My son is 11 is has been diagnosed with Colitis and Celiacs

Hello,

My heart is so broken for my son. Basically, he has been sick for about two months now. He had a colonoscopy/endoscopy on July 8th and was diagnosed with both diseases. He goes to the bathroom 2 to 3 times a day with watery, bloody stool. He has been sitting home for 3 weeks now, waiting for his medicine to kick in. He is on Lialada (one tablet, twice a day) and today he started 30mg of steroids. The Lialda itself did not seem to help so the GI dr is putting him on steroids to hopefully stop the diarreah and bleeding. We are also on day 3 of the Specific Carb Diet. My question is, is anyone else on this diet and how long until the steroids kick in. I am not thrilled that he will be on steroids for a few weeks (starts at 30mg and then every 5 days or so his dosage goes down), but it seems like he needs some help to get a hold of his bowel movements. He starts middle school in less than two weeks. I am just hoping that he will be ok by then.

I would ask your dr about hydrocortenema...Rod

Hi Busy Mom

Sorry your child and your family (including you) have had this happen to you. The first thing I'll say is try not to get stressed over deadlines like "he starts middle school" and you want it better by then. UC has a timeframe and mind of it's own.

Good idea to try diet modification, have you been to pecanbread.com? It seems more geared to kids than SCD. My remission came from diet mod. not Rx meds and I tried many diets over the years. SCD helped but ultimately was not my answer, hope it works for you and him.

My big suggestion is to start mesalamine enemas ASAP. They really work on the lowest area that meds do not reach. That's because they are topical and hit the exact area most needed. Please get an Rx for them. They are "retention" enemas not the kind you take as a laxative.

No, not fun for any of us to use enemas but they really work and have almost no side effects like some of the others. Takes time to get used to them, for him and you. Teach him how to use them with rewards for good useage (video games?).

As far as steroids don't become attached to a schedule of decreasing doseage. Until his symptoms are under control there should not be a decrease in meds. Once symptoms subside maintenance meds (like the Lialda) take over for pred (hopefully).

Is his GI a pediatric GI? Hope so.
It takes time to realize UC is a lifetime reality but not death sentence.
Try and stay calm because your son takes his reaction from yours. Can you find a support group for yourself and husband?

Yes, I agree with PathogenKiller, the SCD should help a lot because it is a gluten-free diet. Is he committed to following the gluten-free rules once he's out of the house? It's probably too early to tell, but it is so important for him to stay GF.

Hey there! A mix of UC and gluten free is not as difficult as it seems once the flare-up is under control. First off, if tapering isn't working, I suggest Remicade. As soon as possible, if possible. I had my growth stunted because I was on prednisone during developmental years, so I'm against using it for extended amounts of time. While a lot of people prefer Humira, Remicade is a lot easier at that age. Humira requires you giving yourself a shot, which was too scary for me to handle even when I was older than him. Remicade allows him to be put to sleep with benadryl or watch a movie in the hospital. It's more relaxing than it seems. Also, they can do blood work right there, so no extra needles. Make sure to ask what's in each pre-medication they give if you go this route. My mom always chose to opt me out of one because it was a steroid used to make sure I didn't have a reaction. I took it the first time, but beyond that, we decided it was best to avoid any steroids.
With the diet, search Paleo. It's easy to cook, easy to deal with, and oftentimes very yummy. Just experiment with it as you go. Also, try giving him a bland diet where you choose one item to add in at a time when he's feeling better. Like give him gluten free mac and cheese one day to see how he responds to soft cheeses, salad to see if he can digest it, etc. It's nice to try one at a time. Additionally, make sure he ALWAYS has snacks in his backpack when you send him to school. Make it yummy things, like gluten-free chicken nuggets or the gluten free cheese-its. It'll help him resist eating all the vending machine foods or things his friends hand him. Check out small local stores with vegan-sounding names to find a large gluten free selection. Also, Udi's bread and bagels rock my socks off. Check it and glutino out.
I hope this helps a bit!

Hi there, so sorry to hear about your son.
My son was diagnosed with pan colitis when he was 10, it is heartbreaking.
But this place gave us hope and he is doing fine for the time being.
He is now 15 and I am struggling to control what he consumes, but so far no bad signs.
Quincy on here states loudly, you must treat him from both ends, that is the best advice. My lad is now on salofalk foam enema every night, it's very comfortable, and doesn't stress him out. He is also on 6 x pentasa tablets a day.
He first had to take suppositories, that was not pleasant the first night, he was frightened and very upset, mum helped him for a few weeks and then he was up and running himself.
Consider getting rid of dairy, milk fats are not good, and neither is the lactose. No fizzy juices for as long as you can control that. Drop the red meat, be strict about sugars.
Get rid of the gluten, you have no choice if he is celiac, none of us should consume gluten, it just doesn't agree with human digestion, but some are more sensitive to it than others.
Read up on the wealth of information on here, it is a life saver, and there is a lot of supplements that will help in the long term.
My son is a fit and active 15 year old now, playing basketball for his country.
There is hope, get reading, and good luck.

Steve
xxx

so sorry to hear that your son is struggling with this. i am on SCD diet for 3 months now and i can tell you it helped with diarrhea, bloating, pain but not blood, i had to use solofalk suppositories and it wasn't fun. a few weeks ago i read about RS diet on this site and gave it a go and for the first time in 5 months i don't have any blood for a week without any meds