can Moderate Pancolitis be treated with 5ASAs alone?

My son (now 12) had a childhood history of constipation and anxiety but never had diarrhea or sensitive stomach. In April he had sudden onset of diarrhea that would not go away and after three weeks there was lots of blood. Admitted to hospital, colonoscopy showed pancoliits varying from mild in some spots to severe in other.
In hospital he was started on IV steroids (8 weeks ago now), daily Melamine enemas, and 6MP. His diarrhea went away the day after we started the steroids and enema and has never returned! The biggest problem he has faced since being home from hospital was terrible constipation so we reduced enemas to 3x per week (on theory maybe they were causing swelling of rectum) and added in Miralax and that seemed to do the trick.
We have been very careful about diet (almost no processed foods, avoiding all emulsifiers, only cooked vegetables and limited fruit, no nuts, seeds, artificial sweeteners).
Very soon after starting the 6MP his liver enzymes were 10x what they should be, doctor pulled him off 6MP for one week, liver returned to normal, and he restarted 6MP at 1/2 dose of where he was and added in Lialda 2pills per day.
Well now, week 9, he is starting to see blood in his stool and I’m freaked out (blood followed a very stressful week for him but also followed a taper form 10mg steroids to 5mg). The dr thinks it’s likely that the low dose of 6MP is just not sufficient for him to reach therapeutic levels and yet he can’t tolerate full dose and so thinks we should pull him off 6MP and switch to Remicade. We went to see one of the top pediatric GI doctors in the country as 2nd opinion and he said he would not have even started a 12 year old boy on 6MP bc of their specific vulnerability to cancers---and certainly wouldn’t continue on it given the liver reaction...he votes for Remicade.

But as a mum it just feels wrong to jump to such a powerful drug when he has had never been tried on a less aggressive approach (such as Lialda with daily enemas or suppositories and careful diet). I realize that his case is moderate to severe (based on the colonoscopy) and it is pancolitis...but if we are going to pull him off 6MP what is the harm of trying a period of time on the less aggressive approach, especially since he has no diarrhea at all. If he can be on 5ASAs with increasing doses when having occasional flares why is that worse for him that being on biologics that produce a whole host of other side effects he has to deal with. He is also on daily VSL#3 which works wonders (if he forgets it he stomach is much more rumbly and gassy).

Has anyone been able to successfully manage moderate pancolitis on the 5ASAS (oral and rectal) and watching diet for triggers? Is it irresponsible to try him on just the 5ASAs, knowing that he will likely relapse at some point and need biologics anyway?

"Can Moderate Pancolitis be treated with 5ASAs alone?" I'm sure there's some cases that it has, how common is unknown to me at least. What matters though is what works on your son. As a generalization, I'd say that pancolitis cases tend to be more aggressive and therefore stronger medications are necessary sooner. So, immunomodulators or biologics are often appropriate.

Yikes, high liver enzymes aren't good, a sign of liver toxicity response. So, good the dose was lowered and his number are now within range. You can get a thioprine metabolites test to see if he is therapeutic range. It's a blood test, Prometheus labs invented it, but it's now available in generic through labcorp, quest diagnostics, and other labs that might be covered under your insurance policy.

6MP can be combined with allopurinol to reach therapeutic range without the toxicity response. So that's one option you have available to you. You can discuss it with your gastroenterologist. It requires biweekly blood monitoring while you're on both medications.

Biologics rarely produce side effects, especially a whole range on them. I've yet to experience a side effect on remicade and I've been on it since 2014. There are serious but rare side effects. The Crohn's and Colitis Foundation of America has some great information about risks versus benefits of immunomodulators and biologics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Often immunomodulators and biologics are taken simultaneously. There were a few incidence of lymphoma in adolescent males taking both immunomodulators and biologics simultaneously, so you might want to talk with your gastroenterologist about it. Not certain to happen, just an increased risk with that demographic.

If it were me, I'd likely go on just the biologic. As biologics work well for moderate/severe cases and have no blood monitoring. Can you experiment and try just mesalamine oral + rectal at maximum dosage? Sure, but you risk flaring up and it sounds like he's doing well at the moment.

I guess you'll have to weigh the risks and decide, just make sure you're using statistics and actual odds. Biologics and immunomodulators have very similar safety profiles. I'm a little surprised 6MP doesn't bother you, yet biologics do.

Hi MomofUCBoy.

I never got into remission on 5ASA drugs. I tried Azathioprine but got pancreatitis and couldn't tolerate it.

I was afraid of the biologics, really afraid of them. My doctor put it in terms of asking me about quality of my life, which with active UC, was not so good, so there's that to consider for your son. Everyone has to make their own choice and for me, I got over the fear and started taking Humira injections. The benefits are definitely outweighing the possible side effects, of which I haven't really had any.

Things have been steadily improving for me, I'm glad I got over the fear because it sure does beat bloody bowl movements 15 times a day and no sleep due to having to get up and go to the bathroom 2-3x's a night.

There's nothing easy about this, negotiating and figuring out the best meds, worrying about side effects...it can make you crazy.

Good luck to your son, hope he gets in remission.

I wanted to comment on one of the OP's concerns:
The biggest problem he has faced since being home from hospital was terrible constipation so we reduced enemas to 3x per week (on theory maybe they were causing swelling of rectum) and added in Miralax and that seemed to do the trick.

In my opinion mesalamine enemas help greatly to resolve constipation, they do not create it in my experience.

I get constipated when I eat food my colon cannot handle. I reduced fiberous foods (oatmeal, fiberous veggies like broccoli, nuts), eliminated most grains including wheat. Carrots and spinach make my gut happy and potatoes are loved. Resistant starch foods are good news.

Mesalamine enemas have been my rectums best friend but only in combination with diet modification.

Best wishes on finding what works for your son.

the simple answer mom, is yes - as IAC said, there are many current and past members on this forum who have only used mesalamine drugs -

to be honest, i don't know what severity my pancolitis was - not sure I was even told - based on my symptoms at the time i was dx'd, my opinion was severe -

i am now only using diet modification to treat my UC - so that form of treatment is successful as well -
the only caveat being it took many years to get to this point - but the only drugs i ever used were rectal and oral mesalamine (5asa) and prednisone -

there are many factors involved - i was fortunate that my lifestyle allowed me to be very sick at times while i found the right diet - your situation is completely different, but it would still be possible in my opinion -

i have no experience with the other drugs mentioned so have no real opinion one way or the other -

He is currently on 5mg prednisone, scheduled to go down to 2.5 tomorrow and continue to taper over next two week.
Thank you for the info!

I can't comment on the rest but I can say that the enemas (both mesalamine and steroid) are helpful for constipation. Many times the constipation is really caused by rectal inflammation so the meds that are put directly there will help. As the inflammation goes down in the rectum...the constipation should go away. I would use them for a good while nightly and then go down to a maintenance level and stay there. Remember UC always starts with the rectum (keep it happy with the rectal meds) and it puts the odds in your favor. Hope your boy feels better!
B

I have been able to for the most part. I've had to take pred for flare-ups about 3 or 4 times over the last 3 years. Before that, i used strictly 5-ASAs. Each time I had to take pred, it was because I wasn't diligent with my maintenance meds. I do find restricting processed sugar helps mitigate my symptoms as well.