Frustrated mom

[cgravedoni]

hi all, so my son is 10 and has atypical crohns disease, he has never had constipation or diarrhea just has severe stomach pains and headaches are his usual symtpoms when he flares. So anyway we have been on apriso, budesonide, culturelle. Our GI wants him off the budesonide but everytime we talk him off he gets worse. So about 6 weeks ago we were switched to 6mp, still had flares so she told us to stay on the apriso til 6mp gets to be therapeutic. Since August he has missed 11 days due to crohns flare ups. We live in Omaha.. my questions are what are you kids on for pain when flares? I wonder if we should get a second opinion, see a pain doctor or counselor or what other parents who have been there recoomend.
thanks

 

[crohnsinct]

Right there with ya. My younger one is pretty much the same except she does tend a tad toward constipation. Dx'd a year agao and we arestill playing games. Budesonide doesn't work fully for her. She is also on Methotrexate (another immunomodulator). The only thing that works for her is Exclusive Enteral Nutrition. However, as we introduce food inflammation returns.

I think it could take up to 12 weeks for the 6mp to get to therapeutic levels. Not surprised the Apriso isn't holding him until that point. Our doc has my daughter on the never ending course of Budesonide...on it since June but down to 3mg now.

My girls don't take anything for pain. There are lots on here who do though and they should be a long shortly. Rice bags that you can microwave work good for some kids...combo of the warmth and the weight.

If things don't pick up soon, I would be asking for some testing to see if inflammation is still at play here. Fecal calprotectin would be my choice...gut specific. Could be he needs to step up to the next level of drugs but I would give the 6MP a complete shot first.

Many people also have IBS that overlays their Crohns which makes it super fun to figure out what is causing what...however, before I would accept that dx would want to be 1000% sure the inflammation is controlled.

 

[CarolinAlaska]

I feel your pain. It is so hard to be patient. My daughter took 3-6 months to become therapeutic on 6MP. She uses Tylenol for pain she can't handle, but describes most of her daily pain as crampy. We also used digestzen essential oils topically and in pill form, heating pads, resting, etc. It really is maddening that nothing seems to get on top of it completely, isn't it?

 

[pdx]

While we were waiting for Remicade and methotrexate to kick in, my daughter was on EEN through an NG-tube. It really helped with her stomach pain and cramping. Some kids do EEN orally, drinking the formula, and that can also be very effective. Maybe something to consider? Hope that the 6mp starts to work soon.

 

[cgravedoni]

Thanks all for your kind words and support I will take any hints anyone has

 

[Sascot]

Definitely worth considering the EN. My son only had tummy pain before diagnosis. He did 8 weeks of Modulen via an NG tube which worked great and got rid of the tummy pain.

 

[CrohnsKidMom]

Welcome to the forum, but sorry for the difficulty you are having finding a med that works. We usually just use a hot water bottle for pain, or Tylenol if it gets really bad. Both are just a temporary fix, but do help a little.

 

[Catherine]

I am mother of now 20 year old, who was dx at 16 years. Who also has no bowel symptoms.

Our GI believes is the pain is bad enough for the heavy duty pain killers you need to seen in the ER.

 

[my little penguin]

Pain gets bad
Tens unit works well for lower level pain but can take the edge off

 

[Catherine]

I also wonder whether your child need a course of pred to get into remission.

Imuran works well for keeping the patients in remission but it doesn't work so well for getting someone into remission.

 

[CrohnieMom]

My daughter also doesn't have the classic Crohn's GI symptoms. She never had constipation or diarrhea, but the pain in her stomach gets bad. The only thing that she says helps with the stomach pain is Bentyl. It does cause drowsiness, but takes the pain away. They even tried putting her on old generation anti-depressants that are used for pain, but that didn't work for her so she just uses the Bentyl. I hope your son finds relief soon!