Maintenaince Meds Decision

[JLOptimistic]

Met with L's GI doctor yesterday. The Asacol isn't doing the trick unfortunately. Stopped the bleeding but still had the stomach pain/cramping and diarrhea. Didn't make it worse but didn't really improve anything.

We're going ahead with Prednisone in two weeks time. He has his final immunizations scheduled next Wednesday and then she wants to get an MRI done in the next two weeks to rule out any infection as he's having tailbone/butt muscle pain but doesn't appear to be GI related based on physical exam but better safe than sorry.

She's told me that I can do a couple of things in regards to maintenance meds:

Do the Prednisone and then start him on the Asacol again to see if it can keep him in remission once the initial inflammation is under control. If it works, it keeps him off immunosuppressants. If it doesn't, then he's on steroids for that much longer to switch him to Imuran/6MP

or

Start him on Imuran/6MP shortly after he starts taking the Prednisone. Hesitant/scared as it's an immunosuppresant and I think that's a pretty common reaction to making that decision.

He's mild/moderate UC so that's why the doctor isn't pushing hard on the 6MP. Yet.

As I'm typing this, I think I know what would be the best course of action but hoping to hear some objective opinions from parents who've been down this road already? Appreciate any replies to this!

 

[Maya142]

We went straight to biologics but I will tag some parents who may have some ideas:
my little penguin, Clash, crohnsinct, Mehita, Tesscorm, pdx, Kimmidwife.

UC is a little different than Crohn's because sometimes 5-ASA's work (whereas in Crohn's, it is much more common to go to an immunosuppressant or biologic straight away).

My inclination would be to go to 6MP or Imuran (or MTX -- not sure that's an option?) and minimize the time on steroids. Pediatric IBD tends to be more aggressive and if you've already tried Asacol, I wouldn't mess with it much longer.

The butt/tailbone pain is common with juvenile spondyloarthritis. It is a common symptom -- often referred from the SI joints. Typically, the pain is worse after sitting or inactivity and gets better with movement. For example, sitting through a movie is very hard for my daughter (both my girls have JSpA). Morning stiffness is also common. JSpA is associated with IBD.

There was also one kiddo who had tailbone pain and it turned out to be an abscess, but that is an issue with Crohn's and not UC typically.

 

[my little penguin]

Ds started on pentasa at Dx at age 7 which he promptly failed
And we went the route of 6-mp / steriods
Since the med takes a while to be effective I would try the 6-mp
Ds trailed it for 8 months
Unfortunately for him everytime he got to therapeutic levels
His liver enzymes would go up

Very glad we tried it though
And may be switching from mtx woth humira to Aza instead

Getting the disease under control as quickly as possible with the least amount of steriods is our goal

Ds has had 3-4 rounds of steroids for 4 months each so we really try to avoid them like the plague now

Hugs
Never easy

 

[Tesscorm]

Tough decision. Does your GI have a preference as to which route to try? Why?

When my son was diagnosed, he was initially treated with IV flagyl and then started on exclusive EEN, which took him into clinical remission. He then continued with supplemental EN (using NG tube) only for two years (only med was nexium because NG tube gave him heartburn). This kept him in clinical remission (no symptoms) but tests showed continued inflammation. Upon transfer to his adult GI, the new GI was not comfortable with simmering inflammation and was concerned it was a matter of time before complications arose (no one can guess how much 'time' ). His recommendation was remicade. He's now been on remicade for approx. 4 years.

While I'm grateful we were able to hold off on meds for a couple of years, I would not be so grateful if it had resulted in the need for surgery! It's a very tough balancing act... hard to accept that your child needs these meds but you don't want to find yourself in a position where things have worsened. Unfortunately, you don't always get much advance notice that things are worsening. :ghug:

If you trust your GI, I would go with your GI's recommendation. If your GI suggests giving asacol another try (as was said above, asacol can work for UC), ask about follow up/maintenance testing - what tests, how often, etc.

