HealingWell
Search Close Search
☰

Help son deal w Crohns pain

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/20/2019 2:31 AM (GMT 0)
My 13 yr old has Crohns. Diagnosed in Feb.
Tried a few steroids and didn’t work. Went so downhill as of July with weigh loss and he looks terrible. Now dealing w pain and running to bathroom.

He’s on week 3 of Humira and weaning off prednisone and budesonide.

Dr visit Monday but I see many deal w pain for a long while until in remission. What can I do for my poor kid in the meantime? Is there anything the Dr can do or give him?

Pain is sharp. Always on same side and then goes lower like gas pain and he runs to bathroom. He is starting to miss school too.

I hate this.
Posted 9/20/2019 2:45 AM (GMT 0)
I'm so sorry - it sucks so bad when it's a kid. When I was teaching, I had a 9th grade student with Crohn's. He and his parents were thrilled when they found out I had it. It made him feel more normal.

So that's really odd that steroids haven't worked. Have they done a stool sample to rule out something else as well? Not that he doesn't have Crohn's, but maybe he also has something else like c. diff. or salmonella or e. coli. The symptoms are almost identical. Usually I know it's one of those because I assume it's a flare and start pred and it doesn't work pretty immediately.

How exactly was he diagnosed? Colonoscopy? Is he seeing a pediatric GI?
Posted 9/20/2019 2:53 AM (GMT 0)
I'm really sorry to hear about your son.

How big is he (weight)? How much prednisone has he been taking, and for how long? When did he start it?

Where is his Crohn's disease located and how severe was it found to be? Did they do a colonoscopy? An MRI? Both?

Humira hopefully should start to kick in soon. Maybe don't taper off the steroids until the Humira has more time to work. Tapering too soon could be part of the cause of his worsening symptoms.

As for what to do in the meantime, what diets have you had him try? He should probably eat a fairly bland diet, like white rice, white potatoes, chicken or turkey without skin, bananas, peanut butter, applesauce, and maybe supplementary drinks like Boost or Ensure. Diets aren't proven to treat the disease directly, but they may help with symptoms.
Posted 9/20/2019 9:02 AM (GMT 0)
My Daughter was diagnosed at 13, so I know what you're going through. I agree with the previous posters. Prednisone should have worked out better for him. Did he do a full 8 week tapering cycle? You could be steroid refractory, and might need to go back on maybe 15-20mgs. of Prednisone, and taper more slowly. This should give him the time he needs for Humira to take hold. Not sure how long Humira will take to give the optimum therapeautic response. Remicade on the other hand is usually very fast. Surprised they didn't opt for that. Agree also with having more tests done. Has Celiac been ruled out?

In the meantime, stick with a low residue diet for a couple of weeks. Really hope you get things under control soon. This disease can be very difficult to deal with, and could take time to get under control, but he'll get there. Also, he's young, and the advancements in treatment are on the horizon. In his lifetime, he'll see much better treatment options than they had years ago. Keep us posted.
Posted 9/20/2019 10:49 AM (GMT 0)
He’s been on budesonide for a long time. Now that I look back he only had symptoms of blood and loose stools on that. Better than pain. Started on 6 pills a day now down to 1.

Prednisone-started at 40mg day for 2 weeks. That seemed to help. But then we tapered to 30. 2 weeks later 20 which is what we are on now.

2 colonoscopies and MRI and 2 endo

Crohns. Inflammation in several areas of colon.

I’ve just heard prednisone called “the death drug” so keeping him on it scares the hell outta me even though he has done well on it.
Posted 9/20/2019 7:09 PM (GMT 0)
Budesonide isn't quite as effective with Crohn's as prednisone, but it does definitely have smaller side effects.

Prednisone is pretty rough on the body, and you do want to avoid it until it's necessary. But when it IS necessary, it does a great job. It's better to have a lower taper and be on it longer, than to try to taper too quickly and then end up continuing in a flare. As someone on this forum once called it, it's the "devil's tic tacs" lol.

Instead of dropping 10 mg every 2 weeks, you can do a taper of 5 mg every week. It's the same amount of time on it, but it allows your body to adjust more slowly.
Posted 10/4/2019 11:12 AM (GMT 0)
Hello

So sorry to hear about your son. My heart goes out to you.

Why hadn’t he been put on nutridrinks? Sipping is the first point of protocol for paediatric CD by a lot of GIs.

Sorry if he has been and I missed it in your posts.

If he hasn’t, push for it right now. It will help with his digestion massively until Humira kicks in. I’ve been on them since having my feeding tube removed (22months ago) and I can’t even tell you how much they help me every day.

Hope this helps.
✚ New Topic ✚ Reply