GI wants to move me to Imuran + Prednisone

so do all the treatments now, and over next few months, go see the new guy. it will likely take 60+ days to get appt.

I agree, and that's always been my approach as well haha

I'm concerned if I do what DBwithUC said - which I think is pragmatic - then it becomes more of a difficult change if the new GI suggests a new regimen. plus I'd be going for blood work every 2 weeks while I wait for an appointment because of the Imuran.

I spoke with the new GI's office, they said they could schedule me for a consult in 14 days but they won't set anything up until my current records are sent over. I contacted the medical center and they said the records should be sent within a few hours, so I'm hoping the appointment stays open.

I also called my old GI, who has always been very helpful, on the east coast. He should be getting back to me soon. I am going to relay all of my concerns and questions to him, and if push really comes to shove, I'm not averse to flying across the country to get better care though I would really prefer not to.

The thing I'm concerned about still is: you say what I'm currently doing is "working," but I am still having this stinging during BMs and have this GI (who may or may not be overdoing it) telling me I need to get my inflammation down ASAP or I'll experience more complications/abscesses/fistulas. I don't know how seriously to take him.

That said: Prednisone and Imuran is so extreme, I'd really rather not start it unless more than one person concurs with this course of treatment. The GI yesterday said his goal is for me to get back to normal, but how is taking an immunomodulator that requires regular blood monitoring, causes temporary hair loss, makes it so you can't ever spend extended time in the sun, etc etc considered "normal?" It sounds EXTREME, and I'm not bleeding, bloated, feeling physically ill or having any complications beyond the stinging. I'm just so lost and confused and the only person who has tried to help seems to be pushing the nuclear button immediately. But maybe that's what I need?

Do you think 6-MP could be an option instead of the Imuran? I'm wondering if my GI prescribed the latter just because it's formulary.

It also seems the side effects of 6-MP are less severe than Imuran. Is that accurate?

Oh also just for the record: it looks like the blood work is scheduled to be every other week until mid-July, assuming I start the Imuran immediately.

Have you seen this presentation on risks versus benefits of immunomodulators and biologics from the Crohn's and Colitis Foundation of America? It's a good watch/read and helped me greatly when contemplating going on them. Nothing is risk free, but it helps to put the actual odds of things into perspective.

Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

The do I really need imunomodulators is a great question and worthy of some thought. Get the fear out of the equation, it's good to check for a second opinion if it will help you with what's the best path for you moving forward.

I was in a similar situation, in a near remission and my gasteroenteroligist suggested I go on 6mp when my symptoms were mild. I initially refused and flared up badly 3-4 months later. Then I went on 6mp pred and eventually remicade to tame it. That's me, and certainly not everyone's case. But it is a big part of why I try to explain that these meds aren't all that scary. Even asacol hd has risk of blood anomalies, liver damage, inflammation of the heart, and lots of other equally rare side effects. Yet, it's these other classes of medications that scare people spit-less.

Wow, ok so I just spoke with my old GI about what's going on. Here's what he said, per the notes I took on our call:

GI should assess disease activity before changing medication with significant side effects, if the inflammation is there treat according to where its located. Don't prescribe new treatment without doing colonoscopy. Get assessment of where inflammation is located before taking new medications.

GI doctor should see patient tissue before going on Imuran which takes 2 months and might be a bad medication for patient.

Pain in rectum after BMs could just be a small cut or fissure. Suggested an OTC product called Calmol-4 - cocoa butter and zinc oxide suppositories for rectal pain along with sitz baths. Pain in rectum when there aren't any other symptoms like blood, diarrhea, mucous and frequency does not necessarily mean it is a result of inflammation. A colonoscopy would reveal everything.

He said my GI's willingness to prescribe these extreme treatments without doing a colonoscopy (at any point during this process) leads him to agree with me seeking a second opinion.