j-pouch for 9-year-old?

My 9-year-old son was diagnosed with UC a month ago, but it's been working on him for at least 2 months before we knew what it was.  Now in extreme flareup, entire colon, 2 weeks in the hospital.  Started with oral prednisone and imuran, then IV prednisone in hospital and IV hydrocortizone with more imuran.  First dose of Remicade 4 days ago.  All to no effect.  Still terrible cramps, bloody stools, 8-12 times per day.

We've been given 3 options for the moment: 2nd dose of Remicade, try Prograf (used primarily for organ transplant patients), or move more quickly to the 3 step surgery leading to a pouch.

Anyone with experience to offer?  Docs don't seem to have strong advice one way or another.  Pouch surgery comes with its own set of problems, especially for a 9-year-old, but we don't know how long to wait this out to try to keep his colon.  Or even if there's a significant upside to keeping his colon at this point.

Thank you.

So sorry about your son's diagnosis.
I have Crohn's (another IBD) and usually don't reply on the UC forum, but I just couldn't help it. I hate when kids suffer with IBD.

There are lots of parents of UCers and CDers here who have faced hard decisions for their kids' treatment.
If you want to try to avoid surgery so soon, I suggest that you might want to look into drastic diet measures like Specific Carbohydrate Diet, it's the only one I know that has had good reports for both UCers and CDers.

Of course, you don't want your little guy to suffer any longer than he has to, and though the diet might bring relief soon, there's no guarantee. But for many, it can bring huge improvement, even remission.
I don't do the SCD myself—too many negative reactions to some of those types of foods.

I've also heard VSL3 probiotics is good for UCers (as are many multi-probiotics), but hopefully someone else will come along with more info on other options.

Hope your son feels better soon.

Best wishes,
Roni

I agree with ugh just ugh. Imuran takes awhile to work its full effect it has to build up in your system first so it still will take awhile for your son to notice a change. The steroids should start to work straight away but be aware they will not fix the problem they will reduce the severity of the flare and if your son is having a really bad flare it may take a little time aswell before you start to see him getting better.. Its hard as a parent to make the decision of surgery for your child as he is not in a position to make this decision for him self..If he is not a risk of a rupture or complication i would wait a little bit longer if you can to see if the drugs start to kick in.. I would hate for you to jump straight in and have surgery and then regret doing it later.
I have had uc for 11 years now and have been on imuran and steroids for most of that time and just recently had a bad flare and put on prednisone aswell along with the hospital stay and iv treatment. It took me 10 days before i could go home and i am still recovering and that was 8 weeks ago. So that gives you a time line of recovery in different people.
Hope all goes well for you and your son. Nothing is worse than seeing your child in pain. I feel for you Good Luck xxxxxxx

sorry you're having to deal with this. i was in your shoes a few months ago. has crohns been ruled out? has he been tested for c-diff? after a lot of trying and research we decided that surgery was a better choice for our child. here's the thread about our struggle: https://www.healingwell.com/community/default.aspx?f=38&m=1902940

remicade is often very harmful to children and we decided it just wasn't worth the risk. my son had a pull through rather than j-pouch because he is so young and still developing, so i can't say much about the j-pouch except that his chances are better if you find the best surgeon. you should definitely get on jpouch.org and ask questions there. most people who have surgery wish they'd had it earlier and don't have many (if any) problems afterward. My son tells me all the time that he's happy we chose surgery and he feels much better than when he had UC.

Yes, I think you are correct. A short term fix (if that), then surgery anyway.

There are such things as a fast and furious case of UC. I think it's called fulimant? Anyway, it's resistant to treatment and surgery is the only option. I have met lots of UCers who had UC for only a matter of days or weeks but had to have surgery because in these cases drugs just don't work. I think it's harder to get your head wrapped around the idea of surgery when one has fulimant UC because one thinks there should be a way to gain remission.

I definitely think you are making the right choice.

Sue

aragon

My daughter just had surgery on Monday the 7th. I was where you are now,but she is 15 not 9. We tried the remicade. We were going every four weeks. She might have only had a couple of weeks of feeling okay. Not great . It came to a point where she even said enough I am tired of being sick all the time. Her surgery took four and half hours. After waking up from recovery, she cried and said so was happy, her stomach doesn't hurt anymore. I know deep down this was the right decision. The day after her surgery, her color even started coming back.

My prayers will now include your son. I was diagnosed with Pancolitis and hospitalized as well, he'll overcome all this and I wil pray you receive the right guidance.

Have you looked at putting your child on the SCD diet?

 

God's Speed for a full recovery and a normal life for him!

Surgery went without a hitch today. Done laproscopically, so less of a recovery. Surgeon said that the colon looked awful, giving us confidence that we made the right decision for our boy. Much gratitude to all of you.

I am really sorry this is happening to you. i hope it there is a solution, I have never heard of this complication :(

I think 3rd day after surgery is often a tough time but things should start getting easier I would imagine. Have you posted on the Ostomy board here on HealingWell? You may find some answers there. Your family will be in my thoughts.

Oh I am so sorry. If it helps, Dillon also had problems peeing for the first 3-4 days....it did resolve on its own. It must be such a worry for you though. It is also quite common for the bowels to shut down on the third or fourth day. It is called an ileus and Dillon also went through it as well....on day 4. It is simply the bowels saying that they are not ready to work yet and need a few more days of rest. I know that these are such hard days for you but don't lose sight of the fact that his colon was so diseased that it absolutely had to come out. I am sure that there will be better days ahead.

Your family is in our thoughts,
Cathy