As far as back pain, my son had back pain prior to diagnosis. As he had injured his back, it's hard to say for certain if it was related to his crohns. However, one GI did say it could have been referred pain. Coincidentally, his back pain went away once his crohns was under control (but, could also have been coincidental timing). I don't recall him having butt pain but his back pain was lower to mid back (sometimes even upper back). We did x-rays at dx but nothing was seen (and, as I said, it resolved itself).

Just in case no one's mentioned it, do not take advil, ibuprofen, any nsaids for his back pain (nsaids are bad for IBD). Pre-dx, my son's ped had recommended he take advils before hockey games/practices to fight off the back pain, I still wonder if all those advils could have played a part in triggering his crohns. Tylenol is ok.

 

[crohnsinct]

My daughter has Crohn's but it is almost all colonic and her doctor says she has proctosigmoiditis (basically UC in the sigmoid colon and rectum). Do you know exactly where your son's disease is? My daughter is in a flare and we are hitting it with a topical treatment (a rectal foam). This works a lot with UC and from all the reading I am doing lately it seems most GI's like to manage UC with oral and topical therapies (enemas, foams, suppositories). Once in remission, the combo can change a bit. I would ask about this.

I also tend to subscribe to your GI's theory in that getting the disease into remission and handing a maintenance drug a healed colon might help it work better. My daughter has Crohn's and was very severe at dx so we went straight to Remicade with prednisone. Every time we tried to taper the steroid she would flare so it seemed the Remicade couldn't really hold her disease back. Rather than switching meds, we did a round of exclusive enteral nutrition to get her colon well healed and then Remicade was able to take over from there.

Here is an interesting article that I recently came across.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886411/

Good luck with whatever you decide and please keep us posted.

 

[Mehita]

How old is L? Has puberty hit yet? Sorry, I haven't been around much and am not familiar with your story.

 

[JLOptimistic]

Thank you everyone for your advice! It was much appreciated in trying to figure out best course. After my initial post, I came down with a brutal cold that was probably brought on by the stress of everything coming to a head so not able to respond right away.

We had to wait 2 weeks for the MRI results. All clear. Also found out that L had fallen on his butt while walking his uncle's dog which is likely the reason for the pain.

He started the Prednisone last Thursday so today's the 5th day. First couple days were rough with him complaining of his eyes hurting in the morning. He's scheduled for an eye appt this week so kept an eye on it but seemed to resolve itself by the weekend. Weekend seemed to go well. Got to school about an hour late on Monday but stayed the whole day, got to school on time today which makes it the first time he's done 2 days in a row since school started.

Tesscorm-L's doctor basically said we can try the Asacol again but she thought it was unlikely to work and if it didn't then he'd likely end up having to do another round of steroids while we wait for the Imuran to kick in.

Crohnsinct-I believe his doctor said she only saw anything in the large colon. His prep for the colonoscopy/endoscopy didn't clean everything out so she wasn't able to see everything but based on his symptoms and large parts she was able to scope that she's confident that it's UC.

Mehita-L is 11. His doctor asked him about various puberty signs and apparently he has some. Biggest concern at the last appt was that even though he hasn't lost a lot of weight, he hasn't gained much either. Fallen from the previous 75 or 90th percentile to 50th. No real growth on height as well.

We've decided to go the Imuran route and L is on board with this as well. We tried the SCD diet while we were waiting to start the Prednisone and it made very little difference plus he cheated constantly which is kind of what I expected as he's 11. Basically he wants to keep eating as healthy as he can but he wants to be able to hopefully eat more foods and/or some treats without his stomach revolting everytime.

Fingers crossed that he can do a smooth transition to Imuran and he's able to start living his life again.

 

[my little penguin]

So glad you were able to make a decision

Making a decision is the hard part
Hope things improve quickly
Good luck

 

[pdx]

Hope it works well for him!

 

[Maya142]

Hope it works well for him! My daughter is on Imuran too and was nauseous for a few days, then got used to it. No side effects after that!

 

[Farmwife]

Hope it all goes well and he starts to gain and grow.