, but that's not the preference for any of us. Especially since I also deal with asthma and chronic ear infections - which I can really only treat homeopathically or with antibiotics, since ALL topical ear meds have steroids. (And infections can be a serious issue on those next level meds).

It sounds like you had an inflamed colon, and there were also ulcers on the terminal ileum, so CD is suspected.

This is Chrons Colitis, and treated almost exactly like UC.

You need to cancel the trip now. You are sick.

Unless you want to try Imuran or 6mp, the biologics are up next - but they can take weeks to months to work.

good luck

Oh and yes...DB' s suggestion of cancelling is important to consider.
q

Darker red is normal with rectal meds...it's not making the bleeding worse.

q