Back from hospital - have some things to think about - thoughts?

History

Since 2002 I have mostly had proctitis and treated with suppositories and enemas.

There have been 3 or 4 flares with bloody diarrhea and urgency since then, some lasting a month or more, but usually brought under control with more 5-ASAs or a week of prednisone.

Last scope in June 2013 showed mild inflammation in rectum, good everywhere else.

Manageable, never been hospitalized. 1 BM regular every couple of days. Occasionally with a little blood.

Current Flare

As you may have read from some of my other posts, I started a new flare in about late March, first with some daily cramping/gas pains, then loser stools into April. Up to 1 BM a day (from 1 every 2 days).

Upped 5 ASAs to high levels : 3.2g Asacol per day, 4g enemas nightly, 1g suppository nightly, things don't improve.

Into May, GP adds 50mg/daily pred for a week, things don't improve.

As May progresses I start getting more bloody diarrhea, once per day, followed by a normal BM later in the day. Cramping and gas pains continue.

GP adds Entocort 9mg (1 pill taken 3x daily), things stabilize after about 1 or 2 weeks, down to roughly 1 normal BM per day, sometimes with streaks of blood. Still get some days of diarrhea, not much bleeding though.

Mid June I get a little bit of black stool, I call GP, he puts me on Pantaloc and that weekend I start getting decent upper abdominal pain. Following week GP tells me to stop Pantaloc and Entocort and see if pain goes away and it does after about 2 days.

Diarrhea resumes daily. Have 1 diarrhea BM in morining and 1 normal BM in evening. Restart Entocort.

Finally get to see GI, he thinks things sound stable enough but need to assess via scope, earliest appt is in 2.5 weeks (end of June)

A few days later upper abdominal pain returns daily and I start taking max dose of Tylenol to get through day.

Eventually I only have diarrhea, once per day, sometimes bloody, upper abdominal pain continues, I feel like crap. Taper down Entocort to 3mg per day to see if it is related to upper abdominal pain.

This pain continues for a couple weeks until I decide I can't wait for GI scope (I had one more week to go before scope). I decide I can't take it anymore and head to ER last Tuesday.

Hospitalized

Initial assessment by ER doc is that my blood inflammation markers are a bit high. My upper abdominal pain doesn't appear while I am in ER. ER doc refers me to ER GI who decides that given the length of my flare and my bloodwork I should be hospitalized so I can get a full colonoscopy and endocscope the following day.

Scope the next day shows normal rectum, severe inflammation in descending colon with scarring, normal transverse colon, mild inflammation ascending colon. Upper GI is all normal. ER GI thinks this is weird, however, as it is not classic UC, could be Chron's but has labeled me as atypical UC.

Since entering ER I have had no more pain or bleeding. Even while prepping for scopes.

ER GI keeps me in hospital and puts me on IV pred : 40mg 2x daily for 3 days. I start eating solid food again and I am having 1 diarrhea BM every other day, no bleeding.

I am now still in hospital, and on 50mg oral pred daily. I'll get released if I continue not bleeding and stools form up and frequency stays once per day. Likely tomorrow.

Right now I feel alright and have no problems eating. No pain. Good energy.

GI recommendations

ER GI is recommending I stay on 50mg oral pred, tapering down 5mg per week, until off to induce remission.

To maintain remission, however, ER GI is recommending Imuran (feels time has come for an immunodiolator).

However, given my concerns about Imuran, ER GI did not think it unreasonable to try max dose of 5-ASAs to maintain remission (4.8g per day + 2g enema) given that, aside from upper abdominal pain, I did not have alot of bleeding or BMs per day.

Your thoughts?

This episode really freaked me out. I have never been hospitalized and outwardly, aside from the upper abdominal pain, I had some mild to moderate bleeding and a low number of BMs during this flare. It is also disappointing that my UC has progressed (yay! lucky 20%!)

Should I risk the Imuran, or should I give the 5-ASAs a good shot? Are there other alternatives I am not seeing?

j.

Wow. Good history. You do seem to have an atypical case. Most people when flaring are having 10 - 20 bm's per day or even more. You've been lucky so far in that regard. I think all this may have been avoided by being on and staying on Asacol right from the very beginning when diagnosed with proctitus but it's too late now. I really don't understand why doctors don't do this because it helps stop it fom spreading like it has with you. Personally, I would give your current regimen a chance before moving up to Imuran and add some good mega dose probiotics. But, bananagirl is also right. UC is often full of decisions.

I would take imuran because it takes a few months to get to a therapeutic level in your body
But meanwhile stick which the max 5 Asa

Everyone seems to freak out about Imuran until they start taking it and realise its not as scary as they thought. Any side effects should manifest quickly and you can simply discontinue. There are also some long term effects that regular blood tests will pick up on.

I'm not big on immunmodulators or biologics unless you really need them but with immunemodulators I think the side effect warnings are scary because they are usually referring to the higher dosages involved when using them for other things other than IBD. With IBD you take much lower dosages then the other things the drug is commonly used for. I think the main reason docs are now jumping on the biologic bandwagon before immunemodulators is because it takes much longer for them to work than the biologics and time lost in fighting the inflammation can sometimes never be recovered. Once damage is done it is done and it either takes a long time to heal or in some cases it may never heal completely, no matter what you do. Scarring is scarring and nerve damage is nerve damage. A lot can happen in the 3 months it takes the immunemodulators to work.

Thanks for the advice. Keep it coming! It really helps.

The ER GI felt Imuran and 6MP were similar compounds and therefore finds no difference in their safety or efficacy. Her protocol is to start Imuran and if there are issues switch to 6MP